Living Well with Multiple Sclerosis

Demystifying gluten with Dr. Colin Bannon | S4E19

Bio:   Dr. Colin Bannon is a retired medical doctor (GP-General Practitioner) who was diagnosed with MS at the age of 58. He was born in London and after early years working in farming and factories, studied medicine in Sheffield, qualifying in 1985. He was a GP in Devon for over 20 years.   Colin realized that smoking, the western diet, and stress were the main reasons for the development of the chronic diseases filling appointment lists and hospital wards. As a result, he developed an interest in preventative medicine, focusing on the impact that a diet high in sugar and fat has on the health of his patients.   Since his own diagnosis he has followed the OMS Recovery Program and remains in good health, relapse-free and with scans unchanged since diagnosis. He leads a local OMS discussion group and is working with the local MS team to help promote the benefits of a healthy lifestyle to people recently diagnosed with MS. Colin was also one of the presenters at the AMEX 2017: 7 Steps to Overcoming MS Event.   Colin’s hobbies are politics, growing food, writing, and contemplating the future while having fun with his grandson.   Questions:   Welcome to the program, Colin, and thanks so much for joining us on Living Well with MS. Before we dig into the sticky and spongy topic of gluten and MS, can you please share a little about your personal and professional backgrounds, namely your medical experience and history with MS and Overcoming MS? Before we dig into some more specific questions, since the topic of this episode is demystifying gluten, can you help us demystify it and tell us what gluten is? Now that we have established some of your medical and MS credentials, how did your interest in gluten and its connection to MS come about? I know this is a bit of a reductive question, but let’s cut to the heart of the matter – is gluten bad for people with MS? How do you handle gluten in your own diet? What are some of the interactions gluten has with the body that may not be great if you have MS? Is there a growing body of scientific research into gluten and MS that you can tell us more about? How does someone with MS determine if they should avoid gluten? Many gluten-free foods are full of other bad ingredients, like loads of sugar. Since someone following a diet like OMS recommends is already cutting many things out in the interest of improving their health, how do you find gluten-free substitutes to replace some of your favorite glutinous foods but which don’t raise other dietary red flags? Is there a need to re-evaluate dietary recommendations like the ones OMS offers and give more due consideration to the question of gluten? Before we sign off, any final thoughts or recommendations on the topic of gluten and MS? Thanks so much for being our guest on Living Well with MS, Colin. Your insights on gluten and MS have been incredibly useful and enlightening. And I encourage everyone to learn more about this important topic, and Dr. Colin Bannon, by checking out the information and links in our show notes for this episode. Thanks again, Colin, and we hope you tune in next time for another all new episode of Living Well with MS, and our sister podcasts, Ask Jack and Living Well with MS Coffee Break.   Coming up next:   On the next (and 34th) edition of our Coffee Break series, meet Leah Tsirigotis, contributor to the Overcoming Multiple Sclerosis Handbook chapter on Prevention and wife of OMSer Alex Tsirigotis. Premieres July 25.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E54 Transcript Demystifying Gluten   Geoff Allix (00:01): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode’s show notes for more information and useful links. You can find these on our website at www.overcomingMS.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org. Or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let's meet our guest for this episode.   Welcome to the latest edition of the Living Well With MS podcast. This edition is on demystifying gluten with Dr. Colin Bannon. Dr. Bannon is a retired medical doctor or GP, who was diagnosed with MS at the age of 58. He was born in London and after early years working in farming and factories, he studied medicine in Sheffield, qualifying in 1985. He was a GP in Devon, England for over 20 years. Colin realized that smoking, the Western diet, and stress were the main reasons for the development of the chronic diseases filling appointment lists and hospital wards.   As a result, he developed an interest in preventative medicine, focusing on the impact that our diet, high in sugar and fat, had on the health of his patients. Since his own diagnosis, he has followed the OMS program and remains in good health, relapse free, and with scans unchanged since diagnosis. He leads the local OMS discussion group and is working with the local OMS team to help promote the benefits of a healthy lifestyle to people recently diagnosed with MS. Colin was also one of the presenters at the Amex 2017 7 Steps to Overcoming MS event. Colin's hobbies are politics, growing food, writing, and contemplating the future while having fun with his grandson.   So welcome to the program, Colin, and thanks so much for joining us on Living Well with MS.   Colin Bannon (02:22): Hello, good to be here.   Geoff Allix (02:24): And before we dig into the topic, and we talk about [inaudible 00:02:29] to MS. Could you share with us a bit about your personal/professional backgrounds, your medical experience, and also your history with MS and OMS?   Colin Bannon (02:41): Oh, well, I left school rather early and started working on farms, which gave me an early interest in food and its production.   Geoff Allix (02:48): That's fantastic. If you want to become a doctor, I think that's always the advice is leave school early.   Colin Bannon (02:54): It was in my case, but I went into medicine at the age of 25 and worked in the NHS for 25 years, as a GP for 20 years. And then developed MS. I was diagnosed with MS at the age of 55, but of course, like so many of us, once you get the diagnosis, you realize soon as if you develop the illness there; I think I developed the illness when I was 18 after infectious mononucleosis glandular fever, and had various little symptoms through my life till it finally got to the point where with all the modern technology of scanning and so on and so forth, I was able to get to the point where I realized I had MS, which came to me as a bit of a shock as it does for us all, because up to then I've been relatively healthy. But it did, for me, explain a lot of very strange phenomena in my life, which was good. In a way, it was a relief to have the diagnosis because a lot of things became very clear. I'm also a food grower with a bit of a farming background. I've got enough space where I live to grow my own food, and I've become acutely aware of how good food is good for us. Fresh food is just unbelievably good. And I think the combination of being a GP, appreciating the health-promoting benefits of food and having MS myself. So, we want somebody like us all who need to tighten up on our diets and make sure we do our best, puts me in a position where I find myself knowing quite a lot about this topic.   Geoff Allix (04:32): And actually, you are very good at sharing as well because we are in the same OMS Circle. So actually you share a lot of information there on all sorts of things, like COVID and, yeah, you're very happy to share what you know, aren't you?   Colin Bannon (04:51): Well, I always thought I'd like to write a blog, but never quite got around to it because when the pandemic came along with lockdown, I thought, "Wow, we've got, we've all got more time." So I started writing the blog about COVID and very much along the same lines, really, because the healthier you are, the better chance you have of doing well with COVID, which it seems like we were all going to come across at one point or another, or most of us anyway, and many of the same messages that applied to people with MS applies to the population at large to look after your health. So I started writing a blog and doing a bit of research every day to back it up. So that became another little facet to my obsession with food and health and the relationship between lifestyle, and how we feel and how we enjoy life.   Geoff Allix (05:41): So we're going to be talking about gluten. And just before we get into specific questions, just on a general point, what is gluten?   Colin Bannon (05:51): We can think of gluten as the scaffolding, which holds grains together in a way. I mean, the Latin for gluten, the place where it comes from is for glue. And it's literally the protein structure that holds wheat together. And for humanity, it's had a huge impact because it gives bread, and gives flour and thus bread, or it gives dough. I should say more specifically, this sort of elastic, gluey property. Also, you can make bread out of it, which can be preserved to a degree. And we've been doing that for 30,000 years now, and it's had a big impact on human development because it's been one of those staple foods, which can be relatively easily grown, critically important. It can be stored. So populations could get through the winter and it can be processed into bread relatively simply in what was historically most people's own kitchens. So it's had a huge impact on humanity for the better, mainly because it's a highly nutritious food, but there are as we will come to shortly some issues with it, which we all need to be aware of. It's the scaffolding in a way that holds the whole thing up.   Geoff Allix (07:03): Yeah. And actually, the portability is one of those sorts of things. You mentioned that just think where we live, that pasta is a sort of go to staple. And, I make my own pastas, which are very OMS friendly pastas. I always found quite handy if I get [inaudible 00:07:24] because I used before the pandemic, I traveled a lot and I'd always go with several pastas because they were like a big solid full meal. And so I could then sort out where I could eat when I got to a place in the world, but I had my sort of couple of pastas. [inaudible 00:07:43], but that is... Yeah, how do you do that with that? But anyway, that's sort of more of a question for someone like Jack. How do you make something transfer if you're not gluten?   Colin Bannon (07:55): We'll come to that.   Geoff Allix (07:56): So straight to the sort of heart of it then is gluten bad for people with MS?     Colin Bannon (08:08): No, generally speaking, it's not, that's the first thing to say, but people with MS are human beings like anybody else. And about two in a thousand people with MS will have a proper wheat allergy. Come out with rashes and all sorts of symptoms when they're exposed to wheat.   Geoff Allix (08:24): So like someone with celiac or something like that?   Colin Bannon (08:27): Well, celiacs the next thing. 1% of the population now have celiac disease.   Geoff Allix (08:32): Right.   Colin Bannon (08:32): And I think it's like about 1% of the population with MS will also have celiac disease, which in the UK would be about 1,300 people. Some of those would've been undiagnosed. I mean, most people with celiac have it... Severe celiac, have it diagnosed in childhood, it causes really significant symptoms, but for a lot of people, it scrambles on and it's not quite bad enough to get you to the doctor, but it interferes with life. But when you get diagnosed with MS and you try and improve your health, then unwanted gut symptoms start to become more important. So for anybody with MS who thinks they may have gluten problems, it's important to see a doctor again, there's blood tests.   There are various things that can be done to diagnose that. As I say, there's 1,300 people in the UK out there who would have a formal diagnosis of MS and celiac disease. And it's important to get on top of both of them. Underneath that, there's about one in 10 people in the country who report symptoms of intolerance to gluten. As you mentioned a moment ago, who have trouble with wheat and all its products. And there's irritable bowel syndrome with which it shares an overlap. And there's something called nonspecific gluten sensitivity, also gray areas, fairly poorly defined conditions. But the common feature of which is people who eat bread or bread products, maybe above a certain dose and then have symptoms of bloating too much, mild abdominal pain and not feeling very well. And for the one in 10 people who experience those things, it's very important to take certain measures to define your relationship with gluten.   I guess the first thing to do in those situations, unless you feel sufficiently unwell to need a doctor, in which case that's the thing to do. But if it's just one of those background grumbling issues, it's fair enough to try a gluten-free diet, which involves giving up grain cereals, basically, which can sometimes be a good thing in itself because the average Western diet of course includes breakfast cereals, which to me are often long-acting metabolic poisons. They're largely low-quality grains, lots of sugar, lots of processed chemicals. And they're pretty bad for you, anyway. But if you give up gluten, you give up a lot of good food, but you also give up a lot of bad food. So I guess just taking a step back, the first thing to do, if you are worried about gluten sensitivity, is to get bad processed food out of your diet. And just if you're going to buy bread, buy really good stuff and see if that makes a difference. And if that doesn't make a difference, giving gluten up altogether is a bit more of a challenge, but it needs doing and then waiting for six weeks to see how you are. Now, if after six weeks you feel a lot better and you think right, I'm sensitive to gluten, I would suggest the thing to do then is to reintroduce it into your diet, not the processed stuff, but high-quality grains and high-quality bread. Just to see if your symptoms come back, because if your symptoms don't come back, you could think, well, it's probably not the gluten and it may be something else you can placebo effect from taking positive action in your life. You may have given up the low-quality stuff, which is very bad for your stomach.   Geoff Allix (12:12): So let's say the good [inaudible 00:12:14]. So I've periodically sort of made my own sourdough and stuff because of lockdown, with time on my hands. And also there was no bread in supermarkets. So is it to the extent of making your own sourdough, or if you are in the supermarket and rather than buying the stuff that's in plastic bag, you go to the back and buy the stuff that they've sort of baked. Well, I think they sort of part bake it, don't they? In store, but there's sort of stuff that's the fancier stuff at the back of the store, that's not in a plastic bag. Is that acceptable? Or are you saying you really need to be making your own sourdough type situation?   Colin Bannon (12:56): I think it's a halfway house. The quality in supermarkets, there's a lot of stuff wrapped up in plastic, which is highly processed. And incredibly, when you talk about supermarkets, 60% of the calories we eat in this country now come from ultra-processed foods. And many of the breads are in that category. And that they're a real issue for anybody with MS or any human being on the planet, I think. I'm lucky here, because I've got a bakery up the road, which is a small enterprise run by a family. They get their grains from an organic farm in Somerset and including spelt wheat, which they can make for me. And it has no effect on me at all. And, in fact, has a positive effect because it was very healthy food that cost three pound 50 a loaf for two kilo loaf and the two kilo loaf of white standard off-the-shelf bread costs what, 60 P or something?   So there's an issue there for people who are struggling with finances, but real locally made bread that, you know it's provenance. You make it yourself from grains that you may know where they come from, is the ideal. Anything less than that in a way is less than ideal. But again, you got to take a step back and think, well look, is it bothering you? We're all different. If you've been eating the same bread for years and you're really not having a problem, well, then you just needn't worry. You just carry on doing what you're doing. It's that 10% of people who are having trouble with bloating and tiredness who are concerned about a connection between what they're doing and their MS symptoms who need to take a step back and think, right, let's make sure I haven't got a serious problem by seeing a doctor. Let's try and exclude gluten by going first, as I said, just try only finding a source of high-quality bread and sticking with that to see if that makes a difference. And if you're still not getting symptoms for six weeks, two months, reintroduce it and see if your symptoms come back. And at that point, you'll pretty much know where you are.   Geoff Allix (14:57): And how do you handle gluten in your own diet?   Colin Bannon (15:01): Well, I've never really had much of a problem with gluten. So I think I'm one of the 90% who are just okay with it. But in terms of the OMS philosophy and my own philosophy to food, I like, as I said, I'm lucky to have a baker up the road who can provide me with high-quality product. I wouldn't, I don't think, buy bread on a regular basis from vast majority of supermarkets, because it's just not the quality I want and I can afford to pay three pound 50 for something which I think is about the price for high-quality product. And that's what I do. I also don't eat biscuits, buns, cakes, bagels, any of that processed food. As a little aside, my grandson's five, he just started school. He came home one day with some bagels from school or white bread bagels, which they didn't eat. It ended up coming to me because I put all the waste food into my wormery and I put these bagels there. These bagels were sitting in the middle of my wormery and the worms wouldn't eat them.   Geoff Allix (16:07): Wow.   Colin Bannon (16:09): They actually upset the whole ecology of my wormery which actually went to putrefaction, and it caused terrible trouble. And it turned into this horrible gloopy white stuff that honestly, bacteria, fungi, moles, mice, and worms wouldn't touch with a barge pole. Now, if those organisms aren't going to eat this stuff, nor should we.   Geoff Allix (16:31): That's what made me realize about tea bags, actually. That tea bags are not biodegradable or I think they are now actually in the UK, but they weren't a few years back because that would go into the wormery and all the tea bits would be gone, but the tea bag remained and you're like, okay, that's not biodegradable, is it? You think it was you think it's just made of paper, but it's not.     Colin Bannon (16:54): No, that's right. I think there's a pervasive thing going on where as a population we've gotten used to doing certain things like eating, drinking tea out or plastic tea bags. I mean, most of us didn't even know that was going on.   Geoff Allix (17:05): Well it looks like paper, doesn't it? So [inaudible 00:17:09].   Colin Bannon (17:08): Exactly. And then, there's a food thing where you get used to the food you're eating when you carry on eating it and you get used to feeling a certain way. And my experience as a GP, helping people improve their diet is transformative. So if you move away from bagels and buns and cakes and biscuits and confections and wheaty confectionary and move to a healthy wheat-based bread or whatever other products you want to get that are high quality, you can start feeling a lot better. And for a lot of my patients and I've seen it with people with MS, you start eating a healthy diet with good quality stuff in it, not the sort of stuff the worms won't touch. And you suddenly think, my God, I feel so much better.   And I've had patients say to me for 20 years I have felt rubbish compared to how I feel now on this diet. And it's a wonderful thing to do, and it gives us a certain power over our own lives to improve how we feel. But I guess one of the traps with gluten is I think there's about 3% of the population now who are on the gluten-free diet. The industry's worth 17 billion a year producing gluten-free foods, which are often not very high quality. And there are quite a few people out there who are not sensitive to gluten who are eating restrictive gluten-free diets, who would actually probably benefit from the nutrients available in well produced, organically farmed wheat.   Geoff Allix (18:42): And I think that's a big thing with food production generally that you can be vegan and really unhealthy because there's loads of vegan stuff in the supermarkets now, but generally it's massively processed. And equally I went down the gluten-free aisle the other day because I've just started to try cutting down gluten slightly like you're saying there's loads of gluten-free stuff, but you look at the ingredient list, and it's like half the packet long. And you think that's for something like... a loaf of bread or something that's massively processed.   Colin Bannon (19:19): Well, the food industry is well advised by their food technologists and their advertising agencies and they know how to get people to eat their stuff. And it's another feature of our age, which is I'm certain has something to do with the increasing prevalence of [inaudible 00:19:35] as well as other various diseases that some of us are eating the worst diets ever consumed by human beings. When you look at some of the products you experience in the free from aisle and you go to supermarkets and look around, you think, well, 50 years ago, a 100 years ago and all the time that human beings walked this earth prior to that, we never had the sort of food we're eating now. And when you look at those products, we really shouldn't...   Like the worms, we shouldn't touch them with a barge pole. And I think one of the issues with gluten is before you go to the nuances of gluten and the gluten-free diet you've got to remove the really bad stuff the highly processed sugary foods full of all sorts of preservatives and chemicals, which may be upsetting your microbiome, which of course is the focus really of where gluten has an impact on many people.   Geoff Allix (20:32): Yeah. And so what interactions can gluten have for people with MS?   Colin Bannon (20:39): Well, I guess in a way the same interactions it has with anybody else in that if it's low-quality wheat in low quality food, which contains gluten, then it's going to make you feel worse. If you have a high sugar product, if you have two donuts with a coating of sugar made out of white bread, I actually think an hour later, you're feeling worse, your metabolism's been upset, your blood sugar's gone up and peaked, your insulins come up to try and get it out of your blood. It’s ideal for the food industry, leaving you feeling hungry a couple hours later. So you'll have another donut. There are these traps that we all get into with poor food when it comes to gluten specifically. I'll go back to what I said earlier in that if you're having real problems with gluten, you may well have already been diagnosed celiac, but if you really get terrible bloating, loose motions, feeling tired after you've had a wheaty meal, then it's worth seeing your doctor. There are blood tests you can do to screen for celiac disease. And if they're positive, it's worth going on to more sophisticated tests to make sure that's what you've got. Because if you've got celiac disease, then you need to avoid gluten totally for life.   But again, for a lot of people, it's just you mentioned earlier on that if you have a sandwich, have a breakfast cereal in the morning and a sandwich for lunch and donut halfway through the afternoon or pizza for the evening, that is an incredible dose of wheat. And you could take a step back and think, well perhaps just have a sandwich for lunch and leave the rest, just get the balance right between what is a very nutritious food and the volume of this stuff you can just get through. And, in a way, if you're eating the wrong foods, the key to people MS is it causes inflammation. And that's exactly what we want to avoid in MS. And that's probably mediated through the microbiome.   Geoff Allix (22:40): So if someone is trying to cut down their gluten, what's the best way of finding good gluten-free substitutes?   Colin Bannon (22:52): Well, looking at the label for one thing to find out what its provenance is, where it's come from. And indeed, if a food has a label, I'd already be suspicious because the bread I buy up from a trusted bakery up the road comes in a paper bag. It doesn't have any labeling attached to it at all. So if you're already reading a label, you should be suspicious. Gluten-free products I'm not a big fan of, as you said earlier on, that they've got a list of ingredients, as long as your arm. I don't think my experience of them is that they're as tasty. And I don't think they're as nutritious as the real thing. So I would personally avoid gluten-free products. And if you genuinely want to get gluten out of your life, then I would get grains and cereals out of your life and concentrate on the whole range of other foods, which will provide you with the nutrition you need.   Geoff Allix (23:45): So when you say grains, just to be sort of specific, we're talking mostly wheat. I mean, sort of rice is fine, presumably.   Colin Bannon (23:55): Yeah. Rice is fine. Quinoa is fine. A lot of others... Yeah.   Geoff Allix (23:55): Oats. Oat milk and things like that.   Colin Bannon (24:02): Oats are variable. But again, you're getting into a gray area there where you've got to say, look, we're all individual. We all react in different ways. Try things. If things make you feel bad, then have a good think. If they don't make you feel bad, you're probably fine. And you can carry on with them because, especially with OMS, if you're missing dairy, so you have something like oat milk you're going to eat. So you've got to be careful at this point, not to say, right, no bread, no wheat, no rye, no oats. Because each time you get rid of one of those, you're getting rid of potentially very highly nutritious foods. So then you've got to look at the rest of your diet very, very carefully. So if you're eating a truly gluten-free diet, and you're also having processed food, you can end up in trouble.   Geoff Allix (24:56): So is it, you sort of maybe keep a food diary and experimenting is okay? If I'm like you sort of switching to spelt or I'm still having oats but I've got rid of the packet bread.   Colin Bannon (25:11): Yeah.     Geoff Allix (25:12): And try seeing-   Colin Bannon (25:13): ... Do one thing at a time. If you're going to make a change, then make that change. Don't make a load of changes together because then you'll be confused as to which aspects of the changes is actually making the difference. If you don't want to see the doctor, if your symptoms aren't that bad, then completely removing gluten from your diet is quite doable and oat milk, rye, barley, beer, as you said earlier on, and all wheat products is doable for a month or six weeks. And if you feel a lot better, then it raises the issue of whether it was gluten or not, because there's a big placebo effect attached to actually positively doing something. So reintroduce it. And if all those horrible symptoms come back, then you know that you've probably got an issue with gluten that you need to deal with. And again, it may be dose related. It is amazing how much wheat we can eat. And it may just be something you need to take care of.   Geoff Allix (26:15): So, from what you've been saying, one of the things is... And this has come up with a lot of other people. So actually the over processing of food. I mean, do we have to accept that we need to spend more time cooking? Because I think the modern diet, essentially, in the last 30, 40 years, we have got to a point where we get home, we've put something in the micro or the oven and 20 minutes, half an hour later eat a meal. And we are not really willing to accept anything beyond 20 minutes or half an hour to cook a meal. And also the other thing you mentioned about the price, we expect food to be really cheap now. And certainly in the UK and I think probably a lot of the world, partly due to situation in Ukraine and other things, prices are going up and people are saying, oh, this is ridiculous. But it's like, hang on. You could go in a supermarket and you could buy a chicken for like two pounds. And as you're saying, like a loaf of bread for 60 P and things like this, the prices were... And there's a lot of competition in that market. The price was being driven incredibly low. So is it a point we need to accept that we need to pay a bit more for food and we need to accept that we need to spend a bit longer making our meals.   Colin Bannon (27:35): I think so. One of the big changes, I mean, the situation's been transformed in my lifetime. I remember, I think I was about 15 when the first supermarket in north London was opened. Prior to that, my mom would do the rounds every day, going to the fruiter, the veggie shop, they were separate in those days, the butcher, the baker and all the other shops you needed to get the food she needed and she'd get them every day. And my father worked, my mother looked after the home. That was the format that we've got that persisted for God knows how long. Over a period of our lifetime, everything's changed. Women are often working now. And as you say, you get home at the end of the day, you don't want to spend an hour and a half in the kitchen preparing meals the way we used to.   So fast food, convenience food is something that has crept into our lives, and now has dominates. 60% of the calories we eat come from ultra-processed food. But I'd say two things. One is yes, we do need to pay more for food in a way because farmers are struggling in this country. The average income for farmers is less than 25,000. The average age of farmers in this country is 64. So we need to reward farmers properly for what they do, which is give us urban dwellers the chance to live. We absolutely rely on farmers here and around the world and we need to make sure they get a better deal. And, of course, a high quality loaf bread costs three pound 50, a low quality loaf costs 50 P for 50% of the people in this country worry about their finances on a day-by-day basis, which to me is one of the markers of poverty.   If you spend every day anxious, worried about how the next shopping bill's going to hit you. Then you're always crimping, always saving and buying a pretty low-quality diet. And when it comes to MS, neurologists I speak to are increasingly saying that it's becoming a disease of poverty. They're seeing more and more people come to the clinics who are overweight, eating a poor diet and are struggling financially. These are wider issues than OMS can address in a way. But the reality of the world we're facing is an intrinsically unhealthy one. At some level, this has to be addressed for those of us who have a choice. I'd say, yes, we need to spend more on our food. We need to buy quality. There are ways, of course, for busy couples to do this, to have one cook a week where you cook something that can last you a week. We have freezers now, which is very good. And also maybe trying to create a format where cooking becomes something pleasurable, which is an art that is gradually being lost for many households in the country.   These are tough times. These are tough times. Money is tight, time is tight, people are stressed and there's an absolute flood of some of the worst food that humanity has ever eaten, cheaply and readily available in supermarkets, which you can usually get to within a minute or two of your front door.   Geoff Allix (30:53): Well, do you have any final thoughts or recommendations for people thinking about gluten and MS?   Colin Bannon (31:05): Yeah, I would say define your relationship with gluten by taking a number of steps. One, make sure you've not got a serious problem by seeing your doctor if your symptoms are severe. If you're worried about intolerance, maybe consider getting it out of your diet entirely for six weeks and then restarting, and if the symptoms recur, you know where you are, but for 90% of us, we'll be absolutely fine with gluten. As long as it comes with high-quality food, because the low-quality food that you buy, white bread, highly processed bread and bread products, biscuits, buns, cakes, and confectionary is pretty damaging to our health. Everybody suffers from that who eats poor quality food. And then you can know where you are rather like the OMS program.   Once you define where you are, find your new way in life, you can just carry on with it and won't have to worry about gluten anymore, whether you are enjoying it because it does you good or whether you've left it out of your life, because you know it upsets those hundreds of trillions of organisms in our microbiome, which depend on what we eat to give us the health we've co-evolved with them.   Geoff Allix (32:19): With that, thank you so much for being our guest on Living Well with MS, Colin. The insights on gluten and MS have been incredibly useful, I think, and I think everyone will find a useful perspective to have a look at, and I encourage everyone to learn more about this topic and have a look at the show notes where we've got links to Dr. Bannon's pages and more information. So thank you again, and we hope you tune in next time for another new episode of Living Well with MS. And also the sister podcasts, Ask Jack for cooking related questions and Living Well with MS Coffee Break. So thanks again for joining us.   Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode.   Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   The Living Well with MS family of podcasts is for private non-commercial use and exist to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates or staff.  

Ask Jack: Salt | S4E18

Welcome to your next “plating” of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to podcast@overcomingms.org.   Introduction   Welcome back for another deep dive into OMS-friendly eating and cooking on Ask Jack. Our last episode was more of a “meaty” variety, discussing all things to do with meat replacements. What do meat replacements generally contain a lot of? Salt. So, it’s only quite natural that we follow up on that with…   …this episode’s topic: salt and salt replacements.   So why are we devoting a whole episode to simple seasoning? Firstly, let’s follow the science. HOLISM as well as broader research suggest that it’s healthier to reduce your sodium intake, especially if you have MS. Then, there’s the reality of our lives. Particularly when first adopting the OMS program, most people opt for the path of least resistance, which involves using more processed foods rather than cooking from scratch. When we use processed foods, we often don’t dive into the ingredients as carefully, and some of these foods contain excessive amounts of sodium. And finally, there’s the obvious – salt is probably the most common food seasoning out there, and it does play a key role in making food taste better. So it’s essential to understand the role salt plays in our food and our health, but also to explore alternatives which might be better for us.     Jack has carefully curated several questions around this topic, and we have solicited some directly from the OMS community. Thanks to Jack McNulty, we are about to get some answers. Happy to chat with you again, Jack. This topic is getting me and our audience salivating, so let’s dig right into our first question.   Questions   So Jack, the question that’s probably at the forefront of most people's minds is how much salt can we use within the OMS diet? Does too much salt affect MS? If someone is looking to replace salt, for example perhaps they also have high blood pressure, what are some suggestions for replacing it in cooking, or using substitutions to reduce salt intake? On that note, a member of our community, Sarah Barnett, wanted to know your thoughts on potassium chloride as a salt substitute? And what about liquid aminos? It’s a lower sodium product than soy salt yet Sarah feels it adds that dimension of umami to dishes. Interstitial announcement: just a quick update before getting to our next question about salt. The Big Picnic is happening this July, and it’s an OMS tradition for encouraging our community to prepare delicious OMS-friendly foods to share with others as a way of raising awareness about the OMS diet. The Ask Jack podcast has already exposed you to loads of new cooking and recipe ideas, and in case you need a refresher, you can find many tasty, healthy, and OMS-friendly recipes on our website, as well as on Jack’s website, myfreshattitude.com. Hopefully these recipes have will inspire you for your OMS Big Picnic! You can get more info on the Big Picnic on our website, or please check the show notes for this episode. Jack, there are so many salts out there. Can you explain the differences between the different types, such as sea salt, rock salt, kosher salt, fleur de sel, colored salts, and kala namak? And what about certain health claims made about products like Himalayan salt? Are they better for you? When selecting salt, what are the main things one should consider or look for? What about iodine in salt? Should this always be included in the salt I purchase?   And with that, thanks for yet another fascinating episode, Jack. I look forward to your return for the next Ask Jack this Fall, which will premiere on September 28th. Till then, have a great low-salt summer!   About Jack McNulty:   Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack operated his own catering business and cooking school for 15 years, while also finding time to write about cooking. Jack’s current activities include operating myfreshattitude.com – a website dedicated to providing healthy vegan recipes and useful vegan cooking instruction and techniques, writing and distributing a weekly international newsletter - VeganWeekly – to inspire people to cook healthy vegan food. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the OMS Cookbook, and authored the Eat Well chapter in the latest Overcoming Multiple Sclerosis Handbook.     A Deeper Dive into Salty Waters:   For those who may be interested in taking a deep dive into the topic of salt, Jack recommends reading Salt – A World History by Mark Kurlansky and Salted by Mark Bitterman. Both books are available through all major book distributors.   Here are Jack’s favorite salt substitution herb and spice mixtures:   From the Sea Combine 2 tablespoons dried dulse, 2 tablespoons dried wakame, ½ nori sheet and ½ teaspoon lovage. Blend well and keep in sealed jar for 3-6 months.   Middle Eastern Combine 2 tablespoons ground sumac, ½ teaspoon ground fenugreek, ½ teaspoon ground ginger, ½ teaspoon ground cumin, ¼ teaspoon cayenne. Blend well and keep in sealed jar for 3-6 months.   Italian Combine 2 tablespoons dried oregano, 1 teaspoon ground coriander seeds, 1 teaspoon ground fennel seeds, ½ teaspoon lovage, ½ teaspoon dried mushroom powder.   Jack’s Links:   For more info on the OMS Big Picnic, click here. Be sure to check out Jack’s weekly international newsletter – VeganWeekly– written with the aim to inspire people to cook healthy vegan food.  Visit Jack’s website comfor mouth-watering healthy vegan recipes and to learn useful vegan cooking techniques.  Jack’s social media links are all here: https://linktr.ee/jackmcn.   Coming up on our next episode:   Gluten is a sticky topic in the MS community, so on the next episode of Living Well with MS, premiering July 20, we demystify it by tapping the expertise of our guest, Dr. Colin Bannon. Tune and learn more about what that loaf of bread may (or may not) be doing to you.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E53c Transcript Ask Jack #8   Geoff Allix (00:02): Hi, I'm Geoff Allix. Host of Living Well with MS family of podcasts from Overcoming MS.   Jack McNulty (00:07): Hey everyone, Jack McNulty here. Welcome to another new and exciting season of Ask Jack, a special Living Well with MS podcast series. I'm excited and honored to answer food and cooking related questions from you. The overcoming MS community   Geoff Allix (00:22): To submit a question for future episodes of Ask Jack, please email us at podcast@overcomingms.org, that's podcast@overcomingms.org. Please check out this episode's show notes at www.overcomingms.org/podcast, and dig into additional information and links on what we'll cover. And now let's rev up our culinary curiosity and Ask Jack.   Geoff Allix (00:45): Our last episode was more of a meaty variety discussing all things to do with meat replacements. What do meat replacements generally contain a lot of? Salt. So it's only quite natural that we follow up with an episode on that. This episode is salt and salt replacements. So why do we devote a whole episode to a simple seasoning? Firstly, let's follow the science. HOLISM, as well as broader research suggests that it's healthier to reduce your sodium intake, especially if you have MS. Then there's the reality of our lives, particularly when first adopting the OMS program. Most people opt for the path of least resistance, which involves using more processed foods rather than cooking from scratch.   Geoff Allix (01:23): When we use processed foods, we often don't dive into the ingredients as carefully and some of these foods contain excessive amounts of sodium. And finally, there's the obvious: salt is probably the most common food seasoning out there. And it does play a key role in making food taste better. So it's essential to understand the role salt plays in our food and our health. But also to explore alternatives, some of which might be better for us. Jack has carefully created several questions around this topic. We've solicited some directly from the OMS community. Thanks to Jack McNulty, we are about to get some answers. So Jack, welcome to the latest episode of Ask Jack.   Jack McNulty (02:02): Thanks, Geoff. It's great to be back for another episode, really looking forward to today's discussion.   Geoff Allix (02:07): And so we're talking about salt and it's something that's not necessarily at the forefront of the OMS program. I think people are thinking about meat, they're thinking about fat, they're thinking about dairy. So salt is an important consideration though. So, how much salt can we use within the OMS diet, and does too much salt affect MS?   Jack McNulty (02:35): Hmm. Yeah. Two excellent questions to get started on our discussion today with respect to salt. Salt, with respect to OMS, yeah not even just with OMS, just in general terms, it's really kind of a confusing topic I think these days. And it's interesting to me because salt has been widely used in the human diet, really for thousands of years. It's had a reputation as one of the most important elements for humans. And there's no doubt that salt, perhaps more than anything else, has contributed more to human development that really than any other element. Yet today, for some reason, salt has taken on a new role. It's sort of a villain out there in the internet space. And there's just a lot of confusing information that portrays salt in a negative manner. And so maybe we can just start with that.   Jack McNulty (03:41): Most people require about 1500 to 2000 milligrams of sodium per day. So let's just break that down. That's about five to seven grams or less than two teaspoons per day of salt. So we're talking about generally a small amount. But because most people eat, at least the average person eats out a lot, they eat a lot of processed foods, eat a lot of bread, maybe some snacks, nuts, things like that. The average intake these days of sodium is actually about 10 to 15 times more than it should be, which is enormous. So is it really the sodium that's playing a part and should be the villain, or is it really the diet? And I suspect it's the latter, as opposed to the former. Really, if you cut back on those foods, then the intake levels will automatically go down and there's no reason then to limit sodium further unless you have some other underlying health issue issues.   Geoff Allix (05:03): Yeah. Because you said two teaspoons, and I thought that's quite a lot. I don't think I'm putting two teaspoons of salt into my food, but it's actually not coming from me adding salt. It's coming from the processed foods, which are high in salt.   Jack McNulty (05:13): Yeah, that's right. And you know, salt is basically in everything. And so yeah, maybe we don't necessarily salt our food so much. And in fact, I suspect that most people when they cook for themselves at home, they're actually under salting in my opinion, just from a seasoning perspective. So I don't have any great worries that people are going to just over consume salt. If they cut back on restaurant food, processed food, snacks, and bread is one of the biggest culprits of salt intake. Then it gets into a nice level. Too much salt of course could lead to other types of health issues, like cardiovascular disease, high blood pressure, cancer, kidney issues, all kinds of things. There are important reasons to keep your sodium intake low. But before you get too crazy about dropping all your sodium, I think it's important to understand that salt is a requirement or sodium is required in our diet.   Jack McNulty (06:29): We need it to regulate and balance the fluid levels in our blood and around our cells. And it plays a key role in nerve and muscle function. So it's really important to have sodium in your diet. Plus it actually makes food taste better, but we'll go into that a little bit later. Yeah, so it's really important I think to include sodium, but just be cautious as to how much you're actually putting into your system. With respect to OMS, the latest evidence really indicates that sodium intake has no bearing whatsoever on MS. It won't cause flares, or relapses, or anything like that. That's according to the latest evidence. Of course, I'm not a doctor, I'm just a cook. So I follow it closely, but I encourage people to do their own research in that area. But according to the latest information and I do talk a lot about it. Yeah, sodium isn't a big player with respect to MS.   Geoff Allix (07:42): But in terms of MS, we should always be wary of comorbidities. So the last thing you want to have, if you've got MS, is high blood pressure, heart disease.   Jack McNulty (07:58): That's exactly right. All good reasons to limit sodium intake to where it should be on a daily basis. And again, that should be no problem for most people, if you're really reducing some of the major causes. Processed foods are a big contributor, also restaurant food, and bread.   Geoff Allix (08:22): Okay. So you said that actually it does make food taste good. So what in what role does salt play in that sort of area? Because I've often heard that actually on cooking programs, they say, "Oh, this is under seasoned."   Jack McNulty (08:42): Yeah. Don't ever cut the chef when they say that though, some chefs tend to go a little bit too far.   Geoff Allix (08:52): But what does it bring to food?   Jack McNulty (08:55): Yeah. Well, salt has a number of different culinary uses. Let's just back up for a second and just kind of go into what salt is. First of all, salt is just sodium chloride. It's a simple inorganic material. And it all comes originally from the oceans. These days there's about 50% coming from the ocean, and about 50% coming from rock mines. So from the rock salt, that's basically a residual salt from the rock that was once an ocean, but now is perhaps part of a mountain or something of this nature. And that's how that rock got into those particular mines. It is important to add flavor to food, but it's also important to understand that salt itself doesn't add flavor, it enhances flavor. It's really the only natural source that we have that contributes to one of our basic tastes.   Jack McNulty (10:06): And of course that's salt. So we have salt, we have acid, we have bitter and we have sweet. Those are the four basic ones of course; umami is the fifth one that's recognized these days. But salt plays some other roles. It's not just contributing to enhancing flavor. It enhances aroma in our mouth also. So the presence of salt will enhance aroma sensations in our mouths. It balances bitter sensations, so you can imagine eating a piece of bitter lettuce or something like this. Try it at home, it's really fascinating. You eat it you go, "Oh, that's pretty bitter." You sprinkle just a tiny amount of salt on it. And you'll be amazed at how that balances and almost brings out a sweet characteristic in the lettuce.   Geoff Allix (10:59): So the classic salt and vinegar flavor combination.   Jack McNulty (11:01): Exactly. Just creating that balance in your mouth. That's what you're driving towards with salt. And that's why people tend when they under season, that's what a chef is going to look for. And that's why they say, "Oh, that doesn't have enough salt." Because they're looking for that balance in their mouths. If there's one of those elements that plays too prominent of a role, for instance, it's too acidic or often times it's too bitter, a little pinch of salt will bring that balance in the mouth and you'll immediately notice it.   Jack McNulty (11:38): I'll give you an example. I was just traveling in Italy. One of the regions I visited was Tuscany, and Tuscany is renowned for baking their bread without salt, which is really fascinating. And it's quite shocking if you weren't aware of that going into the game. You eat a piece of bread and go, "Whoa, that tastes different." There's no aroma. It tastes very flat and you go, "What is that?" And it's because there's no salt in the bread. And then there's a reason for that. It's kind of an interesting history.   Jack McNulty (12:12): It has to go back to the Roman days and salt taxes and whatnot, and then Tuscans decided not to pay any salt tax. So they started making their bread without salt. And to this day, it's still done. Interesting little side note there. But salt also plays some other roles. So it helps draw a liquid out of food through a process called osmosis. So to give an example, when I'm sauteing onions for instance, the beginning of most recipes. Just in a dry pan, I usually will add a pinch of salt to those onions as they hit the pan. And what that does is it draws the moisture out of the onions and they begin stewing in their own juices. So I don't add any water to the pan. I just allow that natural process to occur. And that seasoning goes into the onions, penetrates the cell walls, softens them quicker and drives flavor directly into the onion or whatever I happen to be cooking.   Jack McNulty (13:22): It's a very useful ingredient or element to use in that particular process. But of course, salt also discourages the growth of bacteria. Very important when you're talking about pickling and fermenting. Which is one of the main culinary roles of salt. And so it will change flavor, think of how a cucumber gets changed into a pickle for instance. And that's just done with the cucumber in a brine solution of water and salt. And that's generally a basic pickling that will completely change the structure of the cucumber and turn it into something completely different, with a little bit of an acidic punch to it. So salt as a seasoner, you're looking at flavor enhancers, you're looking at aroma enhancers, and balancing bitter components. From the perspective of drawing out liquid, something like sweating onions, you can replace some of that salt just by using a lower heat and increasing the time element. In terms of pickling and fermentation, that's the other role for salt and of course there are alternatives to that as well.   Geoff Allix (14:54): So what if someone is looking to reduce their salt intake in their own cooking. What are some suggestions that you'd have to replace salt in cooking? Are there salt substitutions that they can use?   Jack McNulty (15:11): Yeah, well, let's break that down. From a flavor perspective or enhancing aroma, there are things that you can do by adding herbs and spices for instance, creating a lot more flavor that way. Of course, when you do that, recognize that herbs and spices are going to add in most cases, even more bitterness. So taking the salt out, adding that it's going to provide a little bit more bitter flavor in your food and some people need to get used to that. Acids would be another thing to add to food, to enhance flavors and aroma. Things like lemon, vinegar, tamarind, which is very nice. I use pomegranate molasses a lot and that will increase the acid amount in the food and sometimes create a situation where you don't necessarily need a more salt. It just adds a flavor punch.   Jack McNulty (16:10): You can use brines, which will have some naturally occurring salts still in the brine. So brine from sauerkraut, or kimchi, or something like this, just a teaspoon of that functions the same as adding some salt. But your sodium content will be less. And one of my favorite ways also is just using seaweed. Things like dulse, and kelp, or even just nori sheets broken up, because that will have some natural sodium. Or introducing naturally sodium rich products such as sunflower or other ingredients that grow in sodium rich soil.   Geoff Allix (16:55): So if you are... So we're talking about sodium, but if you're cooking with something like sunflower, or people who eat fish, there's a natural saltiness to some fish. To certainly sunflowers or vegetables that grow, there's seaweeds as you mentioned, is that not the same as adding salt to something?   Jack McNulty (17:22): It is, but it will occur in lower concentrations.   Geoff Allix (17:25): Okay.   Jack McNulty (17:26): So you're not going to have the same amount as if put in a one or two teaspoons of salt into your soup or something like that. So it's going to be much more diluted.   Geoff Allix (17:37): Okay. So it's worth saying, "Okay, I really can't eat sunflower or I can't eat mackerel or something those sort of things that might have natural salt in them."   Jack McNulty (17:48): Yeah. I mean there are other ingredients too, capers for instance, which are either salt or vinegar cured. Those are going to give you a little bit of a salt punch as well. Things like that you can use to increase the amount of salt. And again, that's just for flavor enhancement or adding aromas and things like that.   Jack McNulty (18:10): If you're doing something that you want to draw liquid, the only thing that you really can do there is really slowing down the process. So just use lower heat, longer cooking times. Because really what you're trying to do there is just break down the food element that you're cooking a little bit more. And that just requires a little bit of time. You want to use a lower temperature to prevent it from really burning, but you can still do that with onions for instance, you can soften them easily without adding salt to them. I do that because I like adding the flavor and it speeds the process up a little bit more.   Jack McNulty (18:46): If you're doing something with pickling or fermentation, you have to look for alternatives. So some alternatives would be using the starter culture, something like a yogurt base or something of that nature. Or a kefir or some other kind of brine that you've successfully used. And just adding a little bit of that will stimulate the fermentation or pickling process.   Geoff Allix (19:10): Could you, so I make sauerkraut. And so you could start with salt of that, but could I use the liquid from the previous week’s sauerkraut to start the next week’s?   Jack McNulty (19:22): Yes you could, yeah.   Geoff Allix (19:23): Okay.   Jack McNulty (19:25): You might need to still... Sauerkraut I mean, this is where salt really comes in to play an important role when it has to do with bacteria and things like that. So one of the reasons why sauerkraut has a fairly high salt amount is to protect that bacteria from forming. It eliminates harmful bacteria but creates good bacteria in the food itself. And that's why it's important to always keep that underwater, not allow the air to come in and whatnot. If you're just using the brine from the last time, you have to just really ensure that just stays in a cool place and it's submerged all the time. But it may take a little bit longer because there won't be quite as much salt in there just from that, but you could do that.   Geoff Allix (20:18): And we had a question from a member of our community, Sarah Bennett, who wanted to know your thoughts on these salt alternatives they're marketing, sort of low salt or low sodium salts. And I believe they're potassium chloride. So what are your thoughts on using those instead of traditional salt?   Jack McNulty (20:43): Yeah, it's mostly potassium chloride, which is often used in those low salt or so-called light foods, like light soy sauce or something like that. It is basically replacing the sodium with potassium. So potassium in this case would be odorless, it's weak in its flavor, and the one drawback can leave a sort of bitter or metallic aftertaste. It's mostly used in products, like low sodium salt, when it's combined with the sodium. So it's basically just diluting the sodium that's there and reducing the amount of sodium, but still functions a little bit like salt would. But again, you're going to have that little bit of an aftertaste. For me personally, I'm not a big fan of that because I place a lot of importance on the actual flavors and things of that nature.   Geoff Allix (21:46): And would it work to do the actual sort of process of breaking down the onion or the cabbage in sauerkraut? Does it do that?   Jack McNulty (21:58): Yeah. So lower sodium alternatives can enhance the taste and flavor just like salt. It can also help in preserves and ferments, so you can use it in that particular environment as well. Just be aware that little flavor amount and it's often also quite fine. There are two other considerations, it's quite fine so people tend to overuse it. So it's very easy to sprinkle too much on. And then you're sort of defeating the purpose because you're trying to create that flavor enhancement. And so you put a little bit too much.   Jack McNulty (22:38): So it's almost like the seatbelt thing, when seatbelt laws came in to affect, people wore the seatbelt. But then they felt like they can drive faster or crazier and get into more wrecks. It's a little bit like that in the sense that it gives you the safeguard, "Well I'm using low sodium." But then you use too much, and so you're defeating the purpose. And it also tends to have more preservatives or additives in lower salt solutions. So, I would prefer using something pure.   Geoff Allix (23:13): Yes. And there's another mentioned I've never heard of called liquid aminos.   Jack McNulty (23:17): Yeah. Liquid aminos. Well first of all, there are two kinds of liquid aminos, two major kinds. So the first is made with coconut product and it's basically just fermenting coconut sap with salt and water. And it creates something very similar to soy sauce, but with roughly 60% less sodium. So you have a product that you can use similar to soy sauce, but with far less sodium in a natural way. And just because it says coconut aminos, I know we have a big thing in the OMS world about coconut. It has nothing to do with coconut fat. And so coconut aminos are perfectly fine within the OMS lifestyle.   Jack McNulty (24:09): The other kind of amino is generally made with soya beans and is treating the soybeans with sort of an acidic solution and salt. And the soya based aminos function the same way as a coconut amino. But rather than having less salt, it actually has higher amounts of salt than soya sauce or tamari. So if you want to use aminos, I think it's pretty important to understand which one you're using, and how you want to use that. So they're not created equally. And in this particular case, I would say that the coconut amino would probably function a little bit better than the other type when just considering sodium. Also, aminos tend not to have a lot of preservatives, which is another plus when you're looking at that.   Geoff Allix (25:08): I'd like to just make a quick update before getting to our next question about salt. The Big Picnic is happening this July, and it's an OMS tradition for encouraging our community to prepare delicious OMS friendly foods to share with others as a way of raising awareness about the OMS diet. And the Ask Jack podcast already exposed you to loads of new cooking recipes and recipe ideas. And in case you need a refresher, you can find many tasty, healthy and OMS friendly recipes on the OMS website. As well as on Jack's website, myfreshattitude.com. Hopefully these recipes will inspire you for your OMS Big Picnic. And you can get more info on the Big Picnic on the OMS website, or please check the show notes for this episode, which will have more info.   Geoff Allix (25:53): So back to the questions about salt though. So when I was young, there was salt. And it came in a plastic tub and that was what was available. Now, there are loads of types of salts. So there's sea salt, there's rock salt, kosher salt, fleur de sel, colored salts, kala namak, so there's lots and lots of different types of salts. So firstly is there much difference? Where I grew up actually is a big sea salt area, there is Maldon sea salt, which is sort of well-known in the area. Is there a difference between sea salt and rock salt? Are these different things or is it basically the same thing?   Jack McNulty (26:40): Let's break it down. We just kind of do a salt 101 here. So the first thing to recognize is salt is salt, period. Meaning it's all sodium chloride, no matter the color, moisture content, crystal size, any marketing health claims that are out there, salt is salt. It's just sodium chloride. Doesn't matter if it's coming from the sea or coming from a rock mine. There is no regulation worldwide on how salt is packaged or any health claims made that may be made stating for instance, that this particular salt has some amazing health benefit. Throw all of that out the window. And what you're left with is sodium chloride, which is where it should be. But there are differences to consider, and those would be crystal size and shape. That's important in seasoning and dissolving. It's also important when reading a recipe. And most cookbooks aren't going to tell you these sorts of things, but salt changes in terms of its mass or volume, the type of salt that's being used.   Jack McNulty (28:00): So don't trust cookbooks. When they say you need a teaspoon of salt here, but what a teaspoon of sea salt is going to be is considerably different than a teaspoon of say, table salt. And we'll go into the differences in a minute. There's also, the other considerations are, are additives. Does it have any sort of anti-caking additives added to it? I think regulations state that up to 2% of table salt, for instance, can be an additive. Some kind of chemical or element that's going to prevent the salt from clumping or caking up. Then there's the whole iodine question. Does it have iodine added to it or not? Then some salts have different flavors added to it. So those are not naturally occurring and they're basically just added flavor, rosemary salt, lemon salt, that sort of stuff.   Jack McNulty (28:57): So the other thing you want to look at is what's left in the salt. So in some salts that are gray, for instance, they're unwashed, and they may have some organic or mineral impurities that are left in the salt intentionally. And those would be certain kinds of sea salts. So let's start there for a minute Geoff.   Jack McNulty (29:21): Sea salt, that's the first one that I'm going to talk about. There's refined and unrefined sea salt, and that's what is the big difference. The refined sea salts are mostly going to be removing the bitter minerals that are left behind after the harvesting. And that's usually done by dissolving and adding sodium hydroxide and carbon dioxide to the brine. That's going to remove any natural magnesium and calcium that's in the salt, and then allowed to just sort of naturally evaporate. And then it becomes harvested and dried and packaged in that particular sense.   Jack McNulty (30:04): So an unrefined salt is going to be much slower than a refined salt. It's basically just made through a progressive concentration of sea water that is just naturally evaporated. So it's moved from basically one pond to another, the concentration of salt increases as it's moved from one to another. And then as evaporation takes place, it just concentrates more until the salt is basically left at the top. So at the very, very top you'll have some natural flakes that are formed, and that's called the flower of the salt, and that's fleur de sel. And so as that's raked off or harvested before it has a chance to sink and mix in with other elements. It's a kind of a pure flake form of sea salt.   Jack McNulty (31:02): Unwashed sea salts may have a little bit of algae, clay, magnesium, and calcium in them. Sometimes they have a gray color. That's very common in France, for instance. With French types of sea salt, that sea salt is allowed to just sort of sink to the bottom. And then as it's mixed a little bit with the clay in the bottom of the seabed, wherever it is, it takes on this particular color. And it takes on some of the attributes of that clay. So it actually may have little lumps of clay in it. And of course, we talked about the fleur de sel just now. So that's sea salt.   Jack McNulty (31:49): Table salt is basically either processed rock or sea salt. There's no regulation. So if you come across something that just says table salt, you don't really know what it is unless it's stated on the package. And it's basically those small cubic sort of uniform crystals that you might see in any restaurant saltshaker. The really fine kind of salt, that's a table salt. It dissolves well, but as a seasoning it's not the best in the world because it doesn't evenly cover the food. It doesn't just stick on the food; it basically can go in different clumps depending on how you put it on the food. So it's a little bit tricky to season with and most...   Geoff Allix (32:37): Because it's fine, would it work quite well for say baking? Something where it needs to be mixed in really well? Because I personally wouldn't use something like a salt grinder for making bread. Because the bits of salt are too big.   Jack McNulty (32:54): Yeah, I tend to use a finer salt in baking recipes or something of that nature. Or dissolving in pasta water, for instance, I will go with a finer kind of salt. Whether that's technically a table salt or not is probably up for argument in terms of how you want to label it. I tend not to buy the really fine table salts because they generally have a lot of additives in them, which I'm not a big fan of in terms of anti-clumping material, and things like that.   Jack McNulty (33:39): So kosher salt would be the next one. So kosher salt is mostly available in the United States. It's really hard to find kosher salt throughout Europe or perhaps in Australia. I'm not 100% sure, but I doubt it. It's a salt that's used during the kosher process. It has nothing really to do with being kosher at all.   Geoff Allix (34:01): I was going to say, because I'm not Jewish, but I would've thought salt was kosher. But it's not the kosherness of the salt, it's the use of it in the...   Jack McNulty (34:12): Exactly, so traditionally it was used by butchers that cleaned the meat of all the blood. And then they would have a fine layer of salt over the meat to enhance drawing out of more blood and liquid from whatever they're making as kosher. So that's really the traditional use and that's why it's called kosher salt. But the nice aspect about it is it’s generally a coarse salt with flaky crystals that cover the food evenly. And that's why it was favored by these butchers. But it's also one reason why it's very much favored, especially in America with chefs, because it's very easy to season with it. You can grab it easily, then you can season food just by sprinkling it on. And a lot of people like using it that particular way, that's a very popular salt. So there are no regulations, sometimes it has iodine added to it and sometimes not. Generally kosher salt has no other kind of additive in it, no anti-clumping stuff, that sort of thing.   Jack McNulty (35:28): I think it's probably the number one salt that's used in most households in America. Although I could be wrong on that. I know growing up, I also had the same thing as you, it was always Morton salt and a little blue container that was very fine. I remember that completely.   Jack McNulty (35:48): So rock salt would be the next one. And rock salt mostly refers to just larger chunks of salt with both culinary and non-culinary uses. It's often used to make ice cream or recipes requiring some kind of crunchy salt on top of a baked good or pretzels, something like that. And it's often sold for grinders as if putting salt in a grinder is going to create some sort of mystery benefit. All it does really is just make the salt smaller, that's it. It does nothing else other than that.   Geoff Allix (36:30): I mean, so well you have... Well so my wife's got, she likes Himalayan rock salt, which we'll go into, there's no benefits to it. But we do get a choice of how big the grains are. So because it's in a grinder you can actually, you can have fine or coarse. So there is a benefit to that. To be fair…   Jack McNulty (36:56): Sure. And you can hold the grinder over food like a pepper mill. You can control how much and where it goes on food and that sort of thing. It would be generally sort of a post-seasoning. I don't know if it would be really good as you're cooking to use a grinder, but that's just my own personal opinion on that.   Jack McNulty (37:19): Pickling salt is another common salt that you, that might be out there. And it's very fine grained. It's always without iodine or any anti-caking ingredient added to it. Those tend to create cloudy brines, and that's why it's always sold without that. So it's always going to dissolve well, and it's always going to keep liquids clean. So if you come across a pickling salt, that would be what that is. And it's generally just rock salt that's really fine. Or it could be sea salt that's also very fine.   Jack McNulty (37:55): Flaky salts, which I think you talked about Maldon earlier is the most, and that's the most famous of the flaky salt.   Geoff Allix (38:02): So is it actually heard of internationally, isn't it? I’ve heard if it because that’s where I grew up.   Jack McNulty (38:11): I'm sure it's available in America, it's definitely available here. I can get my hands on it pretty easily. But it's like of all flaky salts, Maldon just happens to be really famous, but it's just salt crystals with large surface area. And they're often brittle and quite crunchy. So they're excellent finishing salts. Most people don't cook with Maldon salt. They crumble a little if you will, on top of the food and it gives you that little crunchy salt hit, which some people find quite appealing, me included. Kala namak of course, most of us have heard of that. And if you're cooking vegan at all, you probably come across it.   Geoff Allix (39:00): I would say I'd never heard of it prior to cooking. But now that I do things like a scrambled tofu, then it's essential.   Jack McNulty (39:11): Exactly. So it's a black salt that's mined in Himalayas, but it's only mined in India. And it's the reason why it has its color, and it's sort of sulfur property is, it's after the rock salt is mined, it's cooked in a kiln. And this changes the trace elements to create sort of this sulfur compound. And that's why it has that particular lovely aroma of rotten eggs. Some people actually like that quite a bit, but it worked well towards the end of the cooking process. In a tofu scramble, as you alluded to. It doesn't hold the flavor very long in cooking. So if you start with it in the cooking process, you're going to be disappointed in the actual aroma. If you use it towards the end of the cooking process, it's much more effective. So if I'm making a tofu scramble, I would add a little bit of normal salt first and then just season at the end with it to give that sort of boost of egginess.   Jack McNulty (40:26): So the other salt that you alluded to of course, is the Himalayan pink salt. And let's just put it out there, despite the claims there's absolutely no evidence of any health promoting aspect of Himalayan pink salt. So the reason why it's special is it's excavated by hand, no machinery involved, in mines in Pakistan. So it's only coming from Pakistan. The color comes from trace elements found in the mine. So it can range from light pink to almost a bright red. It can come in different sizes. But unfortunately, people just seem to be eager for untapped sources of health benefits. And I think it's easy to fall for the marketing claims that were made about Himalayan pink salt, and dissolving it as aroma therapy in spas, or using it in food, and things like this. It's still sodium chloride bottom line, and there's nothing immensely special about it other than it's a pretty cool color.   Geoff Allix (41:43): Right, so it looks nice in a glass grinder you can see, looks nice on the table.   Jack McNulty (41:52): Totally agree with that, Geoff. But is it worth the extra price? I think that's a decision that we all have to come to terms with ultimately.   Geoff Allix (42:01): And when you get these big, huge, great big pieces of salt, which are a lovely color, and they suppose you have psychic abilities, then that's probably beyond either of our knowledge.   Jack McNulty (42:14): I've not heard of the psychic abilities.   Geoff Allix (42:15): Oh yeah. There’s big pieces, large and they're quite often lit and they apparently are good for, I'm not sure what chakras are.   Jack McNulty (42:26): The other thing just to be aware of is, contrary to health benefits there's actually something detrimental found in a lot of Himalayan pink salts. They can have fairly high levels of lead as a trace element. And so that's just something to be aware of when deciding to include or not include a pink salt in your diet.   Geoff Allix (42:55): And you wouldn't know this, it wouldn't say?   Jack McNulty (42:57): No, right.   Geoff Allix (42:58): No, okay.   Jack McNulty (43:01): No. But now we're getting into sort of edgy territory because when you think about it, the majority of salt these days, or at least 50% is coming from the sea. And unfortunately most of those salts these days are going to be contaminated with microplastics. Which of course aren't going to be mentioned either, but that's just a fact of life with anything coming out the seas these days. You're going to be exposing yourselves to microplastic, which is an unfortunate byproduct of the human condition these days.   Geoff Allix (43:37): Yeah. I was thinking of Maldon sea salt, I'd absolutely promote it because it's from where I grew up. But it is quite near to the Thames Estuary, which is the river that flows out of London. Which might have some trace elements of things in it. And it's also on the North Sea, which just has a number of major industrial areas flow into it.   Geoff Allix (44:00): So if we could sort of wrap up, what I take from this is actually the biggest takeaway that I've got is the best thing we could do is reduce our consumption of processed food. And if we're, if someone's eating out on every meal, then they might be getting a lot of salt, I'm assuming. If we're having the occasional meal out, you can probably have an idea of what's likely to be. Sort of think, "Well okay, if I can see what the ingredients are and then they might be cooked in something salty. But there's not going to be a huge amount of salt." So basically we're looking at that processed food and bread as sort of big areas it's coming from. Not to worry too much about actually using salt in cooking. Would that be...   Jack McNulty (45:01): Yeah, I think that's a good place to land with respect to salt and sodium intake. Sodium is not as much of a villain as most people want to make it out to be. Of course too much is going to create problems. As we talked about earlier, too much of most anything is going to eventually create problems. But too much sodium clearly is a problem within the human diet. And it's easy to cut back just by cutting back on some of the lifestyle choices that most people make. And that of course is a major element of the OMS program anyway. So if you're sticking to that, I mean not going out to eat all the time, really watching your processed foods, not having a lot of snacks that are littered with salt, then you're probably not going to have to worry too much about over salting your food when you're cooking at home.   Jack McNulty (46:06): As long as you're buying products that are generally low in salt to begin with. And that usually means whole foods, so that's a great place to start. I think that there are some other factors to consider when you're looking at what salt to purchase. The dissolving aspect, how easily does it dissolve in liquids? Often salt is needed in soups or pasta water or something like this. And so dissolving becomes a consideration. Iodine would be another consideration. Let's face it, iodine, I'll just say my own perspective on iodine.     Jack McNulty (46:55): So this is my view, I eat very few processed foods. I eat out rarely, I often bake my own bread. I live in Europe and I know that the soil here is iodine poor. And so if I'm not using iodine salt to some degree, I'm probably not getting enough iodine in my diet. Which is actually the fact according to some of the blood tests that I've taken over the years. And so I will use at times iodine salt just for this particular reason. And so that's a personal decision that everybody has to come to and understand what's your own situation like. But having iodine in the salt, that’s no big thing in my opinion. And that's something maybe we should encourage a little bit more.   Jack McNulty (47:55): I think the other thing to consider is seasoning before or after, as a flavor enhancer. How am I going to use that particular salt? I'll run it down so what I have always in my kitchen is, I have a fine iodized sea or rock salt on hand that I use when I'm putting salt in pasta water or baking, or if I'm creating some kind of brine or something of that nature, that's the salt I would use. When I'm just using a primary seasoning salt, I always have on hand a fine sea salt or something like a gray sea salt. That's going to be milled a little bit finer so it spreads out rather evenly. As a finishing salt, I will always have some kind of flaky salt or fleur de sel. I usually have two or three different kinds depending on my mood. And I always have some kala namak on hand. I don't tend to have any pink salt on hand. And so that's basically my opinion as a cook. And that's what I tend to have. I usually have in my pantry have about six or seven different kinds of salts.   Geoff Allix (49:20): Okay. I think I've learned an awful lot from that. And with that, thank you for yet another fascinating episode, Jack.   Jack McNulty (49:27): Well, thanks Geoff. It's good, it's really excellent. I could probably talk about salt way longer than most people want to hear about it.   Geoff Allix (49:37): And so we're looking forward to your return for the next Ask Jack episode, which is in the autumn or fall, as you would call it. And that will premiere on the 28th of September. So if there's any questions anyone would like answered, then do please get in touch. You can email podcast@overcomingms.org, and until then have a great low salt summer.   Jack McNulty (50:02): Thanks, Geoff. And I'd just like to remind everybody that be sure to check the OMS website under podcast if you want any of the show notes, which we will put up once the podcast appears on the website.   Geoff Allix (50:15): Okay. Thanks very much.   Geoff Allix (50:20): Thanks for listening to this episode of Ask Jack. Please check out this episode’s show notes at www.overcomingms.org/podcast, where you'll find all sorts of useful links and bonus information. If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org.   Geoff Allix (50:39): You can also subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode of any of our podcasts. Ask Jack is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity, and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and it's array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly eNewsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   Geoff Allix (51:34): The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

Coffee Break with host Geoff Allix | S4E17

Welcome to Living Well with MS Coffee Break #33, where we are pleased to turn the tables and welcome our very own very own podcast host Geoff Allix as our guest!   Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.   Welcome to Living Well with MS Coffee Break, and I am NOT Geoff Allix. I’m Alex Twersky, and I am the creator and producer of the Living Well with MS podcast series. And I’ve been proud to work with Geoff Allix from day 1 as our intrepid host since the show’s launch all the way through two spinoffs – Coffee Break and Ask Jack – and now 4 seasons. So why am I the one narrating this episode and not Geoff? Well, let’s find out.   Geoff’s Bio:   Geoff Allix hails from Devon in England and was diagnosed with multiple sclerosis in 2015. Geoff's father also had MS, and sadly died at the age of 54. When he himself was diagnosed, Geoff was determined to do whatever he could to remain well. Once he was told that he "almost certainly" had MS in May 2015, he and his wife launched into action. They Googled as much as they could about the condition. Shortly before Geoff was formally diagnosed in September 2015, they came across Overcoming MS and the 7-Step Recovery Program. He has been on the program since then, and, although his walking has gotten worse, he’s certain that the Overcoming MS program is critical to maintaining his wellbeing. Geoff works as computer consultant and is a dad to two children. Geoff serves as co-ambassador to Overcoming MS’s South West Circle and hosts the Living Well with MS podcast.    Questions:   Geoff, welcome to the other side of Living Well with MS Coffee Break. OMS is celebrating its 10th anniversary this year, and our podcast will mark its 100th episode this August. So this time around, we thought having you in the hot seat would allow some of our fans old and new to get to know more about you. Since the purpose of this series is to better get to know the diverse members of our community from around the world, who better than you to fit that bill. Many of our audience knows you as the podcast host, but there’s so much more to your service to the OMS community, and we’ll get to that, but for the moment, can you tell us a little about your day-to-day life in the UK, in Devon? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? Many of our audience know you as the host of this podcast from its very inception, but you also serve the OMS community in many other ways. Let’s start by learning more about your work as an Ambassador for the OMS Circle in Devon. Tell us a little about that, how you got involved and what this work has meant to you and your local community? Speaking of local community, you also recently represented OMS at Delamore Art, an exhibition where OMS was one of the featured charities. Can you tell us a bit about that? You celebrated a birthday recently, and you did something a little outlandish to celebrate life but also raise money for OMS. What death-defying feat was that Geoff? Just wanted to take a quick pause to make a couple of announcements that may be of interest to our community. The OMS Big Picnic is coming up again in July. This is a great event for members of our global community to organize their own picnics worldwide featuring OMS friendly cuisine. You can learn more about it on our website at overcomingms.org. Also speaking of food, tune into our next webinar featuring nutritionist Sam Josephs presenting on easy and OMS and family-friendly recipes and foods. It’s the perfect kick starter for your own Big Picnic. The webinar streams live on June 29, but you can catch it anytime on replay. Get more info on all of these delicious happenings on our website, overcomingms.org. OK, back to you Geoff. Let’s shift gears a little bit and talk about what must be scratching the curiosity post in all our listeners’ minds – what’s it like to host a podcast, and for nearly 100 episodes no less? How has this journey been for you? What’s your favorite thing about hosting the Living Well with MS podcast, apart from working with me, of course? Did you think when you started that you’d still be going strong 4 seasons on, and nearly 100 episodes under your belt? I am going to be the last person to ask you if you have any favorite episodes, because I am sure you love them all equally, like your kids. But are there any that stand out for your personally, or hit you close to home? Final podcast question, and I am particularly curious about this one, but how would you like to see it evolve in its 5th season and beyond? Apart from the podcast, Geoff, are there any other fixtures of your life, whether related to OMS or not, that would help our community get to know you better? Geoff, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know its podcast host a little better. One last question before you go, and as you very well know, it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?   Three Interesting Facts About Geoff:   In May 2022, Geoff completed a tandem skydive. Geoff’s daughter is currently filming a primetime TV show. Geoff was a serious rock-climber and once climbed with a world champion.   Geoff’s Links:   Geoff is an active Twitter user, and you can follow him here   Coming up on our next episode:   Starting July 8, check out the next new episode of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. In this instalment, Jack gets a little salty by exploring the world’s most popular seasoning and sharing healthy ideas for salt subtitutes.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E53b Transcript Coffee Break #33 with Geoff Allix   Geoff Allix (00:01): Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix.   Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.   You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.   Alex Twersky (01:10): Welcome to Living Well with MS Coffee Break. And I am definitely not Geoff Allix. I'm Alex Twersky, and I'm the creator and producer of the Living Well with MS podcast series. I've been really proud to work with Geoff Allix from day one as our intrepid host since the show's launch, all the way through two spinoffs, including this one, Coffee Break, and Ask Jack, and now four seasons in.   So why am I the one narrating this episode and not Geoff? Well, we'll find out in a second, but before we do, I'd like to introduce you to Geoff Allix. Geoff Allix hails from Devon in England, and he was diagnosed with MS in 2015. Geoff's father also had MS and sadly passed away at the age of 54. When he himself was diagnosed, Geoff was determined to do whatever he could to remain well.   Once he was told that he almost certainly had MS in May 2015, he and his wife launched into action. They Googled as much as they could about the condition. And shortly before Geoff was formally diagnosed in September 2015, they came across OMS and the seven-step recovery program. He's been on the program ever since, and although his walking has gotten a bit worse, he's certain that the Overcoming MS program is critical to maintaining his wellbeing.   Geoff works as a computer consultant and is a dad to two children. Geoff serves as co-ambassador to Overcoming MS's Southwest Circle, and as you all know, also hosts the Living Well with MS podcast. Geoff, welcome to the other side of Living Well with MS Coffee Break.   Geoff Allix (02:48): Hello.   Alex Twersky (02:50): Well, it's a bit unusual to have you in the guest chair, so I'd like to explain to our audience why that's the case. Since OMS is celebrating its 10th anniversary this year and our podcast is actually going to mark its 100th episode this August ... Can you believe that Geoff, 100 episodes? I don't know if you've registered that in your mind, but-   Geoff Allix (03:11): It is crazy when people talk about an episode and you have to sort of rack your brain through which one it was because there have been so many.     Alex Twersky (03:19): It's like a fog, but that's why, precisely why, we want to come out of the fog and celebrate almost 100 episodes, coming up on August 29th, it will be 100. But in celebration of our 10th anniversary and to mark our 100th episode a bit early, we decided this time around that we'd have you in the hot seat and allow some of our fans old and new to get to know a bit more about you.   And since the purpose of this series is to better get to know the diverse members of the OMS community from around the world, who better to fit that bill than Geoff Allix? Many of our audience knows you as our podcast host, but there's so much more to you and your service to the OMS community, which we'll get to in a moment. But for the moment, perhaps you can tell us a little bit about your day-to-day life in the UK, in Devon.   Geoff Allix (04:15): So I work from home, but I've actually worked from home from a long time before the COVID pandemic, when now everyone works from home. But yeah, I think, how long, maybe 16 years, I think I've worked from home. I used to travel quite a lot as an IT consultant. I was traveling all around the world, really, to the point where actually when I got married, the six weeks before my wedding, I was in different European countries each week. So thankfully my wife took care of arranging the wedding, and I just turned up on the day.   And then I moved into a role where I basically create content for Microsoft. So a lot of their online content, I work, I subcontract to them, creating content for them. So it's mostly from home. It did involve a lot of travel to Seattle, but the pandemic has put a stop to that. That may start in a bit, hopefully not as much as I did, but yeah, sometimes international travel, mostly sitting in an office in my garden.   Alex Twersky (05:21): So Geoff, now I know that any time I need someone to grouse to about problems I'm having with a Microsoft product, you're going to be first on my call list.   Geoff Allix (05:30): Yeah. I'm pretty good with all those sort of things, but not printers. Anyone who works in IT, all of us hate printers because they're a dark art, how printers work.   Alex Twersky (05:41): They are indeed. They're a sorcerer's tool, but hopefully most of us more eco-conscious folks are weaning ourselves from printing stuff because we're all living in the throes of our digital tools, right?   Geoff Allix (05:57): Well, actually, yeah, to be honest, mine is a scanner with a thing underneath that very occasionally pumps out paper.   Alex Twersky (06:04): Awesome. Well, I wanted to focus in a little bit on your actual experience with MS. Just to find out when you were diagnosed with MS, and how did you initially deal with that? Because we talked a little bit about that in your bio, but maybe just go a little deeper to understand what that was like for you and how you handled the situation and persevered.   Geoff Allix (06:30): So well, the original story goes back a really long way. I think, when would it be, about 1998, something like that. And I lost feeling in all my fingertips, and they sent me to a specialist. I lived in London at the time. So it was a big London hospital, top specialist. And it's very unusual. There’re two different nerves that go down through your hands. And so it's really unusual to lose all sensation in all the fingertips. They were really perplexed about this. They couldn't work out what it was. Six months later, it cleared up completely. And then they said, oh, well, that's okay then.   And then just odd things like that, which would occur and then go away. And then doctors would be, well that's okay, it's gone away. It's fine. And then when I was diagnosed, it was because of double vision. So I had, not all the time, but double vision would come and go. And I went to an optician. The optician said, "There's absolutely nothing wrong with your eyes. You're seeing perfectly. Everything's absolutely fine. But I only look at inside the eyeball, and something is going wrong outside the eyeball because your eyes are both pointing the right way. They're seeing perfectly. It's just your brain is doing something with the signal and mucking it up. So you need to go and see a neurologist."   And that's what then led onto initially an MRI scan. I thought I was being clever by going private, which I'd never done. I'd never used private medical insurance before, but I had insurance from work. And so I thought I'd jump the queue and get it sorted quickly. And what actually happened is the private practitioners didn't want to do all the tests because some of them were very expensive. So they said, "You need to get to the back of the queue with our National Health Service." So actually by trying to jump the queue, I then extended the whole situation because I then went to the back of the queue, which I would've been in earlier had I just gone with the National Health Service, which is a fantastic thing in the UK. I know everyone doesn't have the same level of health services, but we're very fortunate for that.   And so I was told I almost certainly had MS, but I didn't definitely have MS. And so that's why I had a very long gap between initial diagnosis and final diagnosis. And in that time, I didn't have any support or guidance or anything. I was just told, "Yes, you've almost certainly got MS, but we need to do all these other tests." I took it pretty well, to be honest, because, as you said, my dad had MS. And it was very weird actually because I still thought MS meant wheelchairs. I was convinced that everyone with MS was in a wheelchair except my dad, which is very strange because obviously I knew my dad and he was never in a wheelchair. He died very young, and there were certainly complications caused by having MS. He had some sort of bladder infections and things that led on to other stuff.   But yeah, when I got it and I thought, well, okay, it doesn't have to be, and you know, he was still mobile right through his whole life. And so I thought, okay, there's this sort of public perception and I know there's a slightly different reality. So it wasn't as bad as some people, where they're really so devastated. And also because I wasn't, you know, when people are 20 or something like that, I mean, I was in my mid-forties, so I'd already run marathons and climbed mountains and done all these crazy things.   Alex Twersky (10:18): So in some ways, Geoff, you kind of have your eye doctor to credit for at least finding that first important clue.   Geoff Allix (10:29): Well, actually saying that there's nothing wrong with my eyes. Yeah.   Alex Twersky (10:32): Yeah, I guess-   Geoff Allix (10:33): He did reveal to me, because I was 45 at the time, he said, "You seem to come in about every five years." And I said, "Yeah, well my wife's always been a glasses wearer, so she said, oh, you should go in. They check for other stuff." And he said, "Oh, you do seem to come in. That's good. Yeah, we do check for other stuff." And he said, "Now, your eyes are absolutely ... You've got brilliant eyesight. It's absolutely fine." He said, "But you're not going to come in again in five years’ time and me tell you there's nothing wrong." I said, "What do you mean?" He said, "Well, no one hits 50 and doesn't need reading glasses." And he was right.   Alex Twersky (11:03): I'm a testament to that myself.   Geoff Allix (11:03): I have my reading glasses.   Alex Twersky (11:08): So tell me, Geoff, so you get this diagnosis. I mean, you have a little bit of a leg up because you've had experience with MS in your family with your dad. But then you sort of, it seems like you and your wife kind of hit the contemporary version of medical research, which is Google, and you come across OMS. So what was that like for you? How was the experience of finding the OMS program, and why did you decide to start following it? What about it appealed to you, and how did you end up committing to it?   Geoff Allix (11:48): So yeah, I mean, so Dr. Google isn't always the best resource, I think most actual doctors would say, but we were left with nothing because I was told I almost certainly had MS, but all of the support that I now have with neurologists, MS nurses, various organizations, that wasn't really open to me because I didn't definitely have MS. I kind of knew I did. I mean, I knew I had MS. I had all the symptoms I knew. The neurologist told me I did.   But until you get formally diagnosed, then you don't get any of the support, treatment, or anything. So we were left with Google, and there's a lot of, I was going to say, I think charlatan is the word. I'd say charlatan is too strong, but I don't think it is because there's a lot of people who are peddling cures who say, you know, you could buy this and it's a mixture of different vitamins and minerals that will effectively cure you from MS. And you think, wow, that's really expensive and it doesn't sound like it would necessarily work.   So there were a lot of things that were quite expensive, and a lot of books that were, again, quite expensive. And then it was my wife who came across OMS and she said, "Look, there's these guys, and they're going to give you the book for free." I was like, "Okay, there's no strings here?" It was like, no, no, they're just going to send you a book. And I've always had a bit of a scientific background, and it just really appealed to me, you receive it and there's just endless references in it. So it's scientific references. It's written in a scientific way. So it was very evidence based. It was full of evidence, which is backed up with citations and references. And so that very much appealed to me. And the fact it wasn't trying to take any money from me at all. So it clearly wasn't there to make a fast buck.   Alex Twersky (13:45): So you sensed a bit of integrity to it. And also obviously you understood that there was a heavy foundation, a heavy kind of scientific backdrop to it. So that led you to decide to follow it. Now, since many of our audience know you as the host of this podcast from its very inception, and I personally have to say, you're amazing and I love working with you, and that's not a plug, that's my genuine feeling. But apart from embracing OMS yourself, at some point, you also decided to serve the OMS community in other ways, apart from this podcast.   One of those ways is your work as an ambassador for the Circle in Devon, the OMS Circle in Devon, or maybe more appropriately the Southwest Circle is what it's called, but I'll leave that to you to explain in more detail. So could you tell us a little bit about that and your role as an ambassador, and how you got involved working with the Circle and what that's meant to you and your local community of fellow OSMers?   Geoff Allix (14:58): Yeah, so I think it really helps, having a community. And when I was first diagnosed, I didn't have any form of community, and where I live, so the southwest of the UK is, it's quite a spread-out place. It's not big cities. There are a couple of cities, but they're quite a long way from where I live. So it's quite rural, and so I didn't have really anyone to turn to.   I went on an OMS retreat, which was life changing, and I made a number of contacts through that. And that was really beneficial. But in terms of meeting people, knowing people, there was no one local. There was a sort of precursor. Before Circles, there were local groups set up in the forum. And I did meet one other person in Devon, but they were the other side of Devon. It was a good probably an hour and a half drive. And then we met up once and then this guy was looking to move to New Zealand, so that never happened again.   And then, so when the Circles idea came about, it's really, I mean, to be honest, selfishly, I wanted to have more of a community and people to speak to and that were on very much the same wavelength as me. It's very difficult, I think, if you've got MS. No one fully understands it unless they've got MS. Even to the extent, actually, that they understand that we don't have the same symptoms as each other. We all know all of us are different, but we accept that. People who don't have MS, however much they care about you, your family and so on, they don't fully understand. And so it's really beneficial, I think, to have a community.   So setting up a what was at the time a North Devon Circle meant there was a small group of us. There was another South Devon Circle set up because it is quite a large county. So it was worthwhile having two, and another one in Cornwall, which is the neighboring county. And the ambassadors of the three, most of the time, myself, Tessa, and Sean, we did meet up. So we met up as ambassadors a couple of times, but they were quite small Circles.   And then the pandemic happened and we couldn't meet up. And between the three of us, we made the decision that if we're going online, it would actually be beneficial if we joined the three Circles together so that we had enough people, there would be a regular conversation going on. And we moved to WhatsApp. So we have a regular WhatsApp chat going. Actually, it's taken off from that original beginning where we joined together because we thought we needed to, you know, you couldn't have a WhatsApp chat between four people. So now I think we're up to about 45 or something in Southwest. So it's a very, very lively, regular chat, and it's become a really close group. And we met up recently at an art event in south Devon. And hopefully we'll go back to actual physical meetings, but I think we'll always carry on with the virtual side of it as well, because it has been so beneficial. And I think that some good things can come out of terrible things like the pandemic. And I think that's one of them, we've embraced that side of things, that virtual side of things.   Alex Twersky (18:36): That's amazing. And plus with your magic touch with technology, I'm sure if they ever have trouble connecting the entire cohort, you probably dive right in and patch it up, right?   Geoff Allix (18:52): I do, yeah. I mean, I sort of do some bits like that, but then there's also some great ideas. People like Sean, he's not an ambassador anymore, but he was the Cornwall ambassador, he came up with a fantastic idea of how to do an exercise, because we were like, how can we do exercise? We're all at home. We used to do things in groups, but now we can't. So how are we going to encourage each other to exercise? And he came up with this fantastic idea that we're going to travel the world in a hot air balloon, which is pedal powered. He found some painting of this pedal powered hot air balloon.   And the idea is we're all going to sit in this thing and pedal away and travel around the world. And he said, "So all of our time doing whatever exercise we do all counts as miles towards our destination." So we travel the world in a hot air balloon and find out the interesting places we get to. And then people tell their stories about travels in their past. We drop in on famous people like George Jelinek, and have a chat with them. And it's just been really useful. So just, yeah, I'm not necessarily the ideas person, but yeah, technology I'm okay with.   Alex Twersky (20:04): Boy, that's a phenomenal idea, and kudos to Sean. I think that's Sean Kressinger, right?   Geoff Allix (20:09): That's right. Yeah.   Alex Twersky (20:11): And so kudos to him for that. And if any ambassadors or Circle members are listening, you can note that one down and imitate it. It'll be flattering.       Geoff Allix (20:21): Well, I mean I'm happy to pass, yeah, if anyone wants to get in touch about that, happy to tell you how we do it. It's pretty easy. We just do it on Google Maps and work out our mileage. I think they've done it around Ireland. One of the Irish groups did it. They traveled just around Ireland. And now we are just going around the UK this year. And yeah, you can do it all sorts of different ways.   Alex Twersky (20:40): That's phenomenal. And since we're on the subject of local community, you also recently represented OMS at Delamore Art, which is an exhibition where OMS was one of the featured charities. So can you tell us a little bit about that experience?   Geoff Allix (20:56): Yeah. So this was the other ambassador Tessa, who's based in south Devon, she's an artist. And I have no skills as an artist. She's a very good artist. That's her profession. And she decided to do something for OMS, and the Delamore Arts Foundation, it's like a country house with lots of art in the gardens, as well as art galleries. And it was their, I think it's their 30th year, and OMS's 10th year, and they have a charity each year that they support.   And so this year Tessa arranged to get their support. And there was lots of art, which was being auctioned off for OMS, from postcards done by artists who you didn't know who they were until you actually, unless you won it, and right up to full sculptures and all sorts of works of art. So incredible things. And then we had an evening-   Alex Twersky (20:56): You spoke there, right?   Geoff Allix (22:00): I did, yeah. We had an evening there and I was asked to do an introduction. Because there's a new CEO at OMS, I thought I was introducing him and saying a lot about OMS. And then I was told a couple of days before, actually he's going to do all that bit. Can you just talk about what you get up to? And actually, I quite like doing things informally. So whereas before I had a script, where I had to say all these important things, then I didn't have a script and I just had a chat with the audience and everyone liked it. So it was good.   Alex Twersky (22:41): Much like you do on the podcast, which is what I and I'm sure many, many thousands of our community appreciate every 10 days when you pop into their Apple Podcast feed or wherever they get the podcast. But speaking of you specifically, Geoff, I mean, I know that you recently marked a birthday, and happy, happy belated birthday, and you did something a little bit outlandish to celebrate life, but also to raise a little bit of money for OMS. So can you tell us a little bit about the death-defying feat that you accomplished?   Geoff Allix (23:17): Yeah. So my birthday was actually back in March, but this was a present from my wife. And I've always liked adrenaline sports. So I was a very keen rock climber when I was younger. And then now I live by the coast and I was a keen surfer, mountain biker. Those things somewhat curtailed when I had MS. The balance wasn't so good. But I did carry on snowboarding for a while, so I've had a few snowboard trips since I've had MS, actually. And I like adrenaline-based sports.   So she booked me a sky dive. And it wasn't in this country. I don't know if it's a worldwide thing, but in this country you can certainly do charity skydives where you don't pay for the skydive. The money comes out of the donations. But she'd just paid for it. She just said, "Well, for your birthday, I booked you a skydive."   And I thought, well, I should do it for charity. If I'm going to do it, it's the sort of thing people would sponsor you for. So I did it for OMS, and actually that way it meant because we'd already paid for it, then more money went to the charity, which I was grateful for. And yeah, it was fantastic. So because I've got MS, they put me with the top instructor. We went from 15,000 feet, which is, I didn't realize that's the highest you can go from, well, higher than that, you need oxygen. So it's the highest normal people can go. And I was strapped to an instructor. I didn't have any choice about jumping out of the plane. You literally didn't even pause. They just push you out basically. So we were the first people out of the tandem people. So yeah, we couldn't really have held everything up anyway.   So you just get pushed out the plane. You do free fall for about a minute or so. You're going about 160 miles an hour. It was fantastic. It was a beautiful clear day, and I could see all the way across the whole, from both coasts, the English Channel all the way across to the Atlantic, across to Wales. You could see fantastic distances. And on the way up, the plane, the guy and the instructor had got the measure of me and he said, "Oh, okay. You like adrenaline sports. Okay." And then once they open the chute, they give you the controls. They actually have their own straps as well. I think they can override what you're doing. So you do sort of feel like you're in control.   And he was just going, "No, pull the right one more. Now pull the left one. Now pull the right one." And then we came in very steep as well. It felt very steep, anyway. And I said to my daughter, who was down where we landed, I said, "Wow. It felt like we were spinning around a lot," but I'd seen other people come down, do jumps. I said, "You know, same as everyone." And she said, "Oh yeah, everyone turns a bit." She said, "But you were turning a lot more than everyone else." So I think getting the head instructor, who got the idea that I liked adrenaline sport, to get me spinning around pretty fast and also coming in pretty fast landing as well. So it was fantastic. I'm so grateful for everyone who did donate towards OMS. All I did was jump out of a plane, to be honest.   Alex Twersky (26:37): Well, we're grateful to you for making it a fundraiser. And your appearance on this podcast is a testament to the fact that you not only survived but had a great time.   Geoff Allix (26:47): Actually, the Delamore Art event was the very next day as well. So it gave me something to talk about, as well.   Alex Twersky (26:54): Excellent. Excellent. Well, thank you again for earmarking OMS as your charity of choice for that great experience you must have had.   And I wanted to take a quick pause here to make a couple of announcements that may be of interest to our community. First and foremost, the OMS Big Picnic is coming up again in July. And this is a great event for members of our global community to organize because they can organize their own picnics worldwide, featuring OMS-friendly cuisine. You can learn more about that on our website at www.overcomingms.org, that's www.overcomingms.org.   And speaking of food, tune into our next webinar, featuring nutritionist Sam Josephs, presenting an easy and OMS family-friendly set of recipes and foods. It's really the perfect kick starter for your own OMS Big Picnic. The webinar streams live on June 29th, but you can catch it any time on replay. So you can get all that info and tap into all those delicious recipes and happenings on our website. Again, that's www.overcomingms.org.   Now back to you, Geoff. I want to shift gears a little bit and talk about what must be scratching the curiosity post in a lot of our listeners' minds, which is what's it like to host a podcast, and especially for nearly 100 episodes, no less. How has that been as a journey for you?   Geoff Allix (28:28): In terms of this podcast, it's been hugely beneficial for me. So I did it because I was doing well on my MS journey. My neurologist said, "Oh, you're doing extraordinarily well. Everything looks really good. Your improvements are beyond what we'd expect to see with disease modifying therapy alone." So he was like, "Yeah, whatever you're doing, it works." So I thought I wanted to give back, and that's why I wanted to do it.   But actually it's been hugely beneficial because obviously I get to speak to, you know, I don't miss an episode. Other people are like, "Oh, I didn't catch that one." I obviously catch every episode. And also, I've actually made personal connections with a lot of top neurologists, top nutritionists, top exercise experts. And I've got to know some of them and I can ask them direct questions.   And also with the podcasts, when the recording's finished, sometimes I'll ask them a personal question that might not be of interest to the guests, to the audience, rather. So actually, it's been hugely beneficial for me because I've just found out vast amounts about MS, and to the point where I go and see my neurologist and he knows that I know everything about all the new things coming out, new drugs that are available. He knows that I know all of that because of all the people I speak to. And he knows the people I speak to. And I speak to people that are senior to him. So it's hugely beneficial. I think I'd probably enjoy any podcast. I quite like chatting to people, so it'll be good, but having one where I just find out so much stuff has been hugely beneficial.   Alex Twersky (30:18): So maybe this kind of precludes the next question, but I might have to pressure you into coming up with a second answer, because it sounds like one of your favorite things about hosting the podcast is how much you get to learn and the diversity of people that you get to meet and eventually perhaps become even better acquainted with. But apart from that, what would be your next favorite thing about hosting the Living Well with MS Podcast? I mean, obviously except for working with me, of course.   Geoff Allix (30:51): Yeah. I think it's such a diverse and interesting group of people. We have one thing in common, which is that we have MS, but then there's a commonality in the people that are going to be on the podcast. And they're all people who have decided that they want to do something proactive. So the people with MS are all people who are not necessarily 100% following OMS, but they all have that proactive mindset. They want to do something. They want to do Tai Chi and do exercise, or they're interested in nutrition. They certainly, they all have an interest. So I like that positive mindset of actually taking control of your own destiny and doing something. So I just think it's been a fantastic group of people that I've come across.   You mentioned Sam Josephs, because she's been on the podcast as a nutritionist, and also just random things because actually I went to university with her, which is by sheer chance. And I don't think-   Alex Twersky (30:51): Oh, really?   Geoff Allix (31:59): I'm not aware that I met her at university, but we have huge numbers of mutual friends, which is somewhat extraordinary because we were a university of 10,000 people and we just happened to have almost the same group of friends. We must have met each other, but neither of us could remember it. But that actually led to the retreat I went on. The CEO of OMS at the time, Gary McMahon, ended up showing my university picture, my university badge at the time, where I had shoulder length hair, and everyone found it hilarious.   Alex Twersky (32:36): You were a [inaudible 00:32:38] hippie.   Geoff Allix (32:38): Well, yeah. And now I don't have any hair.   Alex Twersky (32:43): You've come full circle, Geoff. Maybe one day you'll return back to your-   Geoff Allix (32:47): It's unlikely.     Alex Twersky (32:50): But tell me, Geoff, when you started hosting the podcast three and a half years ago or more, did you think when you started that you'd still be going strong four seasons on and nearly 100 episodes under your belt?   Geoff Allix (33:06): No, not at all. There had been a previous incarnation of the podcast, which was very few episodes I believe. And so I was expecting it to be maybe for a year. Yeah, I didn't think it would be any longer than that. I mean, I just didn't know, would anyone listen to it? And I still joke now when I meet someone who's a listener and I say, "Oh, you're our listener," but I know that we have thousands of people who listen.   And so yeah, which I find extraordinary as well. I just think it's great that we're doing something that's caused a loyal fan base. So yeah, it's been fantastic. I mean, and yeah, it's just going from strength to strength. I mean, we started with one series and now we've ended up with three series. So yeah, we're clearly doing something right.   Alex Twersky (34:00): I couldn't agree with you more. And I myself am always heartened when random people reach out and say how much they appreciate the podcast, because I mean, I'm sure you feel the same way. I know that I've really been very fortunate to have been involved in this project because it really is such a great platform to bind our community closer together and share knowledge and new experiences and inspiration from all corners of the world. So again, thanks to you, Geoff, for being such a stalwart and exemplary representative of the OMS ethos and for being such a great host for all these years.   So I wanted to, on the subject of the podcast, and I promise, just a couple more questions about the podcast and then move on to another topic. But I know that I should be the last person to ask you if you have any favorite episodes, because I'm sure you love them all equally, like you do your kids, but are there any that just off top of your head that stand out for you personally, or kind of hit you close to home?   Geoff Allix (35:14): So there's one, I actually mentioned it recently at the Delamore Arts event. I interviewed George Jelinek for the first episode. And then later on, his wife, Sandra Neate, who took over from him his role in the neruoepidemiology unit in Melbourne. During George's episode, he's got a couple of dogs and they went ballistic when someone came to the door. I think there was some post that arrived. And it's fine. I mean, I have editing software and cut the episode and restarted it. And it was all fine. You didn't come across it in the actual final version.   But then I saw the dogs again. We normally have video turned on when I'm actually recording, although it's just for the sound. But I saw the dogs again because I was interviewing Sandra Neate. And the dogs were sitting, she was actually in a bedroom and the dogs were sitting on the bed behind her. And I was like, "Oh, are they the same dogs?" She said, "Yeah, yeah, yeah." I said, "Yeah, they were a little bit of a problem last time, because there was a noise and they just went ballistic and made huge amounts of noise." And she said, "Oh, don't worry. It's absolutely fine." So during the episode, there were a few background noises. The dogs were the best-behaved dogs you have ever seen. And so it was very interesting because it revealed to me that George Jelinek is one of the people I respect most for huge numbers of different things. But actually, I think the dogs might respect his wife a little bit more.   Alex Twersky (36:52): I think we now know we've revealed a great hidden secret.   Geoff Allix (36:57): Who the boss of the Jelinek household is.   Alex Twersky (37:01): The boss of the dogs in the Jelinek household is Sandra Neate. So we'll share that as a bonus with our listeners, considering that it's our 10th anniversary year, but keep it to yourselves. So Geoff, a final podcast question is, and I'm particularly curious about this one, is how would you like to see the podcast evolve in its fifth season or beyond?   Geoff Allix (37:23): Well, that's a difficult one. I think it's just getting that variety of people. I think maybe we reach out a little bit more now to people who are not necessarily directly connected with OMS because there's also, there's exercise people. There are people, and you realize actually there's so many people who've got a very similar mindset. So it might be someone, like sort of people who, you know, the MS Gym, again, very much follow a healthy lifestyle, do exercise. Mat Embry, he's got his own thing. He has a slightly different diet, but there's so many similarities. It's sort of do the exercise. He's very much against disease modifying therapies, but his diet, there's a lot of overlaps. Don't have dairy, keep saturated fat low, avoid processed foods. So there's all these sort of things. It's quite interesting to explore those areas and where there's overlap between different organizations. And reaching out to other organizations as well, like the larger MS charities, would be quite interesting.   Alex Twersky (38:40): Apart from the podcast, Geoff, are there any other fixtures of your life, whether they're related to OMS or not, that would help our community get to know you a bit better?   Geoff Allix (38:51): Whoa. I think most of my friends would say, would probably highlight, I mentioned adventure sports, and that's probably a definite aspect of my life. So as a teenager, I was very seriously into rock climbing. I rock climbed with a guy who was a world champion at the time, a guy called Jerry Moffatt. Another guy who was very famous in the UK, Ron [inaudible 00:39:22], I went climbing with. So I climbed a very high level, and then just, I love the outdoors. I love mountains. I love climbing mountains. I love snowboarding. I love scuba diving.   And some things I can't do anymore. I mean, certainly balance and things like that are an issue. I wouldn't like to rock climb now, I don't think, not the sort of climb I used to do anyway. But certainly scuba diving. I still go scuba diving. I just love the outdoors, the natural world. And I, because of that, mostly because of that, I moved from London and I come from near London or from southeast UK and lived in London for a long time. And I moved to Devon, which is a very rural area, very close to the area. So I just, yeah, have a huge love for the great outdoors.   Alex Twersky (40:27): Well, you certainly live in an area where you can take maximum advantage of it, so that's great.   Geoff Allix (40:33): And now everyone knows me because I tear around on a three wheeled off-road trike, which has huge big fat tires. And I'm known for riding up and down the beach.   Alex Twersky (40:45): I think they call you the scourge of Devon now.   Geoff Allix (40:49): Probably. And actually, what I'm doing next week is I'm going to Glastonbury Festival, the Glastonbury Music Festival.   Alex Twersky (41:00): Oh, so you'll be covered in mud.   Geoff Allix (41:01): Well, yeah. I'm being optimistic. It might be dry. I have been there quite a number of times. I think this might be, it's about the 12th or 13th time. And I have been on that a few times when it's been very, very muddy, but equally, a lot of times it's not at all and it's absolutely glorious. But I shall be, if anyone sees someone going around on an off-road trike, then that's me.   Alex Twersky (41:21): And for our listeners outside the UK, I believe Glastonbury is a very well-known annual music festival.   Geoff Allix (41:28): I think it is the largest performing arts festival in the world, I believe. It is huge. It's the biggest population in the southwest of the UK when it's on.   Alex Twersky (41:40): Wow. Well, I hope you have a great time and keep safe on the track. And Geoff, with that, I wanted to really offer you my profound thanks for being on this edition of Living Well with MS Coffee Break and allowing our community to get to know its very own podcast host a little bit better.   And as you very well know, there's one last question before you go. And it's a tradition that we ask all of our Coffee Break guests, including our Coffee Break host when he is a guest. So if you tap into your experience with MS generally, and also OMS specifically, for that one nugget of wisdom that you think would help people ease into and better adopt the OMS program, what would your advice for that be?   Geoff Allix (42:29): So well, there's two things I want to say. One is not so much easing into it, but it's just the advice of someone newly diagnosed. And it took us a lot of thinking about the name of this podcast, that ended up being Living Well with MS. And I think it's that you can have a really good life with MS. And I think at first, it can seem like it's the end of everything, but actually, it's not. Your life will change, but that's not to say it can't be fantastic. And I think that applies to everyone, that applies to people I've met and interviewed who are running marathons and equally people I've met and interviewed who are in a wheelchair. All of them can have a very fulfilling, optimistic, healthy life. I mean, MS doesn't mean you can't have good health.   I keep being told by my doctors that all my metrics are all brilliant. They just say, "Oh, you should be much younger because your heart's in great condition. Your blood pressure is fantastic. Your pulse is brilliant." And they do seem to ignore the fact that I'm there because I've got MS. But they said, "Well, apart from that, you're in really, really, really good health." So I think sort of following a good, healthy lifestyle like OMS is actually, and it's something my neurologist said, he said, "It's good for pretty much everything. Good for heart disease, lowers your risk of cancer, diabetes." Endless, it was a huge, long list of things. All the Western illnesses, you are lowering your risk by having a healthy diet and reducing your levels of stress. So it's beneficial for everything.   In terms of adopting the OMS lifestyle, I think the most daunting thing is the food, to start off with. And I think the thing to do is not think about it. It's not a diet, it is a lifestyle. So it isn't just food. I mean, there's multiple steps, seven different things, the protocol, and they're all very, very important. But in terms of diet, I think it depends on your mindset. I went all in. I just got rid of everything I shouldn't have straight away. Other people don't. And I would say it's really down to what you are like. Go with whatever's easiest for you. And equally I've met a number of people who said, "At first I cut out dairy. Then after that, got used to that, and then I decided to cut out red meat. And then after that," and they just moved step by step, got used to each stage, moved on, and then ended up at the level that they're happy with.   And I think you can do it in different ways. I think there's so much advice now about diet, but what I would say is try not to be an unhealthy vegan because it's very easy to fall into the trap of thinking you are compliant because there's a huge amount of heavily processed vegan food now available. And yes, it will take more effort to cook everything fresh, but it tastes fantastic. That's the first thing. Freshly cooked food tastes really good. And the second thing, it's so much healthier. So it's a whole food, plant-based diet plus seafood.   So think of that whole food aspect. Don't just think I'm okay because I'm eating stuff from the vegan aisle in the supermarket. Some of that is not all that healthy. Even if it's low saturated fat, it's still heavily, heavily processed food. And the other thing, yes, it's a lot more work to cook. Use your freezer. I think get another freezer, get a bigger freezer. A lot of people who do very well, I think, they don't cook one meal, they cook three meals, and then nothing wrong with microwaving food. And so they're eating actually very healthy food and cooking it less often but spending more time cooking. It really, I mean, it's the way that our grandparents used to do things. It's not rocket science. Just our generation has got so used to convenience. And I think we need to sometimes take a step back and do things a bit the old-fashioned way.   Alex Twersky (47:09): Excellent advice, Geoff. And even though you've labeled it old fashioned, I'm sure that it's as applicable in the 21st century as it was in the 20th. And thank you so much for sharing those perspectives and everything else you did on this episode. And also sharing of yourself in so many ways, as the host of our podcast and also as an ambassador and as just such a wonderful and instructive and cheerful member of our community. I really appreciate it.   So with that, I'd like to thank everybody for tuning into this episode of Living Well with MS Coffee Break. Please tune in again for our future episodes, especially as we hit that 100 mark and beyond. And don't forget to check out this episode's show notes, where you'll get more links that refer to some of the content that we covered in this episode. So thanks again, and thanks for being part of our podcast community.   Geoff Allix (48:13): Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode.   Living Well with MS Coffee Break is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in, and see you next time.   The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.  

Laughter is the best medicine with Shari Short | S4E16

Bio:   Shari Short is a patient advocate, a professional in healthcare communications and naturally, a standup comedian. As Senior Director of Insights and Strategy at Bionical Solutions, she has over 20 years of experience in patient education from behavior change to clinical trial recruitment. A developmental psychologist by training, Shari has held positions with the National Cancer Institute, Centers for Disease Control, Virginia Department of Health, Fox Chase Cancer Center, and various healthcare marketing firms. Shari received her M.A. in developmental psychology from Columbia University Teachers College.    Shari has been living with Multiple Sclerosis for 14 years. As a Patient Advocate, Shari has shared insights from living with Multiple Sclerosis to the New Jersey statewide advocacy committee of the National MS Society as well as written for their national magazine, Momentum. She incorporated her experience with MS into a sold-out one-woman show called “It’s My Mother’s MS, I just Have It” and a satire letter series from “The Crazy Cane Lady”. Shari has been featured on multiple podcasts. She has been performing standup comedy since her teen years (read: the 80s) and has opened for performers such as Shawn Colvin and Sandra Bernhard.   Questions:   Welcome to the program, Shari, and thanks so much for joining us on Living Well with MS. You have a very eclectic background, from standup comedy to developmental psychology. Can you tell us a bit about how that all ties together and has helped you forge your current path focused on behavior change? We know humor is important to you, an essential part of your personal and even professional identity. And we’ll dig into that in a moment. But first, I’d like to understand your experience with MS. Can you give us a bit of an intro to that, anything you feel comfortable sharing? Was there a point when you developed a philosophy or even a methodology for using humor to cope with some of the challenges of MS? Can you tell our audience about that journey? You’ve produced a lot of humorous output about MS. Some notable things to mention (incidentally links to many of these can be found in the show notes, so I encourage everyone to have a look): a one woman show called “On My Nerves”; a satirical piece for Momentum, the National MS Society magazine; presentations at the University of Pennsylvania; various podcast appearances, including this one. Do any of these stand out for you, and if so, how? I understand that humor has personally helped you deal with scary situations, reframe your current physical abilities, and not take yourself too seriously. How transferable are these “benefits” to the broader MS community, and how would you advise people who don’t have the same organic relationship with humor that you do tap into them? How do you overcome the discomfort some people may feel when you apply a humorous or jokey spin to a “serious” topic such as MS? There’s a principle I understand you have called “laughing on purpose”. Can you tell us a little more about that? So I’m getting the sense that humor can be many things as applied to MS: a coping tool, a teaching tool, or even a defense mechanism. What’s your best advice for how Joe Q. Public with MS can harness humor to its maximum positive advantage? Thanks so much for being our guest on Living Well with MS, Shari. We are thrilled to learn about the amazing work you’re doing to help people with MS ease their burdens and get the most out of life using humor. And I encourage everyone to learn more about you and your work by checking out the links and more in our show notes for this episode. Thanks again, Shari.   Links:   Connect with Shari on LinkedIn Read Shari’s humorous piece in Momentum Magazine, the official magazine of the National MS Society Check out Shari’s satirical take on pharma marketing Here’s a collection of Shari’s videos connected to the 2021 Tody Awards Check out selections from Shari’s 2011 one-woman show, "It's My Mother's MS, I Just Have It" – clip 1 and clip 2   Coming up next:   Starting June 27, please join us for the 33rd installment of our Living Well with MS Coffee Break series. On this journey into the lives of our global OMS community, we have a special surprise for you – a mystery guest. Their location won’t be disclosed until the episode because you’d likely guess who it is it were. But we assure you that you’ll relish some of the behind-the-scenes details of this person’s life and OMS journey.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E53 Transcript Laughter is the Best Medicine   Geoff Allix (00:00): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode.   Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org or you can reach out to me directly on Twitter, @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let's meet our guest for this episode.   Welcome to the Living Well with MS podcast. This episode is Laughter is the Best Medicine, with guest, Shari Short. Shari is a patient advocate, a professional in healthcare communications, and naturally, a stand-up comedian. As senior director of insights and strategy at Bionical Solutions, she has over 20 years of experience in patient education, from behavior change to clinical trial recruitment. A developmental psychologist by training, Shari has held positions with the National Cancer Institute, Centers for Disease Control, Virginia Department of Health, Fox Chase Cancer Center, and various healthcare marketing firms. Shari received her MA in Developmental Psychology from Columbia University Teacher's College.   Shari has been living with multiple sclerosis for 14 years. As a patient advocate, Shari has shared insights from living with multiple sclerosis to the New Jersey Statewide Advocacy Committee of the National MS Society, as well as written for their national magazine, Momentum. She incorporated her experience with MS into a sold-out one-woman show called, It's My Mother's MS, I Just Have It, and a satire letter series from The Crazy Cane Lady. Shari has been featured on multiple podcasts. She had been performing stand-up comedy since her teen years and has opened for performers such as Shawn Colvin and Sandra Bernhard. Welcome to the program, Shari, and thanks so much for joining us on Living Well with MS.   Shari Short (02:34): Thank you for having me.   Geoff Allix (02:37): You have a very eclectic background, from stand-up comedy to developmental psychology. Can you tell us a bit about how that all ties together and has helped you forward your current path focused on behavior change?   Shari Short (02:51): Sure. I mean, doesn't it sound like such a natural path, from stand-up comedy to developmental psychology. It's like a board game, really, it's like a party game. I basically started out really wanting to be in the arts and especially stand-up, I preferred stand-up to acting. I sing, I act, whatever, but stand-up was my favorite. And I for some reason had the guts to start it at 14 years of age when I had braces and was in high school and was able to go into the comedy clubs and just watch, watch and learn. And the older comics there just, they adopted me and took really good care of me. I read John Belushi's book, a book about John Belushi by Woodward, at a young age, and it scared me to have to depend on my sense of humor for finances.   So I said, "Well, I want to have like a solid degree and a solid job and do stand-up." And of course, when you're a teenager, you think that all works. I was eager to at least get academic credentials behind me, so I went to film school, went to NYU, and there I minored in psychology, spent a lot of time during the summers, working with young kids and parents in theater camps, and just absolutely fell in love with... Excuse me... The way that our lives changed when we become parents. And it wasn't me, I was watching people become parents, and I was helping parents and I wasn't even a parent yet. So when I chose developmental psychology for my graduate work, I felt like that's what I'm going to go into. I want to create resources for parents.   I became concerned with... like we talked about Microsoft earlier, I was like, "Are there books for parents on how to use the computer?" I interned with Sesame Street. I was very focused on being creative within this academic psych setting. But once you go to grad school, nothing's really funny, so I stopped doing comedy. I had opened for Sandra Bernhard, I'd opened for Shawn Colvin, I'd had a wonderful time, but you got to commit. If you want to do stand-up, you have to commit and you have to want it, you have to want that life and I preferred giving lectures.   I preferred making the audience laugh that they had to be there, I had to grade them or they had to be graded, they had to show up. And I tipped my hat off to everybody I know that's successful now, that just put in those hours and put in that amount of travel to live the life of a stand-up comic, especially in the 90s, and the early 2000s, because that was way before MS for me, but something I knew I didn't have the stamina for. And I was so nervous to not get paid and have it all depend on my sense of humor, that was a big thing for me.   Geoff Allix (06:14): We'll come back to the humor in a bit because it's obviously an essential part of your personal and professional identity. But first, because this is a Living Well with MS Podcast, we want to understand a bit about your experience with MS. Could you give us a bit of an intro, anything that you feel comfortable sharing about your MS journey?   Shari Short (06:35): Sure. I was diagnosed in the summer of 2008. I had become a runner a year or so before that, and was training pretty intensely for a 10k, and I suddenly had vision loss and pain behind my eye. It presented as the optic neuritis, but I didn't know that. For me it was, "Oh, there's pain, there's my eye, there's my head. Clearly it's a brain tumor." And I panicked and went to the urgent care center and they sent me to the ER, and I got an emergency eye doctor appointment the following morning. And the eye doctor just said, "Oh, this is really classic optic neuritis." And I was like, "Great, give me some eye drops." I didn't know what that meant, and he just kept sitting there and I'm like, "Oh, you have more to tell me, don't you?"   He got me into a pretty quick appointment with a neurologist. And I don't have a slow, drawn-out diagnosis story, like so many. They had a neuroradiologist at my MRI, they saw lesions, I was diagnosed really quickly, all based on that one event with the optic neuritis.   Geoff Allix (07:53): I think there is a difference in different health care systems around the world, it does seem to me the Americans I've spoken to, do get diagnosed typically quite quickly, whereas in the UK we often get diagnosed quite slowly. But on the flip side, we get lots of free medication.   Shari Short (08:10): Yes, it's quite the flip side.   Geoff Allix (08:13): Definitely tradeoffs between the different-   Shari Short (08:13): It's quite the flip side.   Geoff Allix (08:16): If someone were to come up with the best of both worlds, it'd be pretty good. But yeah. Yeah, I would never say anything bad about our system, our system is fantastic.   Shari Short (08:24): I'm a fan of your system.   Geoff Allix (08:25): But yeah, there are downsides to how quickly things happen occasionally, but anyway, we can live with that.   Shari Short (08:30): Yeah [inaudible 00:08:33].   Geoff Allix (08:33): Was there a point when you developed a philosophy or methodology even of using humor to cope with some of the challenges that came up because of MS?   Shari Short (08:45): It was pretty organic, I think, for me to be using my humor to cope. And I just didn't realize how naturally it would be until I was actually in a situation where I had to really tap into my coping skills. At my very first MRI where they diagnosed me, and the neuroradiologist is literally showing me my scan so I'm seeing my skull, the first thing out of my mouth, Geoff, was, "Do I look fat?" Right? It's like, "What?" Like, "Where'd that come from?" Like okay, I'm nervous and I'm processing, and clearly I'm going to try to lighten the mood. And to just see myself consistently doing that, when I got my first handicap tag and I was very sad about it, I remembered I had a dress the same color and I'm like, "I can finally accessorize."   So things were just coming to me in a way to get me off of the morbid train, to get me off of the "Okay, I could really [inaudible 00:09:53] because of this particular situation, but I'm going to find the humor in it." And the more I did that, the more my friends would say to me, "You've got a collection of stuff here. You've got stories, you've got strangers who've said ridiculous things to you, you've got just funny conversations, you've had funny interactions." People would see me, and I didn't mention this before, but eventually after the optic neuritis, eventually I lost feeling on my left side and now I walk with a cane and two leg braces. And I've had people just approach me, like I'm some sort of former athlete and then they'd be like, "Oh, was it soccer?" They just made up sports and they're strangers, I started telling people it was a Quidditch injury.   Geoff Allix (08:45): Well Quidditch is very dangerous. I mean, the altitude and...   Shari Short (10:48): Well, yeah, this is my little PSA. Yeah, so Quidditch causes MS, so yeah. I had a lot of time to not only see how I was using my humor to cope, but also to just see humor in situations. I was watching it unfold and gave myself the project of putting together a one woman show. And in doing so, in writing and in taking every Sunday to just sit and write and write, it was really, it was a deep dive into my own perspective. And from there I did the show, but I also then put together presentations and different types of creative outlets and tools for coping, that could hopefully help other people. Because this is not a mindset that just comes easily to a lot of people.   Geoff Allix (11:39): You've produced a lot of content, which you've touched on there, and it is mentioned in the show notes, so do have a look, there's links to a lot of that content. Some of the things are shows, like On My Nerves, as well as a satirical piece for Momentum, the National MS Society magazine in the States. Presentations at the University of Pennsylvania, various podcast appearances, including this one. Could you tell us if there's any of those experiences that stand out for you?   Shari Short (12:11): The one-woman show was phenomenal, and it was called On My Nerves, but the working title for me was, It's My Mother's MS, I Just Have It, because I had so many stories about how mom was dealing with my diagnosis or dealing with my disease, as opposed to me. And then that dovetailed into how everybody else was dealing with my situation, and the stories that I had on that. To have so many people come out and see that, and then be asked, "Do you want to do this for fringe festivals and stuff like that?" And to have to say, "Actually, no, I can't, that took all the energy I have." It was amazing, I'm glad I had it taped, I'm glad I have my binder. I could do it again, but I couldn't do it on a show basis.   To have a night at the theater where 140 people came out and it was sold out, was a really wonderful way to honor how I've used the humor. And also I got just emails and responses from people with other chronic illnesses, and a lot of people with more silent, hidden chronic illness that were like, "Thank you for that, because you just touched on stuff that no one's talking about, and you did it in a way that was safe." And I just realized that the humor can help people and it's not just helping me. Yeah, and then just the Crazy Cane Lady letter series that I started a couple of years ago was just a little creative advocacy project for me, where I would just write letters, fake letters, very real feelings, but fake letters to different entities, like hotels or restaurants, or back to school night, or Broadway theaters, about how they could be more accommodating to people like me.   I definitely honed in on the cane part of my existence because I see that there are tremendous accommodations, and we could still improve for people in wheelchairs, but the cane, it gets a little middle child treatment sometimes. And there's a ramp that it'll take me a year to get up the ramp on the cane when I could just go up the steps and then be there. So I just feel like there's a lot to learn and people have a lot to learn in terms of event planning and in terms of accommodating people with canes. I did this series of letters during MS Week here in the States, it was in March a couple of years ago. And I made those public, and that took off really nicely. People responded really well to that, and I need to write more of them. I was going to do it again the following year, but the following year was COVID and I just felt like we all had bigger fish to fry than if I can find a bench near a movie theater, right? So I didn't continue with that. I did a video series, like an Oscars version of just thanking different entities within the MS community that have helped me cope. I feel like if I can't perform it or if I can't write it and put it out there in a satirical way, I'm not processing. I don't do the serious stuff and process; it has to be creative for me to feel like it's healing.   Geoff Allix (15:37): You've mentioned that humor's helped you deal with situations you've had and help with your physical abilities and not take yourself too seriously, so how transferable are those benefits to the broader MS community? And how would you advise people to try to tap into that relationship you have with humor?   Shari Short (16:03): Yeah, no, that's a great question. I think that it comes down to the lens that you're seeing life through and the lens that you're seeing your mobility issues through, or whatever it is that MS has affected for you. And the lens I used to see my slow gait and my balance issues, I used to just... Well, I went from being a runner to the negative and it was, "Oh, great. This is what I get, and this isn't fair." And all of those very, very normal feelings, to, "All right, I'm going to rock a cane." Or "All right, with these assistant orthotic devices, they make me look like a Jedi." Or not, they made me look like a storm trooper actually, because they were white.   I also, I have to say I had a small child during this time, so I really felt the need to be creative about what was happening to mommy, because he saw me go from a runner to, I can't walk well, and that kind of pushed me along. There might be something for other people, when they consider, "Well, am I looking through it in the glass half full lens, or am I looking through it in the glass half empty? And what lens am I looking at it through? And are there things that I think are funny that, if I tell people I think they're funny, they're going to judge me?" And I'm here to say, embrace all of it. It's your lens, you're seeing it through. I did a lot of acceptance of dark humor. I did a lot of acceptance of the fact that humor is a language and some people will be put off if you're joking about your condition. And some people will feel like, "Oh, okay, good [inaudible 00:17:53]."   Geoff Allix (17:53): How do you deal with that discomfort if people are not comfortable with you talking in a humorous way about something as serious as MS?   Shari Short (18:03): Sure. Well, it's always know your audience, right? If I'm talking to other people who have MS, to the best of my ability I gauge where they are, like that talk I gave at Penn here in the States, they knew they were logging on to see a comedian, they knew what they were getting, so I wasn't too scared to read the Crazy Cane Lady letters or whatever. But I mean, to this day... look, last week I dealt with COVID and I knew I had COVID not because of a cold or a cough, but because I collapsed, and my husband had to pick me up off the floor. It triggered something in the MS and I'm like, "Oh, I've got a virus that my body wants me to know about."   And I could tell people and I get the "Oh." You know, I get the face. And I'm like, "Yeah, but I didn't hurt myself." Or "Yeah, my husband was right there." Or "My COVID's more fun than your COVID." I feel the need to keep going with the story instead of letting it halt and let them know I'm okay. And not everybody can do that, and I get that. And that's why, when I do workshops or anything like that, I get personal and talk about, "Okay, what's in your toolbox? What can you grab onto at that moment that is going to help you get either through telling the story or through what you're doing?" Almost in a cognitive behavioral way, "What's a great image you have in your head to just move you through the situation?"   And that's all just been because that's worked for me, and I know from research that humor is healing and laughing is really good for the body. There have definitely been situations in my life where the instinct is to cry, but I know it I've always felt better if I set the situation up so I could laugh at it.   Geoff Allix (20:10): You've got a principle, I believe, called laughing on purpose, which you've almost touched on there, I think. But could you tell us a bit of more about that?   Shari Short (20:18): Laughing on purpose?   Geoff Allix (20:19): Yes.   Shari Short (20:22): Laughing on purpose, I mean, when I hear that phrase, I mean, I feel like it's making a conscious choice to keep your sense of humor about you when things are challenging. And that looking at things with humor is not a weakness, it's like, if I don't laugh, I'll cry, that phrase that's out there. It's like if you laugh, it's actually going to help the situation a little bit. And it's for you, it's personal for you. It's not like, "Oh, somebody else is suffering, so laugh at them." I'm only talking about when one is dealing with one's own stuff. That would be horrible advice to give to anybody to just laugh at other people's challenges.   Geoff Allix (21:04): I just think all the best humor is when it's the comedian laughing at themselves, I think that's the funniest humor, isn't it?   Shari Short (21:10): Of course. Yeah, and I felt like sometimes I had to be jostled into it, I had to be jostled back. And I had this wonderful story in the show whereby I got that handicap tag and I was sad about it. And my boss at the time was like, "Well, can I borrow it? I have Springsteen tickets, and I would love to use your handicap tag." Here I was feeling really bad for myself, and then people were like, "You've got the golden ticket." I have this motto or whatever, or this creed or this way of looking at things, like if I don't try to find the humor in this, then I haven't really processed it, like I mentioned before. And it's not a pressure, it's just how can I help myself?   Occasionally they'll be like, "Oh no, no, no, it's not working yet. It's not working yet." And in my toolbox, I have things that make me laugh. I have old Blackadder episodes, I have the best of Bits of Fry and Laurie, I have comedians like David Mitchell and things on the BBC that make me laugh, or American comedians like Kathleen Madigan. And I just go there, I'm like, "They're going to make me laugh and it's going to reset me." The things that are dark, the things that I've had to deal with with MS, the intimate, discreet ways in which the central nervous system wreaks havoc, MS wreaks havoc on it, I don't want to share with everybody, but I've become a little bit more like, "I've got to advocate for me or no one else will."   So if we're all going into a restaurant, I'm like, "Excuse me, but the seat near the bathroom. Yeah, that would be me. That is mine." Right? Yeah. And it's just like, I'm 51 years old, people might think, "Oh, oh, women do that." No, no, no, it is totally because of the MS. But I've just grown a little bit more comfortable with the uncomfortable because I communicate with my humor. And when you have MS, I mean, everybody's got it differently, but there's uncomfortable things about it.   Geoff Allix (23:33): Sense of humor can apply to many things in MS. It can be coping tool, teaching tool, defense mechanism, so just for general member of the public who's got MS, how can they harness humor to make a positive benefit to themselves?   Shari Short (23:55): I think, first of all, you have to ask how you're processing any aspect of where you are in your patient journey, is the term that's used most often. How are you processing? Are you talking about it a lot? Are you thinking about it a lot? Are you down on yourself because of it? Or are you trying to give yourself pep talks? Are you worried about the future? Where are you with it? And then ask yourself in that processing, "Okay, what kind of lens should I look at this through so it's going to help me move forward?"   The toolbox is something I come back to a lot. What makes you laugh, as you, your own person with MS, what makes you laugh is not what makes me laugh, is not what makes everybody else laugh, it's you. So write it down, actually acknowledge your sense of humor. What makes you laugh? And start to collect those things, whether it's books or whether it's links on the internet, whether it's the cat video or the guy who says, "I'm not a cat," to the lawyer, you know those things that went viral last year. There are things that can immediately make you laugh so just be more aware of them because they're tools for you to reset. And I use humor to communicate, not everybody does. You may find in your dealing with MS, that you've got two friends that will get your dark humor, that will get your jokes, or will support you on that, then they're part of your toolbox too.   I've found that I've had, like we talked about earlier, there's people that get uncomfortable or they make faces and I don't stop too long in their party. I just go, "Okay, yeah, yeah, no, I know it sucks." I can't take care of anybody else but me, so I think that's really important, is to just look where you are, what lens are you looking at it through? Where can you find, is there humor in this situation? Do you want to write about it? Do you want to tell a good close friend about it? Do you want to tell your doctor about it? But collect those things, because at other times it's going to make you laugh when no one else knows what you're thinking, and it's going to be part of your own collection of stories that you can go back to and say, "This is how I dealt. This is how I helped myself." Because to find humor in situations, it's not self-defeating, it's empowering.   Geoff Allix (26:26): With that, I'd like to thank you so much for being our guest on Living Well with MS. We're thrilled to learn about the amazing work you've been doing to help people with MS, to ease their burdens and get the most out of life using humor. And I would absolutely encourage everyone to learn more about you and your work by checking out the links in the show notes, they're available on every platform. Have a look at the show notes of the episode. And thank you much for joining us again, Shari.   Shari Short (26:52): Thank you so much for having me, this was great.   Geoff Allix (27:01): Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.   Living well with MS is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

Coffee Break with community member Regina Beach | S4E15

Welcome to Living Well with MS Coffee Break #32, where we are pleased to welcome Regina Beach as our guest!   Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.   As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. Regina is a very special guest for many reasons, including being an American living in the UK, and being an OMSer who works for the charity as its Trusts and Community Fundraising Manager. We hope you enjoy this episode’s conversation with Regina, coming to you straight from the UK.   Regina’s Bio:   Regina Beach is an American living in the Welsh Valleys with her British husband. She was diagnosed with RRMS in April 2021 and adopted the Overcoming MS program shortly thereafter. She is a yoga teacher and writer who regularly leads workshops and publishes poetry and essays.  She enjoys cooking and is writing an oil-free vegan cookbook with her husband. She also works part time as the Trusts and Community Fundraising Manager for Overcoming MS. Prior to diagnosis she was an avid long-distance cycler. Her goal is to feel strong enough and balanced enough to get back in the saddle.     Questions:   Regina, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? I understand that you’re rated as having significant disability on the EDSS scale. Has the OMS Program helped alleviate this, or had no effect? What are your thoughts on people with MS choosing other types of diets or lifestyle protocols that are not OMS? Let’s shift gears a little bit and talk about your professional life. You used to be a schoolteacher in the US, but now you live in the UK with your British husband, and you actually work part-time for OMS as its Trusts and Community Fundraising Manager. How did that transition come about? OMS is celebrating its 10th birthday this year, and there are some special events in the wings. I understand you’re involved in some of these, such as OMS Birthday Trivia in June, and the Big Picnic in July. Can you tell us a little about what to expect? Since you work in fundraising, what advice would you give to people in our community who want to get involved in this domain to help the charity? My next question straddles the personal and professional realm: you’re a devout yoga and meditation practitioner, and you also teach it. Can you tell us how that’s helped you, and share some tips on how others can get into the groove of a daily mindfulness practice? Regina, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?   Three Interesting Facts About Regina (in her own words):   I’m a yoga teacher and have changed my practice to be gentler and exploratory. I used to teach hot 26+2 (Bikram style).  I used to be a public-school teacher in Chicago where I taught secondary art and design. I have significant disability, with my neurologist most recently rating my EDSS at 6.5. I have incomplete remission, so my symptoms are always with me.     Regina’s Links:   Check out Regina on Instagram, all about her adventures with whole food plant-based eating. Read Regina’s newsletter, all about creativity through movement, art, and whole food plant-based cooking. Have a peek at Regina’s website.   Coming up on our next episode:   On the next episode of Living Well with MS, premiering June 15, 2022, meet Shari Short – MS patient advocate, professional in healthcare communications, and naturally, a standup comedian – and learn from her experience with MS how laughter can be a powerful medicine in itself.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E52b Transcript Coffee Break #32 with Regina Beach   Geoff Allix (00:00): Welcome to Living Well With MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading Multiple Sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix.   Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys, and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.   You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform, so you never miss an episode. So, get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.   Welcome to Living Well with MS Coffee Break #32, where we are pleased to welcome Regina Beach as our guest. Regina is an American living in the Welsh Valleys with her British husband. She was diagnosed with Relapse-Remitting MS in April 2021 and adopted the Overcoming MS program shortly thereafter. She's a yoga teacher and writer who regularly leads workshops and publishes poetry and essays. She enjoys cooking and is writing an oil-free vegan cookbook with her husband. She also works part-time as the Trusts and Community Fundraising Manager for Overcoming MS. Prior to diagnosis, she was an avid long-distance cycler. Her goal is to feel strong enough and balanced enough to get back in the saddle.   Regina, welcome to Living Well with MS Coffee Break. We're very glad to have you on our program. So the purpose of this series is to get a better understanding of the members of our community from around the world, and today you are in the hot seat. So, could you tell us a bit about your day-to-day life?   Regina Beach (02:12): Sure. Thanks, Geoff, for having me. I am American, but I do live in the UK. So, my day-to-day life takes place in South Wales where I am a writer, a yoga teacher, and I also work part-time for Overcoming MS as the Trusts and Community Fundraising Manager, which means I help people who want to do a charity bike ride, or a race, or if they want to sell something, or raise funds for OMS. I help in whatever way, sending out swag, helping promote and advertise, and working with some really cool OMSers doing amazing things.   In terms of my day-to-day, I was diagnosed with Relapsing-Remitting MS in April of 2021, so not that long ago, and so I am still in the middle of figuring out what works best for me and how to fully embrace the OMS lifestyle. I jumped in right away about a month after diagnosis, I found the website, devoured it, and soon after got the book, read it, joined the Facebook group. I really feel like this is the pathway back to health, or to living as well as I possibly can, for me.   Geoff Allix (03:40): So how was it being diagnosed mid-COVID pandemic? I'm guessing that's made a difference.   Regina Beach (03:50): Yeah, absolutely, because I really put off getting the tingles in my feet checked out for a long time. I wasn't really in pain; I wasn't really having mobility issues. I was just having lots of numbness in my feet. And since I had been extra active in 2019, I did miles of swimming, biking, and running, I thought I was just experiencing some overuse residual something. And I really put it off and put it off, and it wasn't until my acupuncturist was like, "Your cold tingly feet, really, I haven't been able to do anything about this. I really think you should go to your GP and get some blood work done." And I'm really glad that she said that because I think, especially for people who like to tough it out or who are used to doing physical things and maybe having their body have adjust to stuff, I really wasn't thinking that I had something neurologically wrong with me.   And so then, obviously it took a little bit of time to check, I didn't have low B12, I didn't have low iron. My GP thought maybe I had a pinched nerve and just ordered a cervical MRI, and then eventually a full MRI. And then I ended up in the hospital for a week because I was having, I guess, a big relapse where I really had some terrible symptoms, and was losing mobility, and ended up with the diagnosis about a year after I really first started having those tingles. So, I do feel like I'm getting good care now, but I feel like the road to finding that diagnosis and really finding my way was definitely prolonged because of the pandemic.   Geoff Allix (05:38): And I think MS is a difficult one anyway, because it's not like we have a key symptom. Most things you can say, "Yeah, that's likely to be that because you've got this key symptom." We're like, "Well, actually it could be anything." Your nerves do everything in your body, and we've got a problem with our nerves, so it could be, people have got eye problems, walking problems, bladder problems, temperature problems, pins and needles problems, and they're all MS. So yeah, it is really difficult.   Regina Beach (06:07): Yeah, exactly, and you don't necessarily think of, "Oh, I need to pee all the time," as being connected to this idea that the grip in my left hand is not as strong as it used to be. You don't make that connection naturally, I think, because MS symptoms can run the gamut.   Geoff Allix (06:25): So, when did you come across OMS? How did you find out about OMS? And how did that go for you?   Regina Beach (06:33): My whole life, I have said, "If I ever get really sick," kind of jokingly, "I'm just going to become a monk and be a vegan and live in the woods." And so obviously, one of the first things I Googled was, what's the best diet for MS, because I understand that what we put into our body is the molecules that we become. And so I thought, okay, someone has got to have been doing research on this, and so I came across Swank, and then came across Jelinek, and then the evidence was just so compelling to me. I spent a month researching recipes, getting rid of stuff in the fridge, overhauling things.   My husband's been really wonderful and has changed his diet too, so we cook together. We're writing down our recipes and compiling a cookbook. We have an Instagram where we post recipes. It's been really fun, and it's been a huge change because I used to really love cheese and dairy, and my husband used to be big into smoking meats and grilling meats, and so we've just done a 180 with our meals, and it's really helpful to have somebody to co-plan with and cook with.   Like last night, we had some smoked fish and veg, and it's actually really amazing what you can do, cooking without oil, that I had no idea was possible. So I'm actually really happy that we found this. He's a triathlete and has found a lot of benefits from the diet portion of Overcoming MS as well, and I've always been a meditator of sorts, but now I feel like it's really key, and I definitely carve out the time more than I used to for that component.   And yeah, I do take a DMT, and I'm hopeful that with everything together, I'll get some more mobility back because I walk currently with two sticks, and I'm really hoping to one day be able to walk without a mobility aid.   Geoff Allix (08:42): Yeah. That was the next thing I was going to ask actually, so you are listed as having significant disability on the EDSS scale. So what's two sticks? That's somewhere up like four and a half, five, or something on the scale?   Regina Beach (08:55): Yeah, so I don't leave the house without at least one stick and it really just depends on how my balance is feeling that day. And sometimes, if we're at a museum or if I'm out and about in a big public arena, I've used a wheelchair before, just because walking long distances is really tough for me. And that was really heartbreaking because it was something that, hiking and long-distance trekking are things that have been a really important part of my life up to this point. I did the Camino de Santiago, and I've done a lot of long-distance cycle trips across Europe and Asia and North America, and I feel really lucky that I was able to do those things. But yeah, so being in this new body of mine that doesn't function the same way, and is really slow, and I have foot drop on the left side, and it's really a big adjustment, and I don't think I'm totally there. I dream of running sometimes, or I dream that I can walk.   Geoff Allix (10:08): Literally in your dreams?   Regina Beach (10:09): Literally in my dreams.   Geoff Allix (10:10): I have that as well. Some people say, "Does that make you sad because you've lost it?" And it's actually no, when you half wake up and you're just coming out of a dream, if I'm getting back to sleep, I'm just like, "I'd love to get back into that dream again," the one where I'm running around.   Regina Beach (10:25): Yes.   Geoff Allix (10:26): Because it's like memories of what used to be, and very similar stuff I used to do, like do a lot of mountain walking and hiking and cycling and stuff. The things now that I think would be an amazing achievement, whereas before it would be climbing Mont Blanc or something, now it's like, something less daunting. I mean, if I can do something like Snowden, or something that's not a hard mountain, that would be such an achievement for me. I mean, I don't know if it's achievable because I'm not really, I'm similar to you, I always take a stick when I go out, but I'm not ruling out that I can get a bit better.   Regina Beach (11:04): That's how I feel.   Geoff Allix (11:06): There are people I've come across, who like me, think those aids, they're not disabling, they're enabling. So, using mobility aids, and certainly, yeah, so I've got an E-Trike that I use partly also as a mobility scooter sometimes because I can just put it a walk mode and just trundle along. Because I just, yeah, the distance is the problem really, whereas I'd love to go on a city break where I just wander around all day. But now I-   Regina Beach (11:39): I love that, yes, where you're just walking miles and miles and seeing all the things, and now you have to be a little more deliberate about where you're going to go, how long is it going to take, and where can you take a rest? But it doesn't mean you can't do it. So I was really nervous to take my first international trip since having mobility issues, but my husband and I went to Egypt over Christmas and New Year's, and it was amazing how much we were able to do and how accommodating people are when you just explain the situation, and how much people want to help and make things as easy as possible. So, we did a snorkeling trip and everyone on the boat was super helpful because that is, as someone who has balance issues, it’s a nightmare to walk around on a boat.   Geoff Allix (12:27): Yeah. Well I've been scuba diving twice since I've had MS.   Regina Beach (12:27): Nice.   Geoff Allix (12:33): Yeah, I've been scuba diving in Costa Rica and in Thailand, because I used to scuba dive a lot, but actually I thought, well, why not? Because there's not a balance issue.   Regina Beach (12:33): Yeah. Once you're in the water, it's great.   Geoff Allix (12:44): Yeah. And actually when you're scuba diving, you don't really, really, it's not a lot of exertion, because otherwise you use up all your air basically. So you are trying to do everything in a very gentle motion, so I still have the skills, and yeah, the problem is getting on and off the boat. On the boat, because it's moving around, there's loads of stuff to hold onto because everyone's got to hold onto stuff, so actually it wasn't that bad. So yeah, I could do that, and that was really cool.   Regina Beach (13:11): Yeah, and it is just about finding what you can do and leaning into what you can do, and making new goals, like you said. There's a little lake, we live right near the Cwmcarn Forest Drive, and one of my goals is to make it around that whole little lake without taking a break. And that is a very small goal compared to maybe what I used to be doing, but that's fine, that's where I'm at right now, and I'd rather be getting out there and trying for that. And also I just really appreciate my good days because, obviously, I used to take walking and running for granted, and now I'm like, "Oh, I feel great today. I'm definitely going to go out for a walk or for a little hike." So there's the small joys.   Geoff Allix (13:58): Yeah. And the next question is, what are your thoughts on people with MS choosing other types of diets or lifestyle alternative to OMS?   Regina Beach (14:11): Yeah, so this is really interesting. Since being diagnosed and disclosing my diagnosis, I've had a lot of people say, "Oh I have MS too," or "I have another autoimmune condition," which I think is really interesting, how much you don't know about your acquaintances. I feel like disclosing brought me really close to some people who I had no idea also had things that they were dealing with. But I also think that it's a really personal decision about how you're going to self-manage your condition, and so I've definitely had to be firm, but kind, in my approach saying, "I'm sticking with OMS. This is what I want to do. If you want to do paleo, you want to do another diet, that's fine."   I think it really comes down to how you feel and what you can stick with. And so anybody who is managing through lifestyle, I think deserves big kudos. Anyone who's making these big changes in their lives, whether it's adding exercise or mindfulness, or taking supplements, or whatever it is. I think we're not really at odds with most of the other diets, they are mostly whole food based, they are mostly much healthier than the standard Western diet, and I think that you want to be encouraging, this idea that we have autonomy to make changes that aren't just dictated from a neurologist or a GP, that we can do something for ourselves.   Geoff Allix (15:46): Yeah, and I've spoken to people on different protocols, Mathew Embry, Best Bet Diet, talked to him, and the commonality is greater than the differences.   Regina Beach (16:00): Much more.   Geoff Allix (16:01): And with the Wahls protocol similarly, basically they're all non-dairy, they're all low saturated fat, they're all whole food based. Now it may be that you have organic grass fed, lean meat occasionally on the Best Bet Diet. It may be that you have, gluten is okay on OMS, which is not on others. So there's little bits on the edges, but the core bits are really the same, low saturated fat, whole food diet with no dairy, is basically common across all of them. And I think-   Regina Beach (16:39): Yeah, and even Swank had low fat meat after year one on his original diet, which the OMS diet is built on, so there is so much that is in that same vein.   Geoff Allix (16:53): Yeah. I think some people, as well, because there's a lot of stuff with fasting now as well, and I think there's a lot of interest in fasting. And the paleo diet, if you cut out all your carbs, then you put your body into a fasting state, but when you talk to the neurologist about this, when you are proposing this, they're saying, "Oh yeah, we're not actually encouraging you to just go on an Atkins diet because that would put you into a fasting state, but that's not actually healthy. What you want to be doing is going to fasting state by reducing the time window you eat, or not eating for a day, a week," these different ways of doing it, and then eating a healthy lifestyle. So there's sort of like-   Regina Beach (17:35): Yes, and not just putting yourself into ketosis for the sake of it by not consuming carbs, which are really in everything, and as long as you're eating whole grains, is very, very healthy. That's what so many cultures and indigenous people's whole diets are based on, potatoes, or rice, or other grains. And I think cutting them out is, like you're saying, it's not healthy for the long haul.   Geoff Allix (18:06): So, to change a little bit and talk about your professional life, you were a schoolteacher in the US, moved to the UK and live with your British husband, and now work part-time for OMS as the Trusts and Community Fundraising Manager, as you mentioned. So how did that transition come about?   Regina Beach (18:27): Oh my gosh, I feel that life in Chicago, when I was teaching in public schools there, is a lifetime ago. I was really burnt out, it's a really tough job. I really give a lot of praise to all of the schoolteachers out there, especially in these strange times. But I was really at a point in my career where I was turning into the type of teacher I didn't want to be and needed to pivot, and so I decided to take a year to do a Fulbright Fellowship in Laos in Southeast Asia, and that was my last full year of teaching. I taught teacher candidates there, and that's actually where I met my now husband, who was on a motorcycle adventure through Southeast Asia, and came back to visit me a couple times.   And so, through that process, I was really thinking, okay, what is it that I really like? What is it that I really want to do? I did yoga teacher training. I became a lot more interested in mindfulness and moving meditation, and pivoted back to my first love, which was writing. I studied journalism in university, and really decided, okay, I want to pursue writing. And so some of my work with Overcoming MS is grant writing, and blog writing, and press releases, and I also write essays and poetry in my own time. And so, I'm just trying to carve out a life that's more reflective of my values and what I really enjoy and what I want to spend my time doing. And I was kind of already in that mode when I was diagnosed, but since diagnosis, it's been even more acute that, the time I have, I want to spend it focusing on the things that I really enjoy, and the things where I feel like I can make a big difference.   Geoff Allix (20:31): So OMS is celebrating its 10th birthday this year, and you've got some special events upcoming, there's various OMS birthday trivia, OMS big picnics, and other events. So could you tell us a bit about the events upcoming?   Regina Beach (20:45): Yeah, so we're really excited to celebrate a decade of the charity promoting the OMS program for people worldwide. And so, yes, the big picnic is a great way to get family, friends, your OMS Circle, involved in some outdoor fun, a barbecue, maybe, bringing OMS compliant foods, teaching people about what the diet pillar is about and why, and possibly even doing some fundraising for the charity. And we are going to do a big birthday quiz on Zoom this year, so that will be really fun, having people answer questions both about the program and also just fun trivia stuff.   And so, this year is really important because 10 years ago, Linda Bloom decided that the OMS program needed a cheerleader. I feel the organization is a mouthpiece to help deliver the content and help people who have MS understand that there are thousands of us who are living better because we're self-managing through the program. So, yeah, if you would like to get involved, email fundraising@overcomingms.org. We're really excited to celebrate. We're celebrating the launch of the new brand, we're celebrating what we're moving towards in the future, and hopefully it will be another 10 years of growth and expansion, and yeah, great food and great fun.   Geoff Allix (22:28): So my next question straddles personal and professional, so you're a devout yoga and meditation practitioner, which you also teach, so could you tell us a bit about how that's helped you? How that yoga and meditation side of things has helped you, and share some tips to others about how they could get into a daily meditation practice?   Regina Beach (22:50): Yeah, for sure, so I used to teach a very yang, very physical style of yoga, the 26+2 Bikram series, which is done in a 40-degree Celsius hot room, which I can't do anymore because heat really exacerbates my symptoms, and a lot of the standing series involves so much balance that it is just out of reach for me right now. So I really have had to adjust my practice and my teaching from this really intense [inaudible 00:23:24] to a much gentler, more yin, more long hold, more floor-based yoga.   And so that was really tough for me at first, because obviously this is something I've been doing, I took my first yoga class when I was in university, I was 18 years old, it's been with me for a long time. I'm trying to see it as, I have all of these years of experience, but now I have a beginner's body where I can't necessarily do all of the things that I used to do, and I'm now reteaching myself.   And so, coming at it from that perspective, I feel has been really helpful because it's just being curious about, what can I do today? Being curious about, how does my body feel today? And leaning into that, and saying, "Okay, this is how I feel. This is what I can do. This is how much I can do." And just letting the rest go, and that's where the mindfulness and meditation come in because we cannot force ourselves to do something that we're not able to, and that doesn't necessarily have to lead to frustration. I think that piece is so crucial, when you are able to accept where you are at today, then everything just floats a little better and we're a little more at ease.   I think you can do meditation no matter what you're doing, whether you're doing yoga, whether you're just sitting mindfully, whether you're drinking tea mindfully, whether you're just taking a nice walk and observing the birds and the trees. I think all of that is just, what can I do? Where am I now? How am I feeling in my body? All of that is mindfulness.   And I'm just appreciating where I'm at, and what I can do, and moving towards little goals to improve my balance, to improve my flexibility, and not necessarily treating my old body as the goal, because I might not be able to do all of those yoga asanas in the future, and that's fine, that doesn't mean I can't deepen my practice. And for a while I was thinking, well, does this make me a terrible yoga teacher if I can't do all of these poses? And I've come to the realization that people don't actually care if their yoga teacher can do fancy arm balances, what they care about is if their yoga teacher can meet them where they're at, and help them find comfort and ease, and a little bit of stretch and relaxation in their own body. And so that's also been just a new version of my yoga practice and my yoga teaching.   Geoff Allix (26:03): Yeah. I mean, Usain Bolt's coach is not a world record runner, so you can teach without being at that level, can't you?   Regina Beach (26:13): Exactly.   Geoff Allix (26:14): So, thank you so much for joining us on the Living Well with MS Coffee Break, and allowing the community to get to know you a bit better. So there's one last question that we have that we tend to always ask people, which is, if you could tap into your experience with MS generally, and OMS specifically, for a nugget of wisdom to help people, particularly if they're new to the OMS program, what would that be?   Regina Beach (26:39): I think, really planning out who you'll tell, and how, and what you need from those people you tell is really important because, for as strong as we all are, you need a community behind you. So whether you're going to lean on your OMS Circle, or your family, or your friends, I think having a plan and knowing how you're going to react when someone doubts that what you're doing is helpful. Because I think as a newly diagnosed person, it can be really crushing to hear someone say, "Oh, there's no proof for that," or "Why are you doing that? That's pseudoscience," or whatever the negative, we always remember the negative more than the positive. And so building a community of trusted people, of people who are supporting what you're doing, and having ways to deflect any naysayers, would just go a long way because the mental health aspect of having MS is no joke and it takes a village to keep people moving forward and living well, and taking care of all of these different components of the lifestyle.   But we can do it, and we can do it together, and I think things like the podcast, and the OMS Circles, and all of the wonderful OMSers really do support one another. I think that's the best part of this program, is the community.   Geoff Allix (28:03): Thank you. And thank you very much for joining us, Regina Beach, and thank you for all your work that you do with OMS as well.   Regina Beach (28:11): Thanks, Geoff, it was great to talk to you today.   Geoff Allix (28:13): Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there.   Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.   To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-Newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   The Living Well with MS family of podcasts is for private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.  

Walking on Pins and Needles - Managing chronic pain with Tai Chi with Arlene Faulk | S4E14

Bio:   Arlene Faulk has had a passion for writing from a young age beginning in the 8th grade when she wrote and published her class newsletter, The Tattler. She earned a BA in Journalism from the University of Iowa, reporting on everything from Led Zeppelin concerts to protests of the Vietnam War. She went on to receive an MA in Speech Communication from the University of Kansas.   At 22 years old, Arlene lost all feeling below her waist. She regained mobility, but it was years before she received an accurate diagnosis of MS. Arlene endured years of undiagnosed chronic pain, concealing her debilitating symptoms while climbing the corporate ladder, where she managed human resource departments in a major airline until her body stopped her.   In her illuminating journey of determination and self-discovery, she explores how practicing Tai Chi and modifying her lifestyle and mindset helped her retake control and move her life in the direction of possibility. She has been teaching Tai Chi for over 20 years in Chicago and Evanston, Illinois.   Questions:   Welcome to the program, Arlene, and thanks so much for joining us on Living Well with MS. Congratulations on the recent release of your book, ‘Walking on Pins and Needles’. It’s all about how you discovered how Tai Chi can help people, yourself included, manage chronic pain. We’ll get more into that shortly. But before we do, let’s dive a little bit into your background… You were diagnosed with MS in your early 20s, and that spiraled into a series of debilitating symptoms and pain. Can you tell us a little bit about those initial experiences coping with your new reality? Despite all of this, you still went on to build a successful career in the corporate world, until your condition forced you to stop. How did you deal with all of this while working in high pressure jobs? When did you discover Tai Chi? And perhaps for our listeners who aren’t familiar with it, can you describe what Tai Chi is in layman’s terms? How did the practice of Tai Chi help you deal with some of your chronic symptoms? Tai Chi seems to be yet another way to practice mindfulness, which is core to the OMS program. Can you speak about its impact on reducing stress in the body and mind? There’s something about our mindsets that compels us to try to control as much as we can, and at the same time letting go seems to be a healthier path. How do you use Tai Chi to make that lane change? When did you transition to teaching Tai Chi, and how did you develop your approach to using it as a tool for managing chronic pain? What sorts of people do you teach? Is your approach effective for a range of conditions, including MS? You’ve done on to write a book about this, and incidentally, more information about the book and where to purchase it is available in this episode’s show notes. How did the book come about? I know this is a bit of an unfair question, but I will ask it anyway… if you can distill your experience with Tai Chi into one core lesson learned that you’d like to impart to our global community of people with MS and their supporters, what would that be? Thanks so much for being our guest on Living Well with MS, Arlene. We are thrilled to learn about the amazing work you’re doing to help ease chronic pain through a Tai Chi practice. And I encourage everyone to learn more about it by checking out your book, and you can find all those links and more in our show notes for this episode. Thanks again, Arlene.   Links:   Learn more about and buy Arlene’s book, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis(River Grove Books, Feb 22, 2022) Dig deeper into Arlene’s story on her website Check out Arlene’s Tai Chi website and blog Connect with Arlene on Facebook, Instagram, YouTube, and LinkedIn   Coming up next:   Tune in starting June 6 for the 32nd installment of Living Well with MS Coffee Break, and get to know Regina Beach, an American member of the OMS community living in the UK who serves as Overcoming MS’s Trusts and Community Fundraising Manager.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E52 Transcript Walking on Pins and Needles - Managing Chronic Pain with Tai Chi   Geoff Allix (00:01): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast, or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org. Or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well With MS on your favorite podcast platform, so you never miss an episode.   And now, let's meet our guest for this episode. In today's Living Well with MS podcast, we have an interview with Arlene Faulk. Arlene Faulk had a passion for writing from a young age, beginning in the eighth grade, when she wrote and published her class newsletter, The Tattler. She earned a BA in Journalism from the University of Iowa, reporting on everything from Led Zeppelin concerts to protests against the Vietnam war. She went on to receive an MA in Speech Communication from the University of Kansas. At 22 years old, Arlene lost all feeling below her waist.   She regained mobility, but it was years before she received an accurate diagnosis of MS. Arlene endured years of undiagnosed chronic pain. Considering her debilitating symptoms, while climbing the corporate ladder, where she managed Human Resources Departments in a major airline, until her body stopped her. In her illuminating journey of determination and self-discovery, she explores how practicing Tai Chi and modifying her lifestyle and mindset, helped her retake control and move her life in the direction of possibility. She has been teaching Tai Chi for over 20 years in Chicago and Evanston, Illinois. Welcome to the program, Arlene. And thanks so much for joining us on Living Well with MS.   Arlene Faulk (02:16): So glad to be with you today, thanks for asking me.   Geoff Allix (02:19): And congratulations on the recent release of your book, Walking On Pins And Needles. It's all about how you discovered how Thai Chi can help people, yourself included, manage chronic pain. And we'll get more into that shortly. But, before we do, let's talk a little bit about your background. So, you were diagnosed with MS in your early 20s, which then spawned a series of debilitating symptoms and pain as well. So, could you tell us a little bit about your initial experiences of coping with the realities of having MS?   Arlene Faulk (02:54): Sure. Actually, it was in 1970. So, a while back, I had just graduated from college and was in my first job as a management trainee, so very excited, very busy. And in one afternoon, I lost all the feeling from my waist down, so that was pretty scary. And there was no diagnosis, it was inconclusive. Went away, I was young, I kept going. And then, it was some years later, that the symptoms returned, and it progressively got worse. I lost my ability to walk. I was having a lot of pain and still did not have a specific diagnosis. Just for your listeners, who might not have been around at that period of time, there was at least, in our country, the MRI was not a common test. So, there were CT scans, there were spinal taps. It was 21 years after that first episode of losing my feeling from the waist down that I got an official diagnosis of MS and that's when I had the MRI.   So, without going through the specifics, in terms of all that happened between the time it first occurred, and then when I got the diagnosis, it was basically, a series of fatigue, of losing my balance, not knowing if I could get across the street. Pain, I felt that my legs felt like they had needles just plugged into them. It was really like being plugged into an electric socket, is what it felt like sometimes. And then, my arms would feel like needles, just very sharp, prickly pain. So, it was scary, but I kept on going. I just thought, it was mind over matter, and it would figure out what it was. And as long as I could keep going, I would do that. And I was ascending the career ladder in a major corporation and was able to continue to do that, until one day my body stopped me and it stopped me completely, and said, "No more." And I laid on my couch for two years.   Geoff Allix (05:03): So, yeah. So, you went on to have a successful corporate career, but how did you deal with the stress of the high pressure? Or is that what ultimately stopped you, do you think?   Arlene Faulk (05:16): It's a very good question. I just kept barreling through it. I think I have a pretty high tolerance for stress and well, I thought so, higher than, we all have our limitations and we have to listen to our body, because if we don't, our body will stop us. I thought I was listening to my body. I exercised, I walked, I went to a gym, so I thought I was doing it, but I really didn't learn until later, that I was not really listening to my body until it stopped me. So, that's what I did. I did social things; I went to the gym. In terms of doing exercise, I did do that. I thought that was relieving the stress, as well as social functions. As far as figuring out what was going on, I, at times, pushed that to the side and said, "Well, the doctors can't figure out, what is really going on, and I don't know. So, I'll have to keep going, until they can figure it out."   There was a lot of frustration, a lot of frustration, because didn't know what it was. And it became scarier and scarier, because the symptoms started getting worse and worse, in terms of, I was living in New York City and didn't know if I could cross the street and all the traffic and busyness there. And so, I thought, "I have got to find out what this is." And I had a good team of doctors. They thought it was neurological, thought it might be MS, but they didn't have the tools to say specifically, that's what it was. They treated me as though it was MS. At the time, the best treatment was oral prednisone. There were no injectable drugs at the time. So, it was really, oral prednisone, and I had lots of doses of that over the years.   Geoff Allix (07:01): And that's a steroid, isn't it?   Arlene Faulk (07:05): Yes. It is a steroid and-   Geoff Allix (07:05): It's a short-term treatment to get you through relapse of-   Arlene Faulk (07:07): It's short-term treatment-   Geoff Allix (07:08): Yeah.   Arlene Faulk (07:09): Yes. And then, the times when I was very close to losing my balance and losing my ability to walk, which I did three times, completely lost it, I would go into the hospital and they'd do an intravenous treatment. That also was a steroid, a stronger steroid, for three days. And then, hopefully it would stop the inflammation. And it did, I think in every case, it stopped it. But then, I felt all drugged and for many years, did feel foggy and drugged and it took a while then, for that to decrease and my symptoms to decrease. It didn't make it better, it stopped the progression, is what it did.   Geoff Allix (07:59): Mmm-hmm. Well, the core reason we've got you on, talking to us, is about Tai Chi. So, could you say a bit about when you discovered Tai Chi and tell... I mean, listeners might not be familiar with what Tai Chi is. So, could you describe it and your discovery of Tai Chi?   Arlene Faulk (08:16): Sure. I will describe it. I mentioned that I was on my couch for two years, not knowing what to do. And all my leadership skills, decision making, that had served me so well, weren't working. I couldn't figure out what to do. Through a series of events, I was led to a healer, a practitioner of Chinese medicine and an acupuncturist. And I started seeing her. Did not know what I was doing, or what it was really about, but I thought, "Okay, I don't know what to do. So, I'm going to try it." And had success with her, she cared a lot. I really felt that she might be able to help me. And she was the one who recommended Tai Chi. So, when I started Tai Chi, I started with a group of seniors. I thought, "Well, why not?" What I knew about it was, it was from China and it was developed as a martial art.   So, I started and for the first year and a half, I sat in a chair and I did the breathing. I did a lot of visualization, in terms of the moves, of what they were doing. And in each class, the teacher had the students do walking, a Tai Chi walk, where you focus on the standing leg. You pick up the leg and you set it down and we call it being rooted into the ground. So, the middle of the foot is rooted and you can focus then on your alignment. And then, you pick up the other leg and set it down. So, it's an up and down motion. You go forward a little bit, but it's more up and down. So, what Tai Chi does, just in general, overall principles, it looks to people like it's a dance. When people see in the park, see people doing it, and it's very beautiful, in terms of flowing and beautiful.   What it is, is the focusing on the moment. There are weight shifts, three major weight shifts, and turning from the waist and the hips, the arms will follow keeping the body together as much as possible, as a single unit, working in harmony together. That helps you focus on the moment. When you focus on the moment, then it helps you relax. It helps stress go away because you can't be thinking about other things. So, that's one of the things that even helping me with my MS and my own story forward, that was one of the things that Tai Chi did. Because, the fear, the uncertainty, the pain can be hard to deal with. And sometimes, it's easy just to focus on those things. So, I really wanted to get out of that mode and do something positive. For a while, I didn't know if it was doing anything. I thought, "Okay, I'm going to keep doing it."   And I did. And slowly, I regained my ability to walk. I owe that and attribute that to Tai Chi, in terms of my walking. And in my classes today, I do walking, have the students do walking in every class, because I know how helpful it is, regardless of where your starting point is. And then, focus on the principles of being what we call again, rooted like a tree, nice alignment, and moving the body in preset sequence of movements, to balance is called balancing our yin and yang. And Tai Chi is based on the fundamental principles of nature, that everything relates to each other, and it's in harmony and it's in flow. And that's what Tai Chi is and some of the names of the moves in Tai Chi are named after animals, or water, or mountains to really reinforce that point.   Geoff Allix (11:53): And you can literally go from starting with a seated... If you're not able to walk, you started in a seated pose, and then getting ultimately, to the point where now, you can walk. Amazing.   Arlene Faulk (12:08): Yes, yes. That's why, and I have taught people in chairs, classes where everybody's in a chair and I've taught mixed classes. And what I say, is to visualize, because I had it happen myself, that you're around this nice energy, it is a very good, flowing energy that's relaxing. And then, if you visualize your foot taking a step, whether it is or not, or bending at the ankle, whether you can or not, then over time for me, I was able to do it. Now, I can only tell my story, but I have taught others that have made progress from where they are, in somewhat the same way that I have.   Geoff Allix (12:49): And would you say that mindfulness is a core component as well? You mentioned that you're in the moment, you are concentrating on what you're doing. [crosstalk 00:12:58].   Arlene Faulk (12:58): Mindfulness is a huge component. In fact, Tai Chi is often called Mindfulness In Motion. So, you think about it and people are familiar with and do yoga, which is another excellent, internal energy discipline. It really creates stillness through stillness and poses. What Tai Chi does, it creates stillness through motion. Still, you'll hear mindfulness in motion and sometimes, medication in motion. Because, it could be a medication, for people, in and of itself. So, it is a key component.   Geoff Allix (13:33): It also came up, about our mindsets, compelling us to try and control things as much as we can. And there's also an element that we need to let go, which might be a healthier path. Now, there's two things that occurred to me when this question came up. Because, partly I think, some of the people who are doing better with MS, are ones who've decided to do something themselves, to not be someone that things are done to, so that they would just receive whatever the neurologist tells them. They'll take that drug and it is what it is, and they will just carry on with their life. And then, they'll just-   Arlene Faulk (13:33): Right.   Geoff Allix (14:18): Do what they're told. I think, to me, the number of people I've spoken to, people who are proactive in their journey and they say, "No, I will actually do something." Which may be taking up Tai Chi, it might be taking up yoga, it might be eating a more whole food based diet, doing more mindfulness. That actually, those people who are more proactive, tend to do better, from what I've found, just personal experience. So, there's two sides to this. There's controlling as much as we can, which I think it could be a positive, in that we're actually proactive, but equally, maybe we take that too far and that we are trying to control our lives. I mean, you mentioned the start of your condition, that you were just trying to push through this. And I can understand that. Before I was diagnosed, traditionally, I did a lot of sport and I would just train harder. I do this rock [crosstalk 00:15:16] climb, I need to train harder to do that rock climb. I can't run fast enough; I need to do a bit more running.   And suddenly, it wasn't working, because I was [crosstalk 00:15:25] tripping still and I was thinking, "Well, I need to run more then. To stop tripping when I run, I need to run more." And that wasn't working at all. And that was alien to me, that never happened in my life. So, clearly that way of doing things wasn't working. So, how do you make that lane change to say, that actually, "We need to let go of that." And can Tai Chi help with that shift in our way of thinking?   Arlene Faulk (15:57): It's an excellent question, because I think, a lot of us do what you're talking about. I certainly did, in terms of trying harder. If it worked before, why isn't it working, if I just do more of it? So, it's a huge shift and it starts with a mental shift. A mental shift of, "I really can't control everything." It's not that we don't have any control, because we can do some things to help ourselves. But it is that things are going to happen and life happens and letting go is a major part of Tai Chi. Letting go of tension, letting go of preconceived ideas. And that has to do with first, learning, to be in the moment. So, I really did make a huge shift from living from my head, pushing through, to living in my body, in terms of letting go.   And that is a main principle of Tai Chi. We have to keep working at it, because our mind will drift towards, this to do, or this worry. And so, fear can creep in and it is a matter of focusing on this breath, or this particular move. You have a move called, Part the Wild Horse's Mane. And I tell my students in class, if Part the Wild Horse's Mane is the best thing you've learned today, isn't that wonderful? It's wonderful. You don't have any preconceived ideas of what that should be because you don't know. And so, Tai Chi is really nice that way, to have terms that we don't use in regular life, in a regular day-to-day life, I should say. And it is energy, learning to relax the muscles, relax the mind and move the energy through our body.   And you can feel that individually, as well as feel that in a class. And doing some teaching, still doing some teaching online since COVID, and I can feel the energy coming through the screen, sometimes. I tell my students that, that when we're doing it together, that really can happen. And I start before, even my [inaudible 00:18:14] starts in my book, I use a quote by an ancient Chinese philosopher, Lao Tzu, that says, "When I let go of what I am, I become what I might be." And that's my journey. And I think, maybe many people's journey. Whether they're in that right now, is that there's fear of the unknown. And what I've learned by letting go, is that's where the possibilities are, in the unknown. When I jumped into work with Nancy, that's her name, the acupuncturist, I was fearful. I didn't know what it was, I had no experience and I did it anyway.   So, sometimes we have to do that with good sense and good recommendation. I think that's probably important also, but we've got to try. And I think that we fear the uncertainty and particularly, those are principles with MS and any chronic pain that people deal with. There can be a tendency to say, "Well, I just can't do it." Or "I don't feel like it." And taking one step forward, regardless of what it is, not just thinking about it, but actually taking a step forward, even in the midst of uncertainty and even in the midst of pain. I see others doing that, not only MS, but in arthritis, both osteoarthritis and rheumatoid arthritis, fibromyalgia, lupus comes to my mind, even I have a man right now, who's dealing with spinal stenosis and he was not sure about Tai Chi and he's been doing it about eight weeks. And he said, "He feels pressure off his spine doing the Tai Chi moves." And he does some of it sitting down and some standing.   Geoff Allix (19:57): So yeah, that's very... And I think that idea that, you are being proactive in your wellness, but you are also being accepting. So, you can be both. You can be-   Arlene Faulk (20:10): Yup, you can be both.   Geoff Allix (20:11): Accepting, but you can also be proactive and do something about your wellness.   Arlene Faulk (20:15): Right, I don't think it's an either/or-   Geoff Allix (20:16): No.   Arlene Faulk (20:16): It's not either/or.   Geoff Allix (20:17): No. No, no. They sound similar, but they're not. No, it's not. So, when did you move into teaching Tai Chi? And how have you developed that approach to tackling chronic pain?   Arlene Faulk (20:34): When I started teaching Tai Chi, I had been studying it maybe five years. Usually, with people starting to teach, it's a lot longer practice, before they start teaching. But, the acupuncturist was going to open a new, holistic health center and said, "I want you to teach here." And I said, "I'm not sure that I'm ready. I'll ask my teacher." And he said, "No, I want your energy here." And I did it and started. So, the teaching of the principles, you have to take it up another level when you're teaching others, because you have to explain it, in terms that they might understand. And they don't always understand, like I didn't understand when I first started. Just said, "Okay, well, relax with it and give it time, and you will understand." And you don't always have to understand in your head. Your body might pick it up before your head does.   And then, it's been helpful. And to this day, I don't have the chronic pain now, but if I do have some pain, Tai Chi is the most helpful thing to me. There's something about the motion and the movement, that I can put myself in that moment and the movement itself, there's something that really speaks to my body after all these years, that is still helpful. So, that's basically it and other people are at different points. And I have seen some remarkable stories of people. I have a lot of people who do have chronic pain situations.   And so, I give it to them for trying, and we can always adapt. I always say, "When we start, the main thing is showing up." It's like, what you were talking about before, in terms of, "It's not an either/or, but being proactive." I think, even with the pain and not knowing what to do, it can be difficult. Days can be hard. And so, taking a step forward to do something, saying that you deserve to do something, that it might make a difference, is really the first step. And it can be a really long time and space, between thinking you should do something and actually doing it. You might have mentioned that similarly before, but that taking one step, people feel so good about themselves. Say, "I did it," showing up. So, I reinforce people for showing up.   Geoff Allix (22:59): Yeah. I've heard that from other people, that just taking... You don't have to run a marathon. If you can walk-   Arlene Faulk (22:59): No.   Geoff Allix (23:07): To the end of the street, or if you can walk to the end of your drive. If you take one more step, then you got a bit further than you did yesterday. And if the next day you get another step, that first step, that's the start of the path. That's-   Arlene Faulk (23:21): Yes.   Geoff Allix (23:21): Each time, you go a little bit further and at the end of that path, then you can do great things. But all of those things start with one step.   Arlene Faulk (23:30): They start with one step. I have a woman who contacted me. She was interested in Tai Chi. She has a degenerative health condition and they haven't diagnosed what it is, but she's losing not only muscle tone, but muscle strength. And it is scary to her. She's been very active and not only walking, but in sports. And so, it feels like her livelihood is slowly being taken away from her. So, she was asking about Tai Chi. She's not able to do a class right now, but I told her about, on YouTube, I do have some videos. That, if she sat in a chair and maybe that would be helpful. And I talked to her, she actually contacted me. And she said, "I want to tell you how excited I am. I went from being able to do one of your videos from two minutes to five minutes." She said, "I haven't felt this good in a long time."   I mentioned that because that's huge. To some people, that might not seem like a lot, but I give her all the credit in the world, because she's doing something and it's helping her and she's excited about it.   Geoff Allix (24:32): Yeah. And I think you need to reset as well. Because I sometimes-   Arlene Faulk (24:36): And reset.   Geoff Allix (24:37): I'm not going to do the things that I did 20 years ago. That's not an achievable goal. Actually, if I can walk for two miles, then that would be an achievement, not running 26 miles. If I set-   Arlene Faulk (24:37): Right.   Geoff Allix (24:59): That as a target, that's something I did before. That was a different time. So, me without MS and me with MS are different people. And I think, again, someone said this to me, "You can't judge yourself on what you used to do. That was a different person." So, you with MS, there's achievements now that would've been nothing to you before, but they are still an achievement now. And getting a bit better now is a positive thing. So, don't [crosstalk 00:25:22] judge yourself, what you could do for-   Arlene Faulk (25:26): Exactly. And not to judge yourself. And you're not a lesser person now than you were then because you can't run your 26 miles. And some people might compare themselves and say, "Oh, I can't do that. And I can't do that." And we don't want to get into that mindset. It is, "Look at what you can do, where you are now." Given your state of life and what's been thrown your way.   Geoff Allix (25:48): Yeah.   Arlene Faulk (25:49): We all have things thrown our way that we don't expect.   Geoff Allix (25:51): And we mentioned earlier on, right at the beginning, that you've got a book. So, you've gone to write a book about Tai Chi and there is information about the book and where you purchase it and so on in the show notes. So, have a look in the show notes. But how did it come about, writing a book?   Arlene Faulk (26:14): Excellent question. And the main thing I can say, is that my Tai Chi students were the ones who really encouraged me to write a book. I'm one who has kept some diaries, I've kept some notes. Certainly, when I was first seeing an acupuncturist, I'd come home and I'd write down what she said, because I really didn't understand when she said, "Really listen to your body. You got to start letting go. You have to take your body with you" what all those things meant. So, students would say, "I've been thinking about taking a class. I've been thinking about doing this a long time. Your story was very inspiring to me. And it got me to the point that I actually did something. You should write it for others." Excuse me? So my hope in writing the book is that it will inspire people to take one step to say, "Maybe, I can do something that's really going to be good for my health." Regardless of what their situation is.   It doesn't have to be MS. We all have things that we could do to help improve our life. But so many people think about it and don't do anything about it and lose momentum. So, hope that my story is inspiring and the perseverance, and I did have a discipline in moving through what I moved through. And yet, anybody can take from where they are right now, and make a step to start to improve. It could be exercise; I think that is important. Diet, you mentioned those earlier, in terms of improvements in diet, different parts of our life that really could help make our health and our daily life more pleasant.   Geoff Allix (27:58): Yeah. And I think as well, a lot of these things, people don't necessarily get told about them by their healthcare professionals, because-   Arlene Faulk (28:06): Right.   Geoff Allix (28:06): They're very much connected with what medication you should be taking. But I think-   Arlene Faulk (28:06): Right.   Geoff Allix (28:10): As well, it's not rocket science. It's if you eat a healthy diet, and people know what a healthy diet is. I mean, we talk about levels of saturated fat, and we talk about-   Arlene Faulk (28:22): Right.   Geoff Allix (28:22): Processing and most people know what's healthy. Your parents told you 30 years ago.   Arlene Faulk (28:28): Exactly.   Geoff Allix (28:30): Yeah, "Eat your fruits and vegetables." [crosstalk 00:28:32].   Arlene Faulk (28:33): Vegetables, right. Yeah.   Geoff Allix (28:35): That massively processed candy bar is not health food. I think, everyone knows this, they know it themselves. They know that if they do a bit of exercise, that's good for them. They know that if they're not too stressed, that's good for them. I think, yeah, it may not be our healthcare providers that are putting it front the center. But I think a lot of these things are fairly obvious as well. But I would like to ask you a question that we ask most people in some form, or other, and which is that if you were to distill your experience, specifically for you with Tai Chi, into a few core lessons that you've learned, that you give to our community of people with MS and the supporters of those people, what would these be? What would be the lesson, or lessons that you would say would be a core thing to take away?   Arlene Faulk (29:26): Okay. The first thing that comes to my mind, is focus on what you can do, not what you can't do. And you might make that a mantra for each day, or put it up on the refrigerator, or put it on your desk. Because it's easy to forget, not just to forget, but not believe it, from day to day. So, that is what we can do, rather than what we can't do. Think about somebody. It could be a family member, it could be a professional, it could be a friend, who can be a cheerleader and support for you. That if you take a step and it's scary, that they'll be there to say, "Keep going, keep going." I think that support, for me, it was a woman named Nancy, my acupuncturist. I talked about her being a cheerleader for my body.   I think, that's really important. The third thing I would say, is to take a step forward, even if it's very small and work on not being so hard on yourself. That it's okay, it's a small step and victories come in little packages and they can be monumental. And the last thing I would say, is breathe. When people ask me, "What's the one thing I could do, that could really make a difference?" I say, breathing. And that sounds simple, but it's not. I even see that in class, and people will say that "Oh, I'm glad you're reminding us to breathe, because I'm concentrating. I'm not breathing." I mean, intentional breathing, so that when we get stressed, even in pain, when there's fear, when there's anxiety, our shoulders tense up.   The best thing we can do is breathe, intentionally breathing to be in the moment and take deep breaths in and out. So, I think that there are some apps out there that have... I looked at one, at one point, that had breathing. It was for, I think it had this big, looked like a sun, a ball that was yellow, looking like the sun. And it was to stop and breathe, breathe in for about one minute. So, that I would say is important also.   Geoff Allix (31:40): I think, I've seen that, it might be Fitbit, or something like that.   Arlene Faulk (31:44): I don't know what it's called. Yes- [crosstalk 00:31:44].   Geoff Allix (31:44): It's bigger, isn't it?   Arlene Faulk (31:46): Yeah, the ball gets bigger, yeah.   Geoff Allix (31:46): It's smaller when you read that.   Arlene Faulk (31:46): Yeah.   Geoff Allix (31:48): Yeah, I've seen that [inaudible 00:31:49]. So, thank you very much for joining us on Living Well With MS, Arlene. So, we're thrilled to learn about the amazing work you're doing to help ease chronic pain through your Tai Chi practice. And I would encourage everyone to learn more about it by checking out your book, and you can find all of the links to connect to you and about your book in the show notes for this episode. So, thank you very much for joining us, Arlene.   Arlene Faulk (32:14): Well, thank you, Geoff. I really enjoyed talking with you.   Geoff Allix (32:23): Thank you.   Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from The Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website www.overcomingms.org. While you are there, don't forget to register for our monthly e-Newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   The Living Well with MS family of podcasts is for private, non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor, or other licensed healthcare professional. Our guests are carefully selected, but all opinions they expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.  

Coffee Break with community member Nigel Bartram | S4E13 bonus

Welcome to Living Well with MS Coffee Break #31, where we are pleased to welcome Nigel Bartram as our guest!   Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.   Nigel is a special member of our community – a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We’ll dive more into that shortly, plus we have a very special surprise for you, so stay tuned. We hope you enjoy this episode’s conversation with Nigel, coming to you straight from Paris, France.   Nigel’s Bio (in his own words):   I was born in London but moved around the UK as a child. After a 1st degree in History and then an MBA, my career landed mostly in marketing in the financial sector. In my last job in the UK, as Sales & Marketing Director of a retail stockbroker, following spectacular growth from start-up, I helped lead the company through a heavily oversubscribed IPO onto the London Stock Exchange.    Aged 43 I upped sticks to follow Caroline, my wife, in what was planned to be a temporary career move for her to France, along with our two young children, and my rubbish French. I became a house husband, looking after the kids, improving my ‘null’ French, and helping build a house in our Paris suburb (with stunning views towards the city. Temporary morphed into permanent. A joyful adventure, imbibing the beauty of our surrounds and French gastronomy became altogether more serious. Settling in France permanently meant I had to find a job. I retrained as a teacher of English, set up a language school, and taught part-time as a university Associate Professor.      All that was a breeze compared to a body which inexplicably started to go haywire. Overnight, out of nowhere, I lost 90% of the hearing in one ear (which happily came back of its own accord, more or less). In my long-gone student holidays, I worked as a tree surgeon, so heights held no fear for me. So how come I found myself sick with panic driving very slowly along the magnificent Gorge du Verdun with Caroline and the kids on board in 2003? I was petrified by the sheer drop into the ravine, something I’d have relished the challenge of scaling up in yesteryear. I suffered in silence of course.   I wasn’t diagnosed with MS for another six years, time enough for my ‘flappy foot’ and drunken sailor swagger to become my trademark walk. Bit by bit, bucket loads of other symptoms intruded into my daily life. Time enough also for MS to land me in plenty of challenging situations, some of which, even though they may have been difficult at the time, were clearly comic book stuff.   The idea of the book crystalised a few years later when I was on an OMS retreat. To my great surprise and delight, I realised that MS hadn’t robbed any of us MS suffers of our senses of humour. Indeed, it had given us a rich new vein of experiences to mine and chortle over, so important when up to half of people with MS experience depression at some point.   The deal was sealed when the retreat facilitators, Dr Keryn Taylor and Dr Craig Hassed, a world-renowned expert on mindfulness, warmly embraced the idea of such a book for the morale boost it would bring to people with MS, and those close to them, by presenting an altogether lighter side of the condition. Off I went to write down a few of my own stories and harvest those of other people with MS. What a job the latter proved to be!   Questions:   Nigel, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? You mention in one of the 3 key things to know about you, which can be found in the show notes, that OMS may have saved your life. That’s powerful. Can you speak a bit about that? Let’s shift gears a little bit and talk about a very exciting project you’ve just completed and are about to launch. You’ve written a book called ‘MS A Funny Thing’, which is an illustrated collection of humorous essays you’ve written through the years about your experience with MS. Can you tell us a bit about it? How has humor helped you deal with the challenges of MS? Another special thing about this book is that you’ve dedicated all the proceeds to several nominated MS charities. What compelled you to model the project this way? This book is illustrated, and I understand there is an interesting backstory to how you came to collaborate with the illustrator. Can you share a little about that? Since we have whet everyone’s appetite about this book, we have a very special treat for you. Nigel is going to read one of his essays from the book! This is very exciting, Nigel. It’s the first author reading on this podcast. Please take it away and perhaps share its title and a little context on the piece you’re going to read for the next few minutes. Wow, that was fantastic. Thanks so much, Nigel. How can people get their hands on your book? Before we ask Nigel one final question, I want to remind our listeners that May is Mindfulness and Meditation month at OMS. To mark that, tune into a special webinar on May 17, featuring a live meditation session with Phil Startin. If you’re listening to this episode after May 17, don’t worry, you can view a replay of this or any of our webinars at any time. Details on registering for this free webinar, as well as a link to replays of past webinars, can be found in our show notes. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day. Nigel, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?   Praise for Nigel’s Book:   “There are three things I'd like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you! Second, all proceeds go to worthy MS charities. Win-win! Third… now what was that third thing? I need to take Nigel's sage advice and stop nominating how many points I am about to make, don't I?”   Professor George Jelinek MD, Honorary Professor, Melbourne School of Population and Global Health and Founder of Overcoming Multiple Sclerosis   Three Interesting Facts About Nigel (in his own words):   I’m physically pretty handicapped, with an EDSS of 7, but still live a fulfilled life. I haven’t given up hope of getting some lost physical function back and am working hard to do that and making some early progress. I’m certain but can’t prove that the OMS regime saved my life, getting me through a flirtation with the grim reaper three years ago. Until fairly recently, we who’ve continued deteriorate physically despite following the programme religiously, have been a real OMS Cinderella, as though somehow, we're an aberration and should be ignored. This view is shared by quite a lot of my OMS friends who have similarly failed to experience any recovery. We nonetheless continue to adhere to the programme believing it to be a force for good even if it doesn't do what it says on the tin for us.   Nigel’s Links:   Nigel’s book MS A Funny Thing (well sometimes) is available on Amazon Check out the blogs Nigel has written on the Overcoming MS website Check out Nigel’s website, where you can get a taste of his writings Register here for the OMS meditation webinar with live meditation session, taking place on May 17; if you’ve missed the live webinar, catch the replay here   Coming up on our next episode:   On the next episode of Living Well with MS, premiering May 25, 2022, meet Arlene Faulk, Tai Chi instructor, storyteller, and author of the new book, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis. Learn how Arlene deploys the ancient practice of Tai Chi to help manage chronic pain associated with MS.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E51c Transcript Coffee Break #31 with Nigel Bartram   Geoff Allix (00:01): Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast.   If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.   Welcome to Living Well with MS Coffee Break #31, where we're pleased to welcome Nigel Bartram as our guest. Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you'll join me for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. That's podcast@overcomingms.org.   Nigel is a special member of our community, a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We'll dive more into that shortly; plus, we have a very special surprise for you, so stay tuned. We hope you enjoy this episode's conversation with Nigel, coming to you straight from Paris, France.   So Nigel, welcome to Living Well with MS Coffee Break. We're very pleased to have you on the program, and the purpose of this series is to get to know a bit better the diverse members of our community from around the world, and today you're joining us from Paris, France. So could you tell us a little bit about your day-to-day life?   Nigel Bartram (02:27): Yeah, thanks very much for having me. It's a great pleasure. First of all, a little correction. It's not your fault, but we actually don't live in the center of Paris, or actually in Paris itself, but in a very leafy suburb, with a forest on one side and the river Seine, you can see the barges going past from our bed in the morning, we're about 20 kilometers outside the center of Paris.   Geoff Allix (02:51): That actually makes it sound more idyllic than living in Paris now.   Nigel Bartram (02:55): Well, it is. And I think in common with what's happened in the UK and many countries post-COVID, people are beating a path out of big towns and cities to go to places where there are spaces which during confinement, as they called it here, are a bit more pleasurable than being cooped up in a rabbit hutch, which is many people's place in Paris.   But yeah, so my everyday life, it's I think largely unexciting. I'm fairly handicapped, so I don't get around very much, but I spend quite a lot of time writing on my computer and doing blogs for OMS and for other MS charities, and it's one of the reasons I had time to create the book. One of the great delights of living here is the gastronomy, which is a reason why we stayed and not went back. So lots of delicious meals, all conforming to the OMS guidelines, or as we called it on my retreat, legal food. And incidentally it's easier, I think, in the UK to eat out than it is here. People, with the exception where they get to know you very well, look incomprehensibly at you when you say, "Well, I can't have this, I can't have that, can't have that," and the rest of it. So they give you a plate of mushy green beans or something quite often. I exaggerate, but anyway.   Geoff Allix (04:34): No, I've been to France a number of times since following OMS diet, and I would say it's one of the more challenging places I've been to. We did eat a fair amount of pizza, because anywhere that does freshly made pizza, it's fine. Have pizza without cheese. But yes-   Nigel Bartram (04:56): I think that one of the saving graces actually is fish, because the French eat far, far more fish and seafood than in places in the UK. So even in a brasserie, you'll find fish on the menu, and they'll deign to not fry it or whatever, then you're okay.   Geoff Allix (05:19): And so when were you diagnosed with MS, and could you tell us a bit about that diagnosis and how that went?   Nigel Bartram (05:23): Yeah, I was diagnosed in 2009, but the first symptoms started appearing in 2003. And the reason for the delay was, I guess, twofold in the diagnosis. Firstly, that my GP, while I wouldn't expect him to have been able to diagnose MS, really ignored things that were happening to me, and just sent me for more and more physio, which of course did nothing at all. At the time, one of the big symptoms was what I call the floppy foot, drop foot. And so that was one cause of the delay. The other was that courtesy of SNCF, the French train company, I had a big accident so I was laid up for over a year and ended up suing the rail company. So that totally disrupted life, including getting on the trail of whatever it was that was causing the problem.   So I was diagnosed in 2009, as I said. Immediately after diagnosis, I had to go back to the UK for a week and left my wife, and the neurologist sent the results through. And in French, MS or multiple sclerosis is called sclérose en plaques, SEP they call it, for MS. And my wife is really, really bilingual, but you can only ever be totally bilingual, or you can only be bilingual to the extent you've lived in the two languages through the same life experiences. So of course, she's never had any cause to know what SEP or MS in French was, so she immediately Googled and was appalled to find out what it was that was wrong with me.   And I think it's a fairly common phenomenon that it's often tougher for the partner, for the wife or for whoever it is that's the bystander in this, than it is for the person themselves. Because I mean, we're helpless to some degree, although if you haven't got primary progressive MS then there are meds now available. They just haven't the faintest clue. And for me, it was actually a welcome relief, because I'd had this bag full of things happening over the preceding six years and I now had an explanation for it. That wasn't good news, obviously, but at least I had some rationale to explain what had been happening to me.   Geoff Allix (08:12): That's true. And for me personally it was like, I haven't got a tumor in my brain, or something. You start thinking, "What else could it be? It's something going on neurologically." And so it could have been worse, there is that.   Nigel Bartram (08:28): Yeah. Well, I think your imagination is better than mine. I didn't even think... What on Earth is causing the incontinence, whatever's causing my foot to drop and me trip up everywhere.   Geoff Allix (08:43): And when did you come across OMS, and how did that go?   Nigel Bartram (08:49): Yes, I came across OMS courtesy of... I don't know if you know the magazine New Pathways.   Geoff Allix (08:54): Mm-hmm.   Nigel Bartram (08:57): I can't remember how this happened, but anyway, I was in contact with the editor of New Pathways, and he told me about an event which was taking place in Brighton, where [inaudible 00:09:11] and Craig Hassed was there as well and was giving a conference in the Amex center there. So I went along, that was in 2014, and I absolutely bought what I was hearing.   And I was nowhere near on the OMS program, but I found over the course of the preceding years that I probably did the shopping most of all, more than my wife. And I found I'd gone off red meat almost totally. And so the family are complaining, "Why are you giving us all this chicken?" None of them liked fish, so I didn't stick my neck out that far, but the things my body was telling me that it no longer wanted. So actually the food side of it really didn't give me a big, big problem, because I was mentally and physiologically unconsciously heading that way in any case. So that's how I came across OMS, and then the following year I was lucky enough to go on a retreat, a weeklong retreat in Ammerdown. So that's my OMS story.   Geoff Allix (10:25): And you mentioned in one of the three things to know about you in the show notes that OMS may have saved your life. So that's quite a powerful statement, so could you tell us about that?   Nigel Bartram (10:43): Well, a powerful statement made by a non-medic, non-scientist. You have to take it with the caveat. Yeah, it was coming up on three years ago, I was admitted into A&E; well, twice actually, so they bundled me out the door at two o'clock in the morning the first time. And it turned out to be pancreatitis, which is probably caused by a gallstone escaping the gallbladder. I got septicemia, and I got a couple of other things. So I was six weeks in intensive care. And it's my honest belief, but I say it's an untestable thing to say, but that my body wouldn't have been strong to withstand all that.   The surgeon who subsequently took out my gallbladder to avoid any repetition with gall stones, he said... Because I was questioning whether, because it was the first time anything like this ever happened, whether it was necessary. And he said, "Well, about 50% of people who get pancreatitis like you die. So you're lucky to have escaped that. And then you had septicemia on top of it." And so that's my belief that it was some inner strength that really got me through it. It was very challenging to keep to the diet, to keep to the food regime in hospital, with hospital food. [inaudible 00:12:30].   Geoff Allix (12:30): Yes. I've had some infusions, and I found that staying in hospitals can be somewhat problematic, but yeah. Thankfully not for as long as you, so I could manage it for a few days, things being brought-   Nigel Bartram (12:45): They allowed my wife to come in with meals stuck in the fridge for a couple of days’ worth. So a mixture of starvation and brought in meals got me through it.   Geoff Allix (12:59): So you've touched on your book, so if we could change a little bit and talk about this, so it's a hugely exciting project you just completed, about to launch. And the book is called MS A Funny Thing, which is an illustrated collection of humorous essays that you've written through the years about your experience with MS. So could you tell us a bit about the book?   Nigel Bartram (13:20): Yeah. Sorry, just to slightly correct what you said. Well, first of all, the full title is MS A Funny Thing (well sometimes!), not always. And secondly, that I mean, I've got two or three stories in there, but I didn't want a book about my experiences. I want a book about lots of people with MS experience, and therefore it's a collection of the stories and a couple of poems by people that I've garnered over the years. So yeah, it's an illustrated book, each story or poem is illustrated by a funny drawing or painting done by professional artists.   The genesis actually came about on the OMS retreat because I was really surprised, agreeably so, by the real positivity that I found amongst my fellow retreatees. I don't know what I was really expecting, but plenty of laughter, lots of bonhomie, and so on and so forth. And so I thought, well, this is good. People with a sentence of MS don't necessarily throw away their humorous side at all. And the two facilitators, one's Dr. Craig Hassed, the mindfulness guru, and Dr. Keren Taylor, who's a consultant psychiatrist and works under the OMS umbrella. I bounced the idea off them of a book exactly as it's turned out and asked them what they thought. And they thought it was a very, very good idea. So I floated it to the group, who all liked it as well. So I was then able to tap a few members in the group for stories. And that was really the start of it.   Geoff Allix (15:29): And has humor helped you deal with some of the challenges of MS?   Nigel Bartram (15:35): I guess so. I never really thought about it in those terms, because looking for the funny side of things, and not in a desperate search, but through difficulty, often in retrospect, you do find something to laugh about, something that wouldn't have happened to somebody else if they'd been able bodied or not been in that particular situation because of the MS symptoms causing that. And through the book, being able to talk to other people about their experiences and helping them write up in some cases their experiences, and they're genuinely funny.   Geoff Allix (16:26): And another special thing about the book is that you've dedicated all the proceeds to several nominated MS charities. So what compelled you to make that decision? Why did you decide to model the project this way?   Nigel Bartram (16:42): Because I don't need the money. We don't need the money, particularly. I thought that... Choosing the charities, that they have given me a lot. So it's a way of paying that back, hopefully with dividends. So it was pretty much a no brainer to do it for those two reasons.   Geoff Allix (17:10): And I've heard that there's an interesting backstory with how you came to work with the illustrator for the book, so could you tell us a little bit about that?   Nigel Bartram (17:22): Yes. The idea for having illustrations came from a friend in London, and at the time one of her brothers was doing an art course, and I said, "Yeah, it's a great idea, but where do I find somebody to do the illustrations?" And as I said, her brother was doing an art course at the time, so she said, "Well, I'll get my brother to post something on the notice board," which he did, and there were a couple of responses, one of which turned out to be the person that did probably about the first 12, 15 illustrations, was an Italian student studying in London at the time.   And who she termed her favorite auntie; it wasn't actually an aunt, a blood relation, but her favorite family friend; had MS and quite severely disabled. And so it obviously chimed with her as a cause. But I think what also within that struck a chord was that despite I did have a Zoom with her so-called auntie one occasion, who was in a wheelchair, unable to use a mouse so using eye movement to control the cursor, but was nonetheless chirpy. And I think that that probably resonated a lot with the illustrator. And so for a pittance, she did the illustrations, and exercised a lot of patience in dealing with somebody who is completely unartistic, and on a good day can do a half sensible brief and on a bad day nobody can understand what I'm thinking about.   Geoff Allix (19:12): And since we've whet everyone's appetite about the book, we have a special treat for our listeners, and Nigel's going to read one of his essays from the book. So it's the first author reading we've had on the podcast, so please take it away. And could you share the title and a little context on the piece that you're going to read for the next few minutes?   Nigel Bartram (19:34): Yeah. Well, this isn't one of my stories, because I wouldn't lay claim to having the best stories in the book at all. This is one I selected it because it's quite punchy and not too long. So I thought I didn't want to send your listeners off to sleep, but if I did, with a smile on their face perhaps. But anyway, so the title of this, it's by somebody called Ian Daly, and the title is MS, Walking Sticks, Waterboarding, and Much More.   Multiple sclerosis is an insidious disease. The changes that it brings about can seriously affect your life, without you immediately realizing. For me, the first and possibly hardest change to come to terms with was needing assistance to be able to get around. For context, I was a reasonably fit 50-year-old man who would walk approximately five miles a day. I loved to walk. I've always tried to preserve some sense of humor when dealing with MS and its sackful of issues. I probably laugh at things that I shouldn't, say things that cause friends to look at me, and I suspect silently tut. Consultants and nurses roll their eyes, but I usually get a laugh, and that's what matters. It's my chronic illness, and I'll take whatever pleasure I can from it.   Anyhow, jump ahead a couple of years, and I'd started to find walking difficult and falls were becoming more frequent. My legs had stiffened up; controlling them was becoming ever more wearisome. The usual test, two consultants plus an MRI, and I'm awarded a title of MAM with PPMS, middle aged man with primary progressive MS. Hooray! I remain disappointed that there isn't a badge, some form of certificate, and media recognition. With legs that were always tired, I elected to use a stick to help keep mobile and hopefully more stable. Rather than burden the NHS in innumerable physiotherapist and occupational therapists, who I suspected have better things to do, I ordered an adjustable stick through the internet. It arrived and it was reasonably successful in enabling me to walk short distances.   Accepting I was now MAM with PPMS who needed a stick was slightly harder to come to terms with. I needed to shake off this pride thing. It seems this is a common experience and is the subject of many "do whatever you need to do to get by and stay strong" articles over the internet. Due to a rapidly wasting left leg, I soon became MAM with PPMS who needs two sticks. Isn't life grand? Walking short distances was now possible, although my mean-minded MS probably reasoned that I was getting around too well with my two sticks; with cushioned hand grips, no less; elected to introduce severe vertigo for good measure. So I now find I'm walking with two sticks across the deck of a ship during high seas wearing roller skates. Superb.   Incidentally, I was once visiting a doctor with my two sticks and severe vertigo for a series of blood tests. I was discussing weight gain with the nurse, and the fact it's hard to exercise when you have two sticks, weak legs, and vertigo, as you do when someone is sucking bucket loads of blood out of your arm. "Have you tried a treadmill?" says the nurse. Fortunately, she finished extracting blood and was concentrating on filling buckets and applying the useless cotton wool bandage to each of my shoulders, so didn't see my wide-eyed stare, and although I do say myself, magnificent eye roll, combined with my mutter of "Jesus" under my breath. Some people have very little idea of how lucky they are not to go home without having been hit by an office chair.   So MAM with PPMS who needs two sticks now has a further issue: stairs. I've come to detest stairs. They have the ability to hurt my knee in a uniquely painful manner. I attempt to minimize this by using my arms on the banisters to take some of my weight. This only really works on the way down. On the way up, it's a matter of hauling myself along while trying to lessen the weight on my leg and the searing pain in my knee joint which it causes. I can't use my sticks, as I need to hold onto something. Remember the vertigo? I suppose I could try a treadmill. "You need a stair lift." "What is it I now need?" "A stair lift." So MAM with PPMS who needs two sticks becomes MAM with PPMS who needs two sticks and a stair lift. Excellent. To be fair, I rate the stair lift as one of the best inventions of mankind. Okay, there's the wheel, the car, sliced bread, gin, and the internet, but really, I can now get up and down stairs. It does however come with a few tiny issues. Issue one. The stair lifts are generally designed for the elderly and even more infirm than I; their operation reflects this. Incidentally, I have nothing against the elderly. Some of my oldest friends are elderly, and I hope to survive to join their ranks one day, PPMS permitting. Anyway, I press a button and go upstairs. Pause to count grains of sand. Nothing happens for what I'm told is five seconds. It seems infinitely longer. Nothing apart from a very loud screech from the unit, no doubt to warn any other parking elderly person in the vicinity that something's about to happen and that they should dive for cover. The screech is loud enough to hurt my ears. Dogs run down our road to get away from the sound, whilst bats, no doubt attracted by the high frequency, try to get in the window. Being of a practical nature, I've removed the cover, voided the warranty, and unceremoniously jammed an ear plug into the speaker. It dulled the screech a bit, but I can still hear it, as I suspect all the dogs in the neighborhood can.   Issue two. After a five second delay and the eardrums have perforated, we're moving. As far as I can detect, there are three speeds: very slow, slow, and a bit slow, like my walking these days. When the engineer came to fit and program the unit, I was watching it as it made its leisurely way up and down the stairs, configuring the motor all the climb and corners. "Can you make it go a bit quicker?" "No. Sorry. That's it." I'm in no position to argue. Without it I'm confined to one floor. Admittedly, it'd be one of my choosing.   Third issue. Speaking to the company which makes the stair lift. Again, don't get me wrong, I know they have a specific demographic they target for sale, and that's grand. What they do not appear to acknowledge is that everyone who needs a stair lift is stone deaf and has a man with a red flag to walk in front of their car. Indeed, I have the hearing of a bat, and until recently owned an extremely large and very fast motorcycle. That was another casualty of the MS progression. Anyway, I digress. An example will be the call to let me know when the engineer was arriving to install the lift. "Hello? Is that Mr. Daly?" The lady speaking clearly and louder than I would generally have expected. "It is," I find myself shouting a little, as if trying to join in. "Mr. Daly, we're arranging for our engineer, Adam," not his real name, "to attend tomorrow. Would you prefer AM or a PM visit?" "AM, please." "Great. Would 11 o'clock be a good time? That should give you plenty of times to get washed and dressed and have your breakfast." "Er, okay. That'll be fine."   I'm not used to this level of interest or consideration. Like most people, I normally have to endure the "We're unable to give you a time. AM or PM is best I can do." Appointment fixed; I wonder if I have time to nip out to get the engineer a gift. Nothing extravagant, you understand, just a token. "When Adam arrives, he'll show you his identification badge. If you're not completely happy, please give us a ring to confirm his ID is genuine. He won't mind waiting." "If I'm not happy, I'll bounce Adam down the drive." "I beg your pardon?" "Nothing. 11 o'clock tomorrow then. Yep." You see, everyone must be elderly if they have a stair lift. I've done the thing where you ask for a note that you put on your account, you know the sort of thing, "Please do not treat Ian as an elderly gentleman. He's not elderly, neither is he a gentleman." This makes not a blind bit of difference. It is extremely annoying, until there's a problem or you need something.   About a year ago, I was cruising up to the first floor, coffee in one hand, motorcycle helmet on in order to deaden the sound, and my finger on the requisite button. I arrived upstairs, where I spent some time playing with the internet and drinking coffee. On attempting my return journey, nothing. The whole thing was dead as a dodo. So I telephoned the company to advise them of my dilemma. "I'm trapped outside." I thought I'd go straight for the dramatic introduction, as it would raise a level of medium to high panic.   An entirely reasonable and professional sounding lady began slowly to talk me through a list of resolutions that must have previously worked. Not today though. "Are you able to get downstairs, Ian?" "Of course," my sarcasm nerve had now kicked in, "that's why we spent four and a half grand on a stair lift." "I beg your pardon?" "Nothing. Just thinking out loud. Not really, I'm pretty stuck here." "Okay. Then there's something we can try." The fix turned out to be opening the footrest and then slamming it closed. "As hard as you can." "Really?" "Yes, really." This I did. Everything lit up like a Christmas tree and the warning bleep felt compelled to join in. All sorted. Well, almost. Adam, not his real name, turned up the next day to replace the main circuit board, and at a prearranged time.   After a lot of inane rambling, my message here is if there's something, anything, which can make your life a little easier, then for the love of God, go for it. Walking stick, crutches, stair lift, car adaptations, grab rails, false limbs, parachutes; they're all there to enable you to, or at least some semblance of you. Use them. Walk or shuffle to the park. Point at pigeons with your stick. Make sarcastic comments to call center staff. The possibilities are endless. Life with MS is hard enough.   I was showering the other morning and dropped the soap, such a trivial thing for a non-MAM with PPMS. It's only a small shower cubicle, so I bent double to pick up the soap, slipped, and became wedged in the corner, and to all intents and purposes upside down. It was like being waterboarded. If it wasn't for the grab rail, I'd probably have drowned. How my partner and I laughed. Ian Daly, a middle-aged man with PPMS, who needs two sticks and a stair lift, and a non-slip mat in the shower, and grab rails in the said shower, plus a grab rail to [inaudible 00:32:39] and a stool for the shower.   Geoff Allix (32:43): Thank you very much for that. That was fantastic. So now that you've whet our appetite with that, how can people get hold of the book?   Nigel Bartram (32:54): Right, it'll be sold on Amazon in print form and also as an eBook. It's due come out on the 30th of May, which is World MS Day. I believe we chose the date in order hopefully to get a higher profile for it. So it'll be coming out shortly after, I think this podcast is released, won't it?   Geoff Allix (33:23): Yeah. Yeah. This is coming out May. So you mentioned at the end of May is World MS Day, and also I want to remind our listeners that May is Mindfulness and Meditation Month at OMS. And to mark that, you can tune into a special webinar on May the 17th featuring a live meditation session with Phil Startin. And if you're listening to this episode after May 17th, don't worry, you can view a replay of this or any webinars at any time. And details of registering for the free webinar as well as a link to replays of past webinars can be found in the show notes for this episode. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day. So Nigel, thank you so much for being our guest on Living Well with MS Coffee Break.   Nigel Bartram (33:23): Could I just interrupt you a second?   Geoff Allix (33:23): Yep, sorry.   Nigel Bartram (34:16): Your plug was instantly longer than mine.   Geoff Allix (34:16): I know.   Nigel Bartram (34:19): I must just add that just if you go onto Amazon and Google, put the search MS A Funny Thing, there won't be anything like it, so you don't need to remember the full title of the book.   Geoff Allix (34:35): And we will have links in the show notes as well actually, so you'd be able to get to the book no problem.   Nigel Bartram (34:35): Okay. Fantastic.   Geoff Allix (34:41): So one final thing that we normally ask our guests, which is a bit of a tradition that we have, which is that if you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that could help people, particularly new people, adopt the OMS program, what would that advice be?   Nigel Bartram (35:04): One particular aspect or just one thing-   Geoff Allix (35:06): No, just anything that you think could help people who are maybe newly diagnosed or maybe new to the OMS program.   Nigel Bartram (35:16): I think I'd say two things, if I may.   Geoff Allix (35:18): Yeah.   Nigel Bartram (35:19): One is that although some people may find the diet difficult to come to terms with, there are so many great recipes that you can get through OMS. You won't be depriving yourself of an enjoyable gastronomy at all. And it is so utterly healthy that whether you had MS or not, it's such a good thing to do. The second thing I would say, and obviously I don't mean to plug your plug, but mindfulness is a real, real blessing because there are tough times. And being able to, I was going to use the word retreat, perhaps that's not the best verb to use; but anyway, to find a place to go to when you're in difficulty which you can emerge from tranquil and at ease with the world, having cured nothing other than maybe anxiety or stress, which is important in its own right, I'd highly recommend that.   Geoff Allix (36:29): With that, thank you very much for joining us, Nigel Bartram.   Nigel Bartram (36:34): A great, great pleasure. And do buy the book. And it comes complete with a testimonial from George Jelinek. Can I just read out what he says?   Geoff Allix (36:43): Absolutely. Yeah.   Nigel Bartram (36:45): Because he's got a bit of a teaser in there. "There are three things I like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you. Secondly, all proceeds go to worthy MS charities. Win-win. Third, now, what was it, that third thing? I need to take Nigel's sage advice and stop nominating how many points I'm about to make, don't I?" In order to unpack and understand that last comment of George's, you'll need to buy the book and read the preface.   Geoff Allix (37:27): Okay. With that, thank you very much. And I would encourage everyone, search out the book on Amazon. Actually, I should say that you can do this thing called Smile at Amazon and you can nominate a charity. So not only does the money go to charity from the book, but actually everything that you buy from Amazon, you can nominate a charity, and OMS is one of the charities you can nominate, and a small amount of any shopping at Amazon would actually go to charity.   Nigel Bartram (37:55): So it's a win-win-win-win.   Geoff Allix (37:55): Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.   To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in, and see you next time.   The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.  

Ask Jack: Meat replacements | S4E12

Welcome to the second season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to podcast@overcomingms.org.   Introduction   Welcome back for this season’s second installment of Ask Jack, and have we got a ‘meaty’ topic for you today.   This episode’s topic: meat replacements.   Jack has carefully curated several questions around this topic, and we have solicited some directly from the OMS community. With summer around the corner, at least for those in the northern hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences?   Thanks to Jack McNulty, we are about to get some answers. Happy to chat with you again, Jack. We’ve got an audience hungry for advice on this episode’s topic, so let’s dig right into our first question.   Questions   Jack, some people can give up meat itself, but not the taste or texture of it. Are meat placements OK in general within the OMS program? Also, if one does choose to use meat replacements, what should they be on the lookout for in the ingredients? Are there specific ones to avoid? Do you have any fun ideas for creating meat-like yet OMS friendly foods with ingredients like seitan and tofu? Jack, what is your absolute favorite type of veggie burger, and how can our audience source your favorite recipe for it? Switching gears to hear from some specific members of our global OMS community, Linda from Germany has taken to using soy crumbles which have to be rehydrated, making them like chicken or meat. Are they OK to use or are they too processed? And jumping continents but on a related note, Vickie from the US has another soy question. She’s curious about your take on soy curls. She’s not sure if you can access them everywhere, but her understanding is they are extruded and dehydrated soybeans. Can you explain the differences between Soy Curls and TVP? Here’s a question from Leissa: there are so many different types of vegan meat alternatives. It’s often easy to use these alternatives when cooking for a mixed crowd or for the family when you’re tired and need a quick meal. Can you recommend specific options for a quick, easy, OMS friendly, meat alternative meal? Nicola from Canterbury in the UK had a saucy question… about Bolognese. She wanted your best advice for a good ragu. She’s used red, green and brown lentils, but others suggest finely-chopped mushrooms or crumbled tofu. What are your thoughts, Jack? Finally, Jack, I know you’ve been vegan for a long while, so meat has been nowhere near your radar. When one makes a health-based or ethical choice to forgo meat, do you think it’s a good idea to even find substitutes that taste similar, or just leave it behind and explore the bountiful world of other delicious options that are nowhere near the same flavor profile?   Thanks for another illuminating episode, Jack. And I look forward to having you back in the thick soup of more questions on the next episode of Ask Jack, which will premiere on July 6th!   About Jack McNulty:   Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack has operated his own catering business and cooking school, while also finding time to write about cooking. He is currently operating his own subscription-based website providing instruction and recipes supporting a vegan lifestyle. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the OMS Cookbook, and authored the Eat Well chapter in the Overcoming Multiple Sclerosis Handbook.   Jack’s Links:   To get the veggie burger and grilled tofu recipes Jack mention in this episode, click here. Visit Jack’s website com for mouth-watering OMS-compliant vegan recipes, ingredient information, and to learn useful vegan cooking techniques. Be sure to check out Jack’s weekly international newsletter – VeganWeekly – written with the aim to inspire people to cook healthy plant-based food. Jack’s social media links are all here: https://linktr.ee/jackmcn.   Coming up on our next episode:   On May 16, “travel” to Paris to meet Nigel Bartram on Living Well with MS Coffee Break #31. Nigel is from the UK and has been a member of the OMS community since 2014. His latest project – publishing a book of humorous essays on his experiences with MS. You’ll want to smile after hearing his tongue-in-cheek impressions of life with MS, so please tune in!   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E51b Transcript Ask Jack #7   Geoff Allix (00:00:02): Hi, I'm Geoff Allix, host of Living Well with MS family of podcasts from Overcoming MS.   Jack McNulty (00:00:07): Hey everyone, Jack McNulty here. Welcome to another exciting new season of Ask Jack, a special Living Well with MS Podcast series. I'm excited and honored to answer food and cooking related questions from you, the Overcoming MS Community.   Geoff Allix (00:00:22): To submit a question for future episodes of Ask Jack, please email us at podcast@overcomingms.org, that's podcast@overcomingms.org. Please check out this episode’s show notes at www.overcomingms.org/podcast and dig into additional information and links on what we'll cover.   Geoff Allix (00:00:41): And now let's rev up our culinary curiosity and Ask Jack. And have we got a meaty topic for you today? The episode's topic is Meat Replacements. Jack has carefully crafted some questions around this topic and we've solicited some directly from the OMS community. With summer around the corner, at least for those in the Northern Hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows that meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences? So thanks to Jack McNulty, we're about to get some answers. Happy to chat with you again, Jack. And how are you?   Jack McNulty (00:01:21): I'm doing great, Geoff. Thanks. It's certainly good to be back. I'm really looking forward to our conversation today and to answer as many questions as we possibly can get to about meat replacements.   Geoff Allix (00:01:32): And I think this does come up a lot, doesn't it? I think on other topics we've touched on it because these are questions that do arise very often.   Jack McNulty (00:01:42): Yeah. I was just reading some studies earlier today as the billions of dollars that are just being poured into the industry worldwide in terms of creating these vegan meat replacements. It's really astounding how much money is going into it.   Geoff Allix (00:02:01): And even if it's not a meat replacement as such, synthetic meat is coming up now?   Jack McNulty (00:02:07): Yeah, exactly.   Geoff Allix (00:02:08): It’s more than just our health on the line here. We're also talking about climate; we're talking about deforestation.   Jack McNulty (00:02:20): Yeah. Animal rights, those sorts of things.   Geoff Allix (00:02:22): So yes, absolutely. And so yeah, if people are going to eat meat, then if that can at least not affect the planet, then that's another benefit. We're not talking about that. We're being selfish and talking about ourselves.   Jack McNulty (00:02:35): That's right.   Geoff Allix (00:02:35): The health benefits. But yes, I don't want to say it is an evil thing, there's certainly benefits to not chopping down huge amounts of Amazon rainforest.   Geoff Allix (00:02:46): So we've got audience hungry for some advice on this episode's topic. So we'll dig right in.   Jack McNulty (00:02:52): Mm-hmm (affirmative).   Geoff Allix (00:02:53): So Jack, some people can give up meat, but they really want the taste or the texture of meat. So are these meat replacements okay in general with people following the OMS program and if someone does choose to use meat replacements, what should they be looking for in the ingredients? Are there specific ones they should avoid? Are there good go-to meat replacements they could use?   Jack McNulty (00:03:21): Yeah. I think meat replacements can have a positive role in an otherwise healthy OMS lifestyle and diet. Obviously and pretty much like most everything else, there's a certain degree of personal responsibility involved. And that begins with a thorough understanding of a few things, ingredients, serving size, that sort of thing when you're purchasing something off the shelf in a supermarket. And I think that there are some reasonable factors to consider, for instance if you're looking at the nutritional content in the labeling, I think one of the first places to look is the sodium content. Like any processed or convenient type food, sodium is a big problem. And as we know from the HOLISM studies that have been done, high salt intake is not necessarily a good thing for people with MS, it should be a lower sodium intake. And so I always look at the sodium amount if I'm considering buying something off the shelf.   Jack McNulty (00:04:34): I like to aim for on a per serving basis, anything that's certainly less than 400 milligrams per serving. Now that's taking into consideration, otherwise healthy lifestyle, and diet, which I do follow. And generally I have a very low sodium intake anyway, and so that's my top amount there. Per serving would be about 400 milligrams.   Jack McNulty (00:05:04): I take a look at the saturated fat, obviously that's a big consideration for anybody following the OMS program. And so for me again, if anything is less than say two grams per serving, I'm generally okay with that. And that's again with the caveat that, that's for someone that's following an otherwise healthy lifestyle and diet where your saturated fat intake is relatively low.   Jack McNulty (00:05:33): Fiber is another thing to consider. Most of these products are pretty low in fiber. A lot of that's been stripped out. Some of them are better than others. I like to try to find something that's going to be greater than four grams. I think it's also important to understand that a lot of times, because this is a protein replacement in the diet, and a lot of times you're replacing fiber rich foods in your diet with something like a meat replacer. You're not eating your tempeh or legumes or lentils or something of this nature and replacing it with something else that's going to be much lower in fiber. And so I take that into consideration. So if I do that I either combine it with something that's fiber rich, or I choose a product that's going to have a higher amount of fiber in the first place. That's just something to consider.   Jack McNulty (00:06:27): I also take a look at binders and emulsifiers. Now these are common ingredients in any meat replacer, or any sort of convenient product. The problem is there's not a lot of information that's been done, not a whole lot on the scientific side anyway that I can find that states whether these products that are being used are, "What's the long-term ramification for human health?" That question is still out there. So while that's dangling, I tend to say, maybe my intake should be a little bit less in those particular areas, so that's certainly a driving force in any decision I'm going to make. The lower the amounts of those binders and emulsifiers the better.   Jack McNulty (00:07:17): I think it's also important to understand that meat replacements can work as a pretty good transition for some. So, some people that are new to the lifestyle, they're going to be coming basically to the program or possibly with a meat centric, dairy centric, convenience food centric, kind of diet. And to change that from that, to going into something full-blown plant-based that's going to be fiber rich, that's going to create some problems. That's going to create some digestive problems, that's going to create some bloating in the system and that sort of thing. And it's really recommended that the transition to help your microbiome should be three to six months, that sort of timeframe, and smaller portions as you ramp up as far as the information I've been able to find. And so, during this phase, sometimes these meat replacements really work as a nice transitional product to help get you on the right path towards plant-based.   Jack McNulty (00:08:37): When you do have a lot of problems and you switch over to a plant-based diet and you have this bloating and discomfort, that is a put-off to a lot of people and they walk away from the diet and say, "I don't want to do this sort of thing because it makes me uncomfortable." Understandably so, but maybe it's just you need to allow for a little bit of time into transition into it.   Jack McNulty (00:09:02): I think the bottom line really Geoff, it's not a meat replacement diet we're talking about, you have to look at this more in micro terms. It's more of a single use replacement. It works sometimes, especially if you're looking at products that have acceptable levels of sodium, saturated fat, fiber, use minimal amounts of binders and emulsifiers, that's probably going to be okay when viewed in context of an otherwise healthy diet.   Geoff Allix (00:09:37): When we say meat replacements here, we're talking about things that use the trade names, like Beyond Meat.   Jack McNulty (00:09:45): Exactly.   Geoff Allix (00:09:47): We're not talking about soy, seitan, those sort of single-   Jack McNulty (00:09:52): No, not necessarily although, some of those products used for convenience matter.   Geoff Allix (00:09:59): Yes.   Jack McNulty (00:10:00): You have to just imagine walking into a grocery store and every time I go into a grocery store, I look at the expanding array of offerings in the vegan section, which once used to be in the corner of the supermarket, now is pretty prominent and it's growing.   Geoff Allix (00:10:18): Mm-hmm (affirmative).   Jack McNulty (00:10:18): And so if you look at those things and you see sausages, you see schnitzel, you see the Beyond Meat products, the cheeses, the vegan butters and on and on. It's basically all kinds of foods that are being replaced just more on the convenient side. That's what I'm talking about.   Geoff Allix (00:10:40): And I would say actually from looking through those fairly extensively, the majority are not healthy on the OMS diet. They're-   Jack McNulty (00:10:50): That's right. If you look at the sodium, saturated fat, and fiber, that's going to eliminate 75, 80% of the products available today anyway.   Geoff Allix (00:11:02): Yeah.   Jack McNulty (00:11:02): So that's a very good way to just sort of weed out all the things that aren't going to work for us. Just look at those three things, that's usually going to be enough.   Geoff Allix (00:11:15): And it is possible to find some things. I mean, I have to say there was one recently I found it was actually in the frozen vegan section. They had veggie burgers, really if you think the original vegan burger from back in the 60s, 70s, mostly those contain huge amounts of ingredients, probably a lot of oils, but actually there was one that I found, which was really good, it was basically vegetables and because it was frozen, they weren't worried about things to prolong its life. And actually it was sort of held together because it was frozen. So you could grill it from frozen and the numbers were all good. And actually I thought, okay, there's a number of ingredients, they're all vegetables so if I'm going to eat a fast-food burger, that would be a convenient food that I think actually there's not too much wrong with that one.   Jack McNulty (00:12:22): That's right. And as a chef, I'm just naturally curious about a lot of things anyway. I'm curious about making things myself, but I'm also curious about what's going on in this space, are some of these things really worth it? And as an example, just a couple of days ago, I was in there and I saw a new product that was basically a schnitzel that was made out of pea protein and that sort of thing. It fits within the guidelines of OMS, right? And the sodium content was relatively low. And all these factors I considered, and I thought, what the heck, I'm going to just try it and see how it is. And I came home and I prepared it and ate it. And I was just highly disappointed. I mean the breading fell off, the texture wasn't right, the flavor wasn't there. And so I thought, I can do this better myself using a kohlrabi schnitzel or a celeriac schnitzel or something like this, that's way better than something that's purchased off the shelf. So many times that's going to occur as well.   Geoff Allix (00:13:34): And I think we [crosstalk 00:13:36], we mentioned taste and texture, and I think that's important as well, because if you were to eat a burger from McDonald's, Burger King, Wendy's, Five Guys, wherever, certainly the basic burger from a McDonald's or Burger King, I don't think it'll be very pleasant on its own well, not unpleasant. It just wouldn't taste of an awful lot. The flavor is coming from the other stuff that's in with the burger, their sauce, the vegetables, the salad, that's where the flavor comes from.   Jack McNulty (00:14:09): [inaudible 00:14:09] also, yeah.   Geoff Allix (00:14:10): Yeah. So actually we can still do the elements that make a burger nice. We can add a nice sauce, we can add tomato, we can add lettuce, we can add all these things and some pickles and whatever, all fine. And then it's the texture. So, it's not just taste, it's actually a lot of things like a burger may not have much taste, there's not an awful lot of taste of chicken. There's not an awful lot of taste of a basic burger. A lot of these things don't have a lot of taste and they're just vehicles really, but it's got that chew. And that's really what we're aiming for is the chew-   Jack McNulty (00:14:46): That's right. We've become very used to the idea of meat in our food that has a certain mouth feel, has a certain texture, that has a sort of umami-type taste that comes from the cooking of the meat, which is the teenager proteins. So these are the things that if you just break it down and look at that, you can think of ways, "Can I replace that in a healthier way without having to turn to that meat or without having to turn to some factory produced product?"   Jack McNulty (00:15:30): And that really becomes the key or the crux. And I think that it's far more important to develop this excellent eating and cooking habit or this understanding of ingredients, than it is to worry much about, how am I going to replace meat in this recipe that's calling for ground beef or something like that? There are tons of ways to do that. It's just that we have to get beyond that barrier. We have to move beyond that mindset of it needs to taste a certain way, the texture has to be exactly like this and et cetera. We can get it close in a plant-based world, it's never going to be a 100% the same, but my question is, does it really need to be? It's all part of an expanding viewpoint or way of looking at how we eat.   Geoff Allix (00:16:34): Yeah. And one thing I wanted to bring up is to get that texture sometimes just not overcooking vegetables is one of them, because there's a meal that I've recently... Which I was mentioning to you earlier. Actually I think the Indonesian meal is nasi goreng, it's rice-based. So basically a rice-based meal, it's got a lot of flavor from chili and a nut butter, I think originally it would be peanut butter, but I use almond butter, which is actually quite easy to make yourself from almonds and nothing else but almonds. So it's relatively high saturated fat, because nuts are, but the small amount of that, and then not overcooking vegetables.   Geoff Allix (00:17:19): So asparagus goes in there, tender stem broccoli, but they literally go in at the end of the cooking process. So there's a lot of chewiness, there's crunchiness from that. And there's flavor from the chilies and the almond butter and soy sauce and so on. But it has everything you need really; it doesn't lack suggest don't think this would be nicer with some chicken. [crosstalk 00:17:44]. It's a meal of itself that doesn't think, actually you've just given me a meal without the meat.   Jack McNulty (00:17:52): Yeah. And if you can look at eating as a way to just please multiple senses, then you can be quite happy having something that has just many different flavors and tastes and something that's crunchy. So you get that feel of different texture and something that has a lot of aromas, and you are just playing with all of these different senses to create a wonderful experience. And it doesn't necessarily need to have meat to do that. And it certainly doesn't need to have a meat replacer to do that as well.   Geoff Allix (00:18:30): And so you mentioned, so we've talking about meat replacements on the commercial side of it, but they are also closer to natural ingredients. So do you have any good ideas for creating meat-like OMS-friendly food with things like tofu and seitan?   Jack McNulty (00:18:51): Yeah. I think the most important thing to consider when you're creating meat, like preparations using various ingredients, such as tofu, seitan, I'd throw tempeh into that mix or ground up mushrooms or these sorts of things. Jackfruit is another, a very good meat substitute. I think the keys here are to create umami and to create texture, and there's some tricks to doing this sort of stuff. So let me just give you some ideas.   Jack McNulty (00:19:25): To create umami, the ingredients I like to use to create this sort of taste is things like yeast extract, which a lot of people would call Marmite. It's very similar to that. The yeast extract that I would get here in Switzerland is a German product, that's just basically a yeast extract. I know Marmite has some other things that go into it, but basically it works the same.   Jack McNulty (00:19:55): I think soya sauce, tamari and liquid aminos are fantastic to use. And if you use those in combination with a vinegar, specifically a brown rice vinegar, or a Chinese black rice vinegar, which is fantastic, or even a balsamic vinegar, if you use the soya sauce tamari mixture and a vinegar in combination, it creates a lot of umami and it works wonderfully when you're working it into ingredients.   Jack McNulty (00:20:31): Powdered mushrooms are another thing that I like to use quite a lot. And so you can buy powdered mushrooms, but I think it's just really simple to just go buy some dried mushrooms. I like shiitake or porcini, are the two that I would use the most. You just bring them home. I have a coffee grinder, so I pop them in the coffee grinder and I just grind them. And then I use that powdered mushroom as a seasoning. So I cut back on sodium and I'm increasing the umami by doing that. It's a wonderful way to bring additional flavor in. And of course, white and yellow miso also worked wonderfully to bring that sort of umami, that meatiness into a dish.   Jack McNulty (00:21:14): And liquid smoke, which I think we've talked about on the podcast before. And again, liquid smoke will introduce a sort of a hickory or charred flavor to food. You do have to be a little bit careful, not all liquid smokes are healthy, but there are some that are quite good that basically just have water and the aroma that's been extracted. So it's perfectly healthy. There's nothing unhealthy about it. And you're just using a couple of drops to create a big punch of flavor.   Jack McNulty (00:21:52): In terms of texture, so tofu and seitan come to mind as things that you can play around with, with texture. So tofu I find is excellent. And especially you can do a couple of things with tofu. So I'm talking about firm tofu, not something that's going to be really soft, but a really firm tofu.   Jack McNulty (00:22:19): And so you unpack it, you drain it, you can pat it dry, cut it up in little chunks. And one thing that I found that works really great is, bring a little pot of water to a boil and then salt it and give it a good amount of salt. It should taste a little bit like the sea. And once it comes to a boil and you've salted the water, put your tofu in there and boil it for about three minutes and then just let that cool in the liquid for about 15 minutes off the heat, drain it, take those tofu pieces, put it out on a towel and just let it come to room temperature. Ideally, you'd want to do this a day in advance and put it in the refrigerator. And it turns into sort of a spongy consistency, that's very similar to paneer and it works great in curry dishes. So it's going to give you a really fantastic sort of experience in a curry dish.   Geoff Allix (00:23:19): So I just wanted to go into a bit more about what these things actually are. So tofu is entirely made of soya beans, yeah?   Jack McNulty (00:23:30): That's correct, yeah. So basically it comes from soya milk, so it's made from soya milk.   Geoff Allix (00:23:35): I was going to get on to it. So is there a concern, because I know that some soya beans are very genetically engineered, genetically modified, and there are risks with soy, aren’t there? So are you careful with, or do you worry about having too much tofu because of too much soy that might have, there's all sorts of things aren’t there, like potential hormones?   Jack McNulty (00:24:03): Yeah, there's a lot of discussion about this. And without having to go into too much detail, maybe we just talk about soya as a whole on another podcast. But a lot of people do have concerns about it, but then on the other hand, there's a lot of well-respected doctors, nutritionist, et cetera, that are out there that really put that those concerns to [inaudible 00:24:24]. I think the most important thing with soya and soya products is to make sure that you're purchasing something that's not from genetically altered soya beans.   Geoff Allix (00:24:34): Right.   Jack McNulty (00:24:35): Which is increasingly difficult to do, but not impossible. And you can find that relatively simple.   Geoff Allix (00:24:42): Like you said, I think there is a whole episode on soy because I've got load of questions. So tempeh, is that still soy, but has some beans-   Jack McNulty (00:24:55): Tempeh can be made with a number of different whole beans, but typical typically made from soya. So it originates from Indonesia and basically, it's just the whole bean that's been cooked and then it's inoculated with a mold. It sounds great at this point. And then it's just allowed to age, that's why when you have it it’s compressed and it has that sort of whiteness around it, that's actually just the mold and-   Geoff Allix (00:25:21): And seitan then is-   Jack McNulty (00:25:24): Yeah, so seitan is basically 100% gluten. So it's the gluten that's been removed from a wheat kernel and the starch has been washed away from it. And what you're left with is just pretty much a 100% protein and that can be utilized to create meat-like substances by combining the dry ingredient, the gluten itself, sometimes with another kind of flour, like a chickpea flour with an umami rich liquid, or sometimes even ground-up tofu. But basically, you're going to have a lot of soya in it, soya sauce or tamari, that sort of thing. Aminos work well and a lot of heavy flavoring. And then what's critical then is to think about it in terms of making a bread. So as you're kneading the seitan, the more you knead it, the firmer it becomes as an end product. So if you want to create something relatively soft, you just basically mix those ingredients together and don't knead it at all.   Geoff Allix (00:26:44): So seitan is something you [crosstalk 00:26:46] you would typically make it yourself rather?   Jack McNulty (00:26:49): No, not necessarily. You can buy a lot of seitan products. Personally, I find that it's really simple to work with. It's really not difficult to make it. And we can put some instructions up in the show notes on how to do that, but there's lots of variables. And so, once you get everything mixed together, then you have to pre-cook it. And so you can steam it, you can cook it in the oven, you can boil it. All of these things have an influence on how the end product or the texture is going to be. And of course, however much flavor you put into it and whatever liquid you're cooking it into, the more flavorful, the better. And that's going to have an influence on how it tastes in the end.   Jack McNulty (00:27:32): But you can literally prepare a roast, prepare something that looks like a sliced turkey breast or something like this. You can prepare meatballs; you can make burgers with it. There's just so many different ways to think about it. And it's an ancient technique and this goes back thousands of years to the ancient Chinese and Japanese that figured out how to do this.   Geoff Allix (00:27:59): But would that have gluten in it presumably?   Jack McNulty (00:28:03): It's quite a lot. [crosstalk 00:28:05].   Geoff Allix (00:28:11): Good for protein?   Jack McNulty (00:28:11): Excellent for protein. Not so good if you're watching your gluten intake.   Geoff Allix (00:28:16): Right. So that's [inaudible 00:28:16], but not gluten. Tofu we're avoiding genetically modified, but good for protein?   Jack McNulty (00:28:25): Yeah, excellent for protein. Exactly. And I was mentioning, you can boil it. There's another technique to change the texture and that's freezing it. So if you freeze a block of tofu and then defrost that, and let it come to room temperature, you'll find that the texture has completely changed. That has firmed up and in the internal bit, if you cut into it, it is very spongy. And so it's going to readily absorb flavor. But what's interesting is if you cook it, especially if you cook it in a liquid, it will hold its shape much better than if you didn't freeze it beforehand. And so that's just a technique to change a little bit the texture of using something like tofu.   Geoff Allix (00:29:10): And is it worth getting a tofu press? Do you think to remove what, I see a lot of these things where they say, try and remove as much water. You can certainly buy it now in lots of different forms. [crosstalk 00:29:21].   Jack McNulty (00:29:21): I don't know, I use double paper towel in the palms of my hand.   Geoff Allix (00:29:25): Okay. That works.   Jack McNulty (00:29:29): I don't get too... I know a lot of recipes say, "You got to get out as much water as possible." But I've found that if you get out the surface bits and especially then if you cut it and then press it again, once it's cut, you're going to get out enough and it's not going to have a huge impact. That's my experience as a cook discussing that.   Geoff Allix (00:29:52): And just to mention you touched on jackfruit as well. That one it's just a single vegetable product, but that's low protein, isn't it?   Jack McNulty (00:30:05): I believe so, I'd have to check the nutritional info.   Geoff Allix (00:30:07): I'm pretty sure that one doesn't tick the protein box, but it does tick the other boxes.   Jack McNulty (00:30:12): Yeah. And people have made a lot of different things with jackfruit, like taco filling, burrito filling that sort of stuff, mixing it with barbecue sauce and you can come up with some really interesting... I use it to make a Bolognese which is fantastic and it works great in that environment.   Jack McNulty (00:30:31): Another thing you can do is just take an oyster mushroom, just a normal, raw oyster mushroom. If you can envision this, take a fork and just run the fork along the oyster mushroom, and it will break up into strands. And then if you cook that in some tomato-based sauce or barbecue sauce or something like that, once it's cooked and then working it into the sauce, you can really create something that's going to be like a pulled pork or something of that nature. It's really fascinating what you can do with mushrooms.   Geoff Allix (00:31:07): In the vegan area of my local supermarket, they do a pulled mushroom. I didn't realize you could do it easily with a fork.   Jack McNulty (00:31:16): Yeah, give that a try. It's really fascinating. It just pulls apart in strands. You don't even need to use a fork, sometimes I just peel it with my hand. It's pretty easy to do.   Geoff Allix (00:31:26): So we've talked quite a bit about burgers. What would be your absolute go-to recipe for a veggie burger? What would you do if we are getting into hopefully, a summer season in the Northern Hemisphere, and you want something to stick on a barbecue or you want to create a burger, what would be your-   Jack McNulty (00:31:45): Well, as I like to say, as a good American would always say, "There is no season for a burger, that's all year long." Well, let me give you two ideas. So the very simple idea, you can get like a portobello mushroom, which is in essence a giant chestnut kind of mushroom. You can cut off the stem, just work it in and marinate it in a little mixture of soya sauce and vinegar, like I said earlier, and then just wipe it off on a nice oil grate of a grill and just grill it and just use that as your burger. So there's no need to really form anything else. It itself has the shape of a burger. And then just put it between two slices of some nice whole wheat bun or something like that. I usually do that with a guacamole and a slice of tomato in there, and maybe some chili to spice things up a bit. And that's delicious. That's just a really simple way to do something that tastes quite meaty, surprisingly meaty.   Jack McNulty (00:32:56): But if I were to make my own and I'll put this recipe up in the show notes, I use a combination of ingredients. So it seems at first like, oh my goodness, this is a lot of ingredients, but they're all doing something.   Jack McNulty (00:33:09): And so I use cooked black beans, black rice, and chopped brown mushrooms, so that's the protein base. The chopped brown mushrooms are just like chestnut mushrooms, black rice, and the cooked black beans. I get all of that and puree it together. Then to give it a little bit of texture, I'm using ground walnuts and a half a beetroot that's just graded up. Then I start working in my umami flavors now.   Jack McNulty (00:33:36): And so I use in addition to herbs and spices, I'm going to use a little bit of miso, usually I go white or a yellow miso, which is a little bit milder. I use soya sauce and balsamic vinegar, and to bind it all together I would just use chickpea flour, which works great as a binder. And then sometimes I do add a little bit of liquid smoke into the mixture. I just formulate it into burgers. And then what's really important is I refrigerate it and I refrigerate it for at least a couple of hours. So this is something you can actually do a day in advance, and then you can put it directly on the grill. It functions exactly like a burger would function. And the texture is surprisingly close to a burger.   Geoff Allix (00:34:22): And chickpea flour, you mentioned that's that same as wheat flour, isn't it?   Jack McNulty (00:34:27): Yes, exactly. I think that's about as far as I go with burgers. I mean, once I came up with that particular idea and recipe, I just thought, well there's no reason to develop further, I'm quite happy with that one. And the combination of the portobello mushroom with a guacamole or something, which is my wife's favorite, so that's usually the one that we go with.   Geoff Allix (00:34:55): And you're saying, putting it in the fridge, I actually quite like freezing them as well, because first thing they hold together if they're frozen, but also just because then it becomes a fast food. It's as easy to make six as it is to make one.   Jack McNulty (00:35:10): That's right. And you can use that same mixture because everything's already cooked, so you can use it. And instead of creating a burger, you can create little meatballs and throw it into your favorite pasta dish or something of that nature. So you're right, freezing is a great way to go.   Geoff Allix (00:35:30): I think a lot of whole food cooking is more labor intensive, and so I think freezing is a good way rather than making every single meal from scratch, it is more labor intensive than buying ready prepared meals. But if we can make them and then freeze 50%, then suddenly we've got an easy-to-cook meal for next week that we don't have to cook everything from scratch and freezing for a couple of weeks, if not a month or more, it does retain a lot of the nutrition, doesn't it? You said actually things like tofu can actually be improved in some ways form freezing?   Jack McNulty (00:36:14): Yeah, that's exactly right.   Geoff Allix (00:36:15): And I think obviously things that sometimes are chili or something like that can actually taste better reheated. I don't know why.   Jack McNulty (00:36:21): Oh yeah, definitely.   Geoff Allix (00:36:22): I don't know what's happening there.   Jack McNulty (00:36:23): I totally agree. Totally agree on that.   Geoff Allix (00:36:25): So to move on to some of the specific questions from members of the global OMS community, there's two questions and I'm going to ask both of them because they're related. So Linda from Germany has taken to using soy crumbles, which have to be rehydrated, to sub for chicken or meat. And so she wants to know if they're okay or are they too processed?   Geoff Allix (00:36:49): But also Vicky from the US, has another soy question. She's curious about your take on soy curls. She's not sure if you can access them everywhere. I've certainly not come across them, but her understanding that they're extruded and dehydrated soybeans. So she was asking, could you explain the difference between soy curls and TVP or texture vegetable protein. So both these things sound quite similar, so soy crumbles, soy curls, are they similar things and are they-   Jack McNulty (00:37:19): Similar in the sense that they generally use soya and that's about where-   Geoff Allix (00:37:23): Okay. They are quite different. Okay.   Jack McNulty (00:37:25): So soya curls. Did you say you came across those already?   Geoff Allix (00:37:29): No, I haven't come across soy curls, but-   Jack McNulty (00:37:31): I think it's more of an American thing at this point. It's a company in America, that's developed it and it's basically using the whole soya bean. And so the soya bean is cooked, it's dried and then it gets cut up and extruded into these little pieces. And so it needs to be rehydrated to use it. You'd have to soak it in water usually about 10, 15 minutes or so. And then you can start adding all your flavors and then cook it as if you were cooking some meat or something in a frying pan or whatever. You can use it in various products, lasagna, tacos, that sort of stuff. So because it's soya, it's going to be very high in protein. It's going to taste very bland unless you put a lot of flavoring into it, and this is where the ingredients that we talked about earlier, the umami ingredients really come into play.   Jack McNulty (00:38:31): Now TVP, textured vegetable protein, I think is what that stands for, is generally made from soya. So it's a byproduct of the vegetable oil industry. And so the oil, once it's extracted from whatever bean it is, let's talk about soya. So it's extracted from soya and basically then you're just left with really soya flour at that point. And soya, so that's the fat that's been denatured or taken out of the soya flour, most of the fat.   Jack McNulty (00:39:12): So then that fat by the way, gets mostly removed using solvents and high temperatures. Just to be aware of that, that's how that gets extruded. But you're left with the soya flour, in that soya flour is very little impact from the solvents that were used. So there are lots of tests that have gone on about that. And there's no real risk there from the human health perspective. But basically, you're left with this processed bit of soya, which then gets formulated in heat into chunks. And then it gets extruded into pieces.   Jack McNulty (00:40:00): So the pieces themselves are going to be very light and spongy inside once they go through their extruder, which heats them and then they're immediately exposed to colder air, which creates this puffing up, but usually around three times the size and that's what creates that sort of sponginess inside. So they function almost identical to a soya curl in that you have to rehydrate them and then cook them. And if you don't add any flavoring to them, you're going to be really disappointed in the flavor because there won't be much flavor. It'll be very bland and you'll wonder why did I do this? But if you do add a lot of umami to it, they certainly aren't bad in certain isolated situations.   Jack McNulty (00:40:52): I would say overall, I have used them. I'm not hugely impressed with TVP, I think there's other things that you can use that are better. For instance, okara comes to mind. Okara is what's left over from soya milk pressing. So the soya beans that are pressed to create soya milk, what's left behind, that meaty substance left behind is called okara. It's very common, you can buy it in almost any Japanese store and you can just cook that the same way that you would cook these TVP products and you would have a lot more protein in that particular product than you would using something that's TVP.   Geoff Allix (00:41:41): Would you say this goes the same for soya crumbles as well?   Jack McNulty (00:41:45): Yeah. Soy crumbles are in essence TVP.   Geoff Allix (00:41:48): Right. Okay.   Jack McNulty (00:41:49): So basically, it's just different names for them depending on where you are in the world. So I forget what they're even called here in the German side, but it's very easy to find them in any sort of health food store. And I use that term health food rather liberally.   Geoff Allix (00:42:14): So you wouldn't say it's whole food, certainly these things aren't on that, they're not making us healthier, but they're not necessarily-   Jack McNulty (00:42:26): I try to stay away from that term whole food-   Geoff Allix (00:42:29): Okay.   Jack McNulty (00:42:29): Because really, the only thing that's whole food is an apple. There's nothing that's going to get done to it. And so I like to look at these products and say, okay, which one is going to be better? So soya curls have nothing added to them and nothing taken away from them. So in essence, that's going to be closer to the concept of whole food than TVP, which has gone through a process where the fat has been removed from the soya. And then it's processed into flour before it's extruded. So that's going to have something added to it in the sense of solvents and something taken out in the sense of fats. And so, there the alarm bells would go off and I'd want to look into that product a little bit more before saying whether I would use it or not.   Geoff Allix (00:43:24): Okay.   Jack McNulty (00:43:24): But people talk about whole food, non-processed whole foods all the time in terms of diets, but it's very rare. The minute you cut into an onion, you've already processed the onion to some degree. So it’s very rare to come across anything that hasn't had some degree of processing, but it's also very difficult to find something that's really a 100% whole food, unless of course you're eating something raw in its natural state.   Geoff Allix (00:44:01): But these things aren't necessarily bad for you, but just keep an eye on the ingredients, some of them may be over processed, but in general?   Jack McNulty (00:44:09): Yeah. I would say the soya curls are better than the other products, but it's the thing that everybody's got to decide for themselves. But from my perspective, I would say minimal amounts is probably better than a mainstay of your diet, I wouldn't use them every day.   Geoff Allix (00:44:30): Okay. And we've got another question from Lisa asking, "There are so many different types of vegan meat alternatives, and it's often easy to use these alternatives when cooking for a mixed crowd or for a family when you're tired and need a quick meal. So could you recommend specific options for a quick and easy OMS-friendly meat alternative meal?"   Jack McNulty (00:44:52): Are we talking about stuff that you buy that's convenient?   Geoff Allix (00:44:55): I think it's the convenience. I think she's saying if she's tired, needs a quick meal, feeding the family, what would be a good meat alternative to put in?   Jack McNulty (00:45:08): Yeah. And I really sympathize with someone that finds themselves in this position. That's not me, but I certainly understand that's not a simple situation to be in. You're working all day, you're tired. Maybe you have a little bit of an MS flare, you have kids to feed and you come home and you have to make something, what do you do? It is tempting to go to the supermarket and to buy something off the shelf and put it on the stove and heat it up or put it in the oven and heat it up and there you go, that is terribly convenient. And that's exactly what the food industry wants us to do.   Jack McNulty (00:45:49): So I think rather than taking that approach, I think it's much better to invest a little bit more time earlier in the week and make a plan, to sort of plan out a little bit, what am I going to do about food this next week? Get some help in the kitchen. If you have kids, get them to start chopping vegetables, get them involved, to help put things together on the weekend or towards the end of the week that you can freeze or that will keep in the refrigerator for a little bit of time. And so those are the things that I would tend to go with.   Jack McNulty (00:46:21): You can certainly make vegetable curries that are delicious and incorporate things like tofu or some of the other things that we had talked about today that go in and create this sort of meatiness in a curry. Something served with rice or something, that's going to please anybody, whether you're vegan or not, you're going to be happy with that kind of dish.   Jack McNulty (00:46:44): I think making something like a big bowl of beans, like a chili or something like this, you can make it in large portions. And like you said earlier, it doesn't cost anything to make 12 portions and it doesn't cost more than making four portions or something. So you might as well make enough that you can either freeze a portion for later or just eat during the week, maybe change it up a little bit and just add some different vegetables in it.   Jack McNulty (00:47:16): Lasagna is another thing, it's so easy to make a lasagna. And really all you need is a good tomato sauce, you need some good vegetables, prepare those ahead of time. You just go buy the pasta sheets, dried pasta sheets that don't have an egg in them are very easy to buy. You don't need to pre-cook the pasta, which is great. And you just build a large lasagna adding some of the things that we talked about earlier in terms of building those flavors, using vegetables that are going be median in nature, like eggplant or mushrooms or something of this nature, putting something together and boy that lasagna well, I guarantee you it'll be hard to keep it around much more than a couple of days, because it's going to taste really good.   Jack McNulty (00:48:03): You do need to know how to make a very good bechamel, that's key because a lasagna is very creamy, but that's very simple to learn. I think things like a shepherd's pie is very simple to do using mashed potatoes and a whole host of different vegetables. You can, if you want to incorporate some of these easier meat replacement things like soya curls or okara like we talked about earlier into those vegetables, but don't make it the main star, just have it in addition to a lot of the other vegetables that are there.   Jack McNulty (00:48:40): You can make a Bolognese, very simple to make a big portion. You can make it very easily so you always have it on hand. Really doesn't take a lot of effort to come home and unscrew a jar of pre-made tomato or Bolognese sauce and make a round of pasta for everybody. That's always going to be a pleaser.   Geoff Allix (00:49:03): And you mentioned first curry. So if we are looking quick and easy, one thing we mentioned frozen, but I like to have things frozen out, they are sort of for emergency. We just need to eat quickly, low effort meal, but actually curry's really quick that way, so literally we look at onion. So the base is really just starting off with onion. It's going to have curry spices, which are premixed in a tub, but I don't bother. Yes, you could go and say, "Okay, I'm going to grind my own spices and mix them up." Absolutely, you could do. I'm sure you do that. But I buy it pre-made and say, "This is a [inaudible 00:49:51] flavored one, it has the mix already." And it's going to have chickpeas, it's going to have spinach and it's going to have tomato, like soup tomato. I don't think much else goes in there really.   Jack McNulty (00:50:11): And maybe you can do some roasted eggplant or something. I mean, you can always add different things.   Geoff Allix (00:50:17): Yeah. You can add different things, but the stuff I've put in there, that's taken me five, 10 minutes maximum. It doesn't take as long as the rice takes to cook. To cook the sauce and the chickpeas, give it a bit of chew to it and some protein. And I mean, I'm talking tin chickpeas here. I mean, obviously, otherwise you have to soak them, but that's a quick meal.   Geoff Allix (00:50:39): And another one that I like is pasta you mentioned, and [inaudible 00:50:43] type sauce where literally we put in onion, garlic, again tomato, chili. So some fresh chili goes in there and then some vegetables. So we tend to do it with some fresh broccoli and then just with spaghetti. And again, it really doesn't take much longer to cook than the spaghetti takes.   Jack McNulty (00:51:10): That's right.   Geoff Allix (00:51:10): And that's a quick and easy meal. So a third point, I personally find the effort from an OMS standpoint is the chopping. So because of cooking more with fresh ingredients, there's more chopping involved. And a lot of chopping, I start to find my hands get really tired.   Geoff Allix (00:51:30): And so there's two things I like to do. One is to do that at lunchtime and put it in the fridge. So I've got my chopped stuff already to go. And the second thing is there's these things, I don't know what the proper term with it, we call it a [choppy-chop 00:51:45], but I know that's not his proper term. It's, it's a cylindrical sort of device with blades inside it, which has a pull cord, which causes the blades inside to spin very quickly. And it's very easy to use it to chop up things like onions. It's not something where you really want to get that precise, or I need these things to be an inch long, that's not going to do that. It's going to finely chop wherever you put in. It works very well with onions, works very well for mushrooms. So anything that takes a lot of chopping, you can reduce the effort with devices.   Jack McNulty (00:52:17): That's right. I mean, in any soup or stew or even a pasta sauce or something, you're always going to be starting with something, I'll use the Italian term, like a sofrito, which is basically carrots, onion, celery, and needs to be chopped up. There's no rule that says you have to use a knife. I mean, you can chuck it all into a food processor and just pulse it a few times and chop it up a little bit, that's perfectly okay and that's going to work great. And it'll take literally seconds to make that as opposed to working on your knife skills.   Geoff Allix (00:53:02): Although I would say from that-   Jack McNulty (00:53:03): I've got nothing against that-   Geoff Allix (00:53:05): No, my brother was a chef. And so I would say he bought us a set of proper chef's knives as a wedding present. And I would say a high-quality knife that's kept sharp is so much better and so much easier to use. Yes, you can cut yourself, but yeah.   Jack McNulty (00:53:24): It's much safer. I have high-quality Japanese knives that are just razor sharp. The test that we always like to do is holding up a piece of paper in front of you and just actually slicing it without any effort.   Geoff Allix (00:53:37): Yeah.   Jack McNulty (00:53:37): And goes right through the paper, which is great because it requires no effort to cut anything.   Geoff Allix (00:53:43): And another question you've mentioned Bolognese, so Nicola from Canterbury in the UK has a question about Bolognese. She wants your best advice for a good ragu. She uses red, green and brown lentils, but I suggest finely chopped mushrooms or crumble tofu. What are your thoughts on that?   Jack McNulty (00:54:02): My thoughts are it sounds good, what time is dinner? It doesn't need to be much more than that. I think that sounds fantastic. So a real true Bolognese is basically going to be the classic Bolognese, is going to be carrots, onions, garlic, celery, all sweated a little bit, by sweating that means basically just in a pan over relatively low heat and just stewing in their own juices until they get soft. So the traditional one then will have chunks of meat, not ground beef or ground meat, it'll have chunks of meat. And then it's cooked in a meat broth. And it's basically at the end, sometimes it's finished with a little bit of butter or cream, but also that's an optional thing. What people find fascinating, a true Bolognese actually doesn't have tomato in it.   Geoff Allix (00:54:55): I was going to say you didn't mention that.   Jack McNulty (00:54:56): Yeah. A true one doesn't have tomato in it. If you go to Bologna and you're in Italy now I recognize most of the world doesn't know that. And most of the world thinks that a Bolognese or a ragu has tomato in it, which is fine you can do that. It's just a different kind of sauce, but that's fine. You can use the same sort of technique. So instead of meat, in this particular case, you do these vegetables, but then you can work in some of the things that we talked about, the jackfruit, lentils, mushrooms, okara, soya curls, if you want to, those sorts of things, what I would suggest is cooking that protein element separate and introducing a good amount of these umami type flavors we discussed earlier into those elements. Once they're cooked, then putting them into the sauce and just finishing it.   Jack McNulty (00:55:51): I think that that gives you a better overall finish than if you tried to cook it all together and add soya sauce into the tomato-based sauce. It just doesn't come out the same. I think you can control the flavors much more if you cook that element separately and then work it into the sauce. And make a big portion because you can freeze it or can it later.   Geoff Allix (00:56:15): So finally, I know you've been a vegan for a long while. So meat has not been anywhere near your radar, when one makes a health-based or ethical choice to meat, do you think it's a good idea to even find substitutes that taste similar or just leave it behind and explore the world of other delicious options that are nowhere near the same flavor profiles? So do you actually think, ultimately, we shouldn't be looking to replace the meat, we should actually just be looking for a whole range of different delicious foods and not even think about a meat alternative?   Jack McNulty (00:56:54): Yeah, it's an excellent question to ponder, Geoff. There are many approaches I've heard that people take when first starting out on a plant-based diet or within the OMS community, personally I think it could be a mistake to rely too much on the meat replacement options at the outset. I think it's important to understand the role that meat played in your life previously, review maybe some of your favorite recipes from that timeframe and figure out ways to replicate the flavor profile without relying on meat replacers. So that's putting the onus right back onto everybody out there, all our listeners. It's really up to everybody to just say, “I don't really need these meat replacers in my life.” There are plenty of other ingredients that are out there that I can explore. And as long as I learn a few things, how to season something, how to put some additional flavor in, how to change textures, then I can really move a great deal further and I can get beyond some of the meat replacers.   Jack McNulty (00:58:14): I just think and I've seen this so much. I think people tend to take the path of least resistance. And for example, in the vegan baking world, I just get so frustrated when I just look at these recipes that are developed and almost everybody is using just the easiest solution to figure out how to replace butter in a pastry dough, right? And so they turn to coconut fat or they turn to vegan butter, which is essentially just margarine and they just go from there and there are just other ways to do it. And it just requires a little bit more effort to figure that out. And I think the same thing applies in replacing meats. I think it's extremely simple to heat something up that is basically a convenience food, that's not a problem. It may even taste amazing with exactly the same texture as meat. And unfortunately it just doesn't do anything to benefit your health. And for us, I think that should be a primary consideration.   Jack McNulty (00:59:22): But having said that, I also think there's some room for people to just work slowly into transition. I think there's some room out there to utilize some of these ingredients, especially if they're lower in sodium, lower in saturated fat, don't have a lot of binders or emulsifiers. And I think you can use them wisely at specific times, not necessarily even for convenience, but to please other people.   Jack McNulty (00:59:56): Maybe you're having a dinner party, not everybody there is going to be following the same diet as you, but you want to serve something that's going to be generally familiar to most people. And I think that's a good place to begin to think about that, to do it every day, I would recommend staying away from that. I think I mentioned this earlier, it's not a meat replacement diet we're on, it's using strategically some meat replacers that are generally healthy or to use these meat replacers strategically to create meals that are familiar and comforting to other people, but also to ourselves sometimes. And I think that, that's okay as long as it's done minimally and as long as it's done with using ingredients that are not necessarily going to be unhealthy.   Geoff Allix (01:00:56): Okay with that, thank you very much for another illuminating episode, Jack. And I look forward to having you back in the hot seat for more questions on the next episode of Ask Jack, which will premiere on July 6th.   Jack McNulty (01:01:08): Thanks, Geoff. Just a sort in closing, I just encourage people to maybe think about breaking the reliance on commercially prepared and heavily processed foods, as much as possible. In other words, just encourage people to learn how to cook for themselves a little bit more and certainly how to purchase more ingredients. The world is very large and broad when it comes to the options that are available. And I think it just requires just a little bit of effort there.   Jack McNulty (01:01:41): It's also, this whole meat replacement business is a very [fluid 01:01:47] environment right now, there's just billions of dollars being poured into creating new foods in essence. And I think it's worth keeping an eye on for sure, but a wary eye. And I think it's important to not necessarily just jump right back into the same sort of habits that maybe got us into a health situation in the first place, meaning too much reliance on things that are convenient and unhealthy for us.   Geoff Allix (01:02:25): Thanks for listening to this episode of Ask Jack. Please check out this episode's show notes at www.overcomingms.org/podcast, where you'll find all sorts of useful links and bonus information.   Geoff Allix (01:02:36): If you'd like to submit a question for a future episode of Ask Jack, please email us at podcast@overcomingms.org. You can also subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode of any of our podcasts.   Geoff Allix (01:02:52): Ask Jack is kindly supported by grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly eNewsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   Geoff Allix (01:03:38): The Living Well with MS family of podcasts is for the private non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.  

MS Hope: A conversation with Mathew Embry | S4E11

Bio:   Mathew Embry is an internationally recognized documentary filmmaker and advocate for people and families dealing with multiple sclerosis. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS on MS Hope.   Questions:   What are the core principles of the MS Hope approach? How does that align with Overcoming MS? What does a typical Matthew Embry day look like? How often should you exercise? I’ve heard you say, “No cheat days”. Does this apply to exercise? How do you measure progress? What type of exercise is best for people with MS? What about people with mobility problems? What about people with heat issues? More weight or more reps? One last question. For someone newly diagnosed with MS what would be your key piece of advice?   Links:   Learn more about Mathew’s nonprofit organization, MS Hope Check out MS Hope on Facebook Follow Mathew on Twitter Follow Mathew on Instagram Watch MS Hope videos on YouTube Watch Mathew’s documentary, Living Proof   Coming up next:   Tune in on May 4, 2022 for the next new episode of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer Jack McNulty answering food and cooking questions from our community that inform their healthy OMS lifestyle. In this instalment, Jack devours a topic many of us grill-loving folks are hungering to learn more about – meat replacements.   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within about 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E51 Transcript MS Hope: A Conversation with Mathew Embry   Geoff Allix (00:01): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or in whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org, or you can reach out to me directly on Twitter, @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode.   Geoff Allix (01:05): And now let's meet our guest for this episode. Welcome to today's episode of the Living Well with MS podcast. On today's episode, I'm joined by Mathew Embry. Mathew Embry was diagnosed with MS in 1995 and is now living relapse free, which he attributes to lifestyle modification, following recommendations from his father, a research scientist. He created the documentary Living Proof, available worldwide on Amazon Prime, to discuss his life story. He also has the MS Hope website, which includes resources about his recommendations for lifestyle modification. Although there are some differences between the MS Hope approach and OMS, there are many more similarities. So welcome to the Living Well with MS podcast, Mathew Embry.   Mathew Embry (01:51): Thank you for having me on the podcast. I really appreciate it.   Geoff Allix (01:55): And for any of our listeners who aren't aware of who you are, and it is in the show notes about your documentary, Living Proof on Amazon Prime, which I'd definitely recommend. But if they are unaware of you, could you just tell us a little bit about yourself? Where you're from, your life, and MS in your life as well.   Mathew Embry (02:17): Yeah, sure. I mean, again, my name's Mathew. I live in Calgary, in Canada. I'm 46 years old now... Or sorry, 45. I'm turning 46 this year.   Geoff Allix (02:29): It's my birthday next week and I'm 51 next week.   Mathew Embry (02:33): Yeah. And I was diagnosed with MS in 1995, when I was 19. And what I've done is, over the years and over the past decade, I guess, I really tried to share my journey with people all over the world, and how I've implemented science-based nutrition, exercise, and vitamin D and just different strategies to be able to control my MS. And it's been really interesting because my job is, I'm a filmmaker. That's what I do. I'm a director, producer. So I've been able to integrate both my journey with multiple sclerosis and my craft as a filmmaker to be able to share information with people that will hopefully make their lives better.   Geoff Allix (03:21): What's the main name of the approach? MS Hope approach, would you call it? I know you sort of have the name of the diet and you have the…   Mathew Embry (03:30): Yeah. Well, the diet's actually called the Best Bet Diet, and that was created by my father, my dad, Ashton Embry. He is actually Dr. Ashton Embry but he's a research scientist... He's not a medical doctor, he's a research PhD. He created that diet back in 1995. And the diet is... You can find it on MS Hope.com. And MS Hope.com is kind of an outreach website. It's one that we tried, I tried my absolute best to distill the information to make it as easy for people as possible to learn about it and to be able to implement it into their lives.   Geoff Allix (04:09): What would you say are the core principles then of your approach?   Mathew Embry (04:14): The core diet principles are dairy free, gluten free, low saturated fat, low sugar. We don't have beans in the diet either. Eggs are limited. And for sure, we ask people, make sure people get their... If they're allergic to eggs checked, things like that. And lots of vegetables, lean meat, fish, lots of fish, if you can get it. And then we have a whole list of supplements, high dose vitamin D and then regular vigorous exercise is part of the program.   Geoff Allix (04:54): Okay. So I think, yeah, there is a lot of overlap between your, the diet, and the whole MS Hope approach and Overcoming MS, certainly. And I would say to people who are new to these programs, I think those overlaps, and I hope you'd agree... Those overlaps, things like dairy, they're the big hitters, really. Well, exercise is one, you really... And that's a classic thing. My father who had MS, he was told not to exercise. So the approach has drastically changed. I'm trying to think of other things because there's so many overlaps really. And the diet's quite similar, low saturated fat, low process or no processed food. Definitely no dairy. Vitamin D's in both of them. Exercise, both of them. What's your thoughts on smoking? That's one didn't come [crosstalk 00:05:47].   Mathew Embry (05:46): No, no, no, not at all. Smoking's not... A no go.   Geoff Allix (05:48): I kind of assumed that because it's just bad for you, but you don't mention that. Yeah. Overcoming MS, they do say no smoking, straightaway. Definitely. Not just on the fact that it's a really bad idea for everyone, but actually specifically for people with MS. So what does a typical Mathew Embry day look like?   Mathew Embry (06:10): I get asked that question quite a bit and it's... I don't want to come across like it's boring, but it's certainly routine. And I think, yeah. I've got two children, I've got two dogs and I manage a career as well. And for me, I try to... It's very routine. I get up, I have a breakfast that's in line with the Best Bet Diet. And then 90% plus of the time, I exercise right away. And if you get ahold of me and if you want to work with me, you'll often get an email from me saying, "Well, I'll meet you after 10:30 or I'm available after 10:30 in the morning." Because that time for me is work too. It's getting to the gym, it's doing runs. It's getting some activity. And it's a huge part of my process. Just, it's major. And it's somewhat non-negotiable. If I can't get that workout in the morning, sometimes you'll find me on the... Downstairs, on our elliptical trainer at 10 o'clock at night. It's so, such part of the fundamentals of my program.   Geoff Allix (07:14): So it doesn't have to be morning? It's flexible around lifestyle?   Mathew Embry (07:19): It is. And I really try to share with people, if you follow me on social media, things like that, I try to share with people how to do that because it's not easy to be able to find that time. So I try to share tips and strategies that I've learned to be able to make that time daily. And that's about eliminating things in your life, but it's also, to be able to add it. Because that can be really hard for people. And then the remainder of my day is, like most other people, I work. I have to do my job. You know, I have to have my responsibilities with my family, family responsibilities.   Mathew Embry (07:52): I try to make time for prayer and meditation, these mindful pieces. And that can be walking too. But definitely time to be in my own head, and training that mind to control negative thoughts, which is... That is not an easy process.   Geoff Allix (08:10): Yeah. We are recording this a few weeks before it actually goes out, but we're right in the middle of the Ukraine war, really. Which I mean, especially over here, it's very easy to start doom scrolling through news and that's another thing. I mean, it's a core part of OMS. One of the pillars is meditation and mindfulness, which you just touched on there. But I know that's... It's not, again, it's not really mentioned, but would you say that's an important aspect? Whether that be traditional mindfulness or meditation, like audio, or it could be prayer, you mentioned. It could be... I mean, I think walking. Why we say mindfulness rather than meditation I think is, you can be mindfully walking. You can be mindfully riding your bike.   Mathew Embry (09:02): Yeah. I agree.   Geoff Allix (09:03): You don't have to be sitting there with your fingers in the right pose and doing some yoga mantra.   Mathew Embry (09:10): Yeah. I totally agree with you. And I think that those practices are really personal. I don't feel like I should, that I have the right or anything to tell someone how to do that. I just think that there's a lot of ways that you can access that. Well, it's tough because you have to make the time. Right? So once you make the time, then it's about implementing a practice. And I agree with you. Going for a long walk in nature or even just finding that space mentally to be able, just to stop. Try to tune out the negativity, and just... It's training the mind. And that's how I see it. I see it like it's a discipline thing. Diet's discipline. Exercise is discipline. And the mindfulness is being disciplined with what thoughts you're going to entertain and how you're going to learn to control those two streams, almost. Like the good and the bad thoughts coming at us. It seems to be a little uncontrollable.   Geoff Allix (10:01): Yeah. I think it was someone, it might have been Jon Kabat-Zinn or someone like that who said, "If you can't find half an hour for mindfulness every day, you need to find an hour for mindfulness every day." Which I think is a pretty good quote.   Geoff Allix (10:15): So, talking about exercise then. You're sort of saying you exercise every day. I mean, I've seen things where they've said actually... I've looked through loads of exercise programs really just to sort of advise people. I've tried to sort of dip into most of the big ones, whether that be the MS Gym, Gretchen Hawley. You know Gretchen and-   Mathew Embry (10:41): Yeah.   Geoff Allix (10:41): ... Gretchen does a lot of stuff with us, and a lot of those MS specific exercise things, and some of them are very much like, oh, no more than five times a week. Some of them seven, some of them even down to three, I think. But I think you say every day you do some exercise, is that right?   Mathew Embry (11:02): Yeah. Yeah. I do. And again, I'm not an expert or a doctor, so I'm not giving advice for people to do this.   Geoff Allix (11:12): This is the advice of a filmmaker.   Mathew Embry (11:13): I don't want to come across... Yeah. This is what I do. And I think that I share that journey where this is what I do every day. I try my best to exercise every single day. And I think people have posted on my thing, "Oh, you need a rest day," or "You got to give your body a break." And I just don't buy that. I just don't, because there's been too many times in my history and the last 20 years where I've been, let's just say fatigued, where I'm just super tired, and mentally I get some brain fog. If I would've taken a rest day, I would've sat down, but I have gone to the gym or gone for a run and I feel a hundred percent better afterwards. I've like restarted my day. And so I had to learn that in my process, but I mean, there's just too many times that that's happened.   Geoff Allix (11:54): But can you adapt what you do? So, I mean, like... So personally, today I have a weekly session with my, we have this neuroactive thing, which is we have a neurophysio and she does a weekly session with us. It was quite a muscle workout. You know, I was doing a lot of dead lifts and my legs are feeling it definitely. But then tomorrow I would be like, okay, tomorrow's going to be more of a cardio day. I'll probably go on the bike. I'm not going to work the same muscles. I'm going to be looking at... So.   Mathew Embry (12:32): Sure. Yeah. That makes sense.   Geoff Allix (12:34): Does that work? Is it like, okay, well, if I've done a lot of cardio today, I could do a lot of strength tomorrow or swimming or something different?   Mathew Embry (12:46): Well, yeah. I mean, again, I'm not an expert in this, but one thing I have learned over the years is I just kind of listen to my body. And my body will give me cues for what it almost wants to do. And I just kind of listen. I'm like, all right, you want to do this today? Let's go do this. So people post, "Can you set up a regimented workout plan?" I'm like, "Well, I can't really, because I don't really know what I'm going to do."   Mathew Embry (13:04): I know I'm going to the gym. I know I'm going out to nature, but once I get there, I kind of change it up. And that's also part of my process that I share. Sometimes that changing it up is an internal dialogue that's happening while I'm doing it. And I think that's another part of the process. Where, I get to the gym, I'm only going to be here for 20 minutes, but then 15 minutes in, I'm renegotiating with myself to go a little bit further.   Geoff Allix (13:30): Yeah.   Mathew Embry (13:32): And if I'm too structured, then I find, I can't have that same, listening to what the body wants. But I wouldn't overdo anything if that makes sense.   Geoff Allix (13:42): Yeah. So you're not going to injure yourself.   Mathew Embry (13:44): No.   Geoff Allix (13:45): Yeah. There was an interesting... A guy in the UK, Scotland, I think, called Graeme Obree, who was a cyclist. And he had the one-hour record for a while and he was quite an in interesting character because he made his own bikes. And they made really weird, structured bikes and they ended up banning all of those because you have to use a normal bike eventually. But one of the things he said was that he would go out, he'd get fully in his cycling gear and he'd go out, get on his bike and be on the road before he'd allow himself to say that he ate too much to go cycling. He'd go through all the prep. So you wouldn't have that excuse of... He'd be there, he'd be on his bike and then say, "No, my legs are really sore. I really shouldn't be doing it, and I'll get off." But he had to make himself, even if he knew he was [crosstalk 00:14:31].   Mathew Embry (14:30): I understand.   Geoff Allix (14:31): And I thought, "Yeah, okay, I get that." You've kind of... And then once you take that first step, you're like, "Yeah, actually it's nice. It's outside and it's yeah." Or make yourself run in the rain. You know? If it's raining, I'm still going to go out running. I'm just... Because once you do it, it's okay. It's all right.   Mathew Embry (14:47): Once you do it. And then the question is that conversation is daily and that's... I also try to share with the people, I've been in this for over 20 years. I still get it. I get it. You know, yesterday morning I woke up and it was minus whatever, here in Canada. I don't want to run outside. But as soon as I get going, then I'm like, let's go.   Geoff Allix (15:04): Yeah. And so one of the things I've seen, sort of hashtags and things, and the saying you have is, "No cheat days." So does that apply? Is that for everything? Or is that for exercise, for diet? What do you mean by... When I see your hashtag, "No cheat days," what does that mean?   Mathew Embry (15:25): Again, this is in response to so many people asking me if I've had a cheat day. That used to be one of the most often asked questions. So I'm like, "Well, no, I don't." And I think that's... The part of this program is the vigilance and the discipline. And I try to really share that with people that there's no kind of off switch here. Let's say when it comes to dairy, there's been recent science that's come out to demonstrate how problematic dairy could possibly be. Well, if you're going to have that once a week, I think that works out to about 15% of your life. You're going to be having dairy. Well, don't expect to be at a hundred percent if 15% of your life you're eating things that are detrimental to you.   Mathew Embry (16:07): So then, well, and if that's your level, if 85% is as high as you want to get, okay, then that's as high as you want to go. But you're only going down from there, in my opinion. So then the question is, okay, with no cheat days, well, every single day is an opportunity to reach and pursue optimal health. And it's up to you. As each choice comes in, each meal you have, each time you exercise, each opportunity you take to be positive and do these types of things, how high you want to take your life?   Geoff Allix (16:35): And how would you measure progress for people? Let's say specifically with exercise, how would you measure someone's progress? Because it's, we're not typical of the general population. I've got MS, you've got MS. So how do you measure your progress with exercise? Because I've come from a background where I ran, I did marathons. I did a lot of sports and stuff and my kids are crazily sporty. So it's all about times, it's all about distances, all about weights. But how do you measure progress now?   Mathew Embry (17:11): For me it's still, it's incremental. And I try to share that with people. I mean, I'm doing things too that are quite, whatever that would mean, at a level where they're competitive, but for me it's still... It's incremental shift. So if someone's struggling with disability, like with disabilities, okay, can you walk to the end of your driveway today? Well then, can you walk to the end of your driveway plus a little bit down the block and get back? And it's like, you've got to be able to find those. And I think your point to make, to find those measurables is really important because how do you know if you're getting better?   Mathew Embry (17:48): I don't know.   Geoff Allix (17:48): Yeah.   Mathew Embry (17:49): And so in someone's journey, maybe it's walking around the block, in one year, is a big thing. Well, that's fantastic. That's the goal. Measure every single day, how you are going to get there. And that's one thing I talked about too, is hard accounting. And that hard accounting is when are you going to, when do you decide to do that? Are you going to do that weekly? Are you going to do that monthly? Where you're just accounting for your time and you're holding yourself accountable for what you've done. So for me, it's a little bit of a blur right now because it's races that I'm going for, I'm trying to achieve. But I'm still trying to figure it out, can I do this? Can I do that? What is this going to take? And then trying to measure how I feel on a... Almost on a daily basis.   Geoff Allix (18:33): Yeah. And I think the smart watch is quite a handy thing to have, because that's the thing I use. I'm like, "Okay, I've got to do as many steps as I did yesterday." Try and just... Because I know, yeah. I'm not going to increase it. If I increased it by a thousand steps every day, then before I knew it that'd be, I'd be running constantly. But if I could just get... Yeah, that's my benchmark. Just like, okay. Just a little bit further. If we could just get a little bit further.   Mathew Embry (18:59): Yeah.   Geoff Allix (19:01): Because yeah, I mean, and we are middle aged men, so ultimately, we're not maybe at our athletic peak. I know I'm not going to hit the physical things that I did before I had MS, and certainly when I was 20, but yeah. But if I'm improving a little bit each time.   Mathew Embry (19:21): Yeah. But you're bringing up a really interesting idea that I've been giving a lot of thought to lately about sports systems. Because you said something interesting. And just what you said. You said, "I'm not at the peak of my life." Well, you're not at the peak of your life in regard to where you were in a certain system. So when you were 25, that may have been peak athleticism for you at... For 25 to say 28-year-olds.   Mathew Embry (19:44): Okay. But at 50 or 45, whatever I am, what's peak athleticism at where I should be?   Geoff Allix (19:50): Yes. That's a very good point. Yeah.   Mathew Embry (19:54): And I think it's about... What I think, where our society globally maybe has gone wrong, is we stop. Once you're through college sports and maybe you played semi-pro or something or whatever the case, then it's just like, "Well, that's as far as you go." And like, that's the peak. Well, for me, I redefine that. Where I'm like, no, no, no. I need to find out where my peak is now at 45, and how am I competing there? Because no one cares what I did yesterday, but people still care what I do today. So am I still at the peak? Or can I... Am I finding the peak of where I should be today?   Geoff Allix (20:27): That's a really good... Yeah. A good way of looking at it, I think for, yeah. Because a lot of people I think, who are not necessarily diagnosed, but certainly coming around to lifestyle modification. A lot of the people I come across are in that age range of certainly thirties, forties, fifties. And so yeah, maybe they shouldn't be judging... And it's very difficult to judge yourself against who you were before. Before I had MS. My balance is a bit shot now. It's like, I'm not going to be doing some of the things I was doing then. So. But yeah, I'm a nearly 51-year-old guy with MS, so I'm doing well for that.   Mathew Embry (21:10): Yeah, exactly.   Geoff Allix (21:11): Yeah.   Mathew Embry (21:12): Yeah. I get it.   Geoff Allix (21:14): And what would you say is the best type of exercise for people with MS?   Mathew Embry (21:19): Well, this is a good question. I mean, I actually met Dr. Jelinek in Australia years ago. It was one of the... Well, one of the peak experiences of my life, probably. He's such a hero to me and we were able to talk and he said something that really stuck with me. He said the two words, "Vigorous exercise." And I was like, that's it. That's exactly it. That's what I've been doing. It's vigorous. And it's getting the blood flow and it's... So the question becomes, okay, well then it doesn't really matter what you do as long as it's vigorous. As long as you're getting the blood flowing and you're getting that, the prosody out of the brain, whether that be the blood, or I don't know how the lymph system works, but all those types of things are just kind of flow. Like the blood flow. So that's where I share with people. And I do Q and A's, I'm like, "I don't care what you do. Just do something."   Geoff Allix (22:14): But you're actually... So when you say that blood flow, you're getting out of breath, you're getting like-   Mathew Embry (22:19): Yeah, I'm getting out of breath, I'm sweating, I'm turning red.   Geoff Allix (22:25): Yeah.   Mathew Embry (22:25): You know, I'm doing all those things. And that's what I remember Dr. Jelinek said that he did too. It made total sense to me. I'm like, that's so... That's what I've been doing as well.   Geoff Allix (22:32): He also lives near to an outdoor swimming pool, which I'm really jealous of, but.   Mathew Embry (22:36): Yeah, right.   Geoff Allix (22:37): Yeah. If I had a 50-meter outdoor swimming pool and lived in a country which was warm enough to use it every day, that'd be fantastic. So, yeah. So I think that's a key point there. So you, so it's really that sort of getting out of breath, not just like doing bicep curls and getting big guns, is not necessarily going to do everything for your health in that respect then.   Mathew Embry (23:06): I don't know. I can't necessarily speak to that because I didn't, that's not what I've done. It's been 26 years now of vigorous exercise. And whether that's running, swimming, sports, all sorts of different things. And I think that blood flow component has been major for me. And I think if you are lifting weights and you're doing that thing and you are getting the blood flow, then maybe that does it too. But I don't, I just don't know. I've also looked online and seen like apparatus that they're creating to create that type of blood flow for people who maybe can't stand up. They pump the legs and they pump the arms, they just... To get that blood flowing. And I'm really interested in that for people. And I just think that blood flow and that circulation is just so important for good health.   Geoff Allix (23:53): So that comes on to the point I was going to make. People with mobility problems. So what would you suggest if someone's, maybe they're in a wheelchair, maybe they're bed bound, can they still do exercise in that way?   Mathew Embry (24:09): That's a tough question. I mean, I think that's where experts like Dr. Gretchen Hawley come in, where they can offer people solutions to that. And then again, I also look at these other apparatuses or these medical devices. Can these be... I don't know if they're helpful, but I think we should look at them. And if they are creating additional blood flow for people who are immobile, then that seems really important. But the one thing I do share over and over too is just, do what you can, whatever stage you're in. Just from my perspective, you got to keep moving.   Geoff Allix (24:46): Yeah. There was, I can't remember. It was one of the MS exercise specialists was just showing that people could do essentially running in a chair. Doing the upper body bit of running, you can get really out of breath. And there's a guy I interviewed, Marc Webb, who... He plays wheelchair rugby.   Mathew Embry (25:05): Right. Wow.   Geoff Allix (25:05): And I think, yeah, that, I mean... Yeah, he's not got the balance and everything to use, for his legs, but that looks like a pretty full-on workout. And it mentioned something else that I've seen you bring up as well about team sports. So what do you think the benefit of team sports is?   Mathew Embry (25:25): Again, that's a complicated question. I think that there's... Like for team sports, I think they're, it's so important to learn how to get along with people. You know, that's one thing for sure. The other aspect is I think it also holds you accountable. And I think that's also important in this journey. You know, the accountability mirror for me is literally looking at myself, but I also... Just because I've gone public, I'm now accountable to all these people.   Geoff Allix (25:56): Yeah.   Mathew Embry (25:56): So, if I say, "No cheat days," well, I better live it. And if I haven't worked out, whatever the case, I have a sense of accountability. And then also too, I think for people... I mean the one thing with people I worry about sometimes with MS is they may feel, "Because I have MS I can't participate at a certain level." And that's where I think a team sport could be really important. Where, you go swim with people who don't have MS, or don't talk about this type of stuff. Well, that's good too. I think that's all really great to integrate it, to be able to integrate into other populations and not feel less than, or those types of things that I think something people can struggle with. Maybe I have at times wondered, you know.   Mathew Embry (26:40): Actually, that's not true. I've always been pretty, "I have MS, I'm coming for you."   Geoff Allix (26:46): And how about if people have heat issues? Do you have anything to deal with that side of things? Because I mean, I think it goes both ways actually as well. Because I mean, I have heat issues and I don't deal with heat well, like high temperatures well, since I've had MS. But I've been snowboarding a few times with MS, and I just, I go snowboarding now. I don't have a whole load of thermal stuff on. Really quite limited amount, compared to what I used to have, when I was younger. Because when it's cold, I'm great. But when it's hot, much less so.   Mathew Embry (27:20): Interesting. Yeah. Interesting.   Geoff Allix (27:23): [crosstalk 00:27:23] The other way around, where they go, "Oh I know, heat's great. I'm fine with heat, but no to cold. I'm terrible."   Mathew Embry (27:27): Yeah. I'm that. I'm that person. [crosstalk 00:27:30].   Geoff Allix (27:29): You live in the wrong place.   Mathew Embry (27:32): Even before doing this interview, I had to get a sweater because I'm like, I'm going to get cold here. I've had to find ways to stay warm. And I think that's... It's no different than with the cooling. And it's interesting you bring it up because someone just wrote me, they're going to send me a cooling vest. And for me, I don't really, I don't necessarily need it, but I'm like, "Okay, great." And I actually thought, "Maybe I'll go on social media and see who needs it?" And then I'll give it away and then see how they do. Like if they write me back and say, "This has been fantastic, maybe I'll send it to you."   Mathew Embry (28:00): Like, if this has really helped me, then go for it. It's about finding environments that you're able to do it. Like you said, in the snow, that sounds great. And it's about finding the gear. I mean, if you see me at the gym, I come in with a tank. I have another layer on. I wear these types of wool shirts to the gym because I know I've got to be able to heat up. And once I can heat up, then I'm good to go. But getting there is challenging for me, but you can put me in a sauna for a long time.   Geoff Allix (28:33): Oh I see that. Yeah. I mean, it is funny, isn't it? I don't know if there's much research we've done on this because it does seem to affect everyone with MS, one way or the other. But I've literally, I've been in the sauna once since I've been diagnosed with MS.   Mathew Embry (28:48): Really?   Geoff Allix (28:49): And that was at Glastonbury Festival. Glastonbury's not so far from me so I go quite a lot and there's a sauna there and you can... It's a place where you can get a shower, which is an important thing at Glastonbury Festival. But it was terrible. I literally, I thought I'm not going to get out of here. This is so... It was like, I just couldn't walk.   Mathew Embry (29:15): Wow.   Geoff Allix (29:15): Really. And then I basically laid down on the grass for about half an hour because I was just in terrible state. But yeah. I just, yeah. Be interesting if there's some research done. I'm sure there... Maybe there is. But just avoid it, basically, is what you're saying. You want to go for warm? I'll go for cold.   Mathew Embry (29:30): Yeah.   Geoff Allix (29:31): [crosstalk 00:29:31] look at each other. So I look through your outside window, I can see there in front of the... Nice and cold outside.   Mathew Embry (29:36): Yeah. It's cold.   Geoff Allix (29:39): The way you looked at that was with worry. I'd look at that as, yeah, I quite fancy [inaudible 00:29:45]. So one more exercise question. More weight or more reps, would you say is good for you with exercise?   Mathew Embry (29:55): Again, this is from a personal experience, I'm a rep kind of person. For me, it's all about reps. I got weights downstairs, nothing more than 25 pounds. That's been part of my process. Again, I'm not an expert in this, so maybe there's someone who knows more, but my process has been endurance running, low weight, high reps. And that's been over 25 years now.   Geoff Allix (30:26): I was thinking this today because I was doing some reasonable weight for me, now, but I'm kind of still going with what I did when I was younger, which was, let's start out with three sets of eight. Then you do three sets of 10. Then you do three sets of 12. Once you can do three sets of 12, you go up a weight, you go back to three sets of eight.   Mathew Embry (30:49): Yeah, I remember that. Yeah.   Geoff Allix (30:52): And I was doing that today and I thought, "I don't know if this is the best way of doing it." I don't know whether I should be [inaudible 00:30:58]. Why am I stopping at 12? I've seen some exercise stuff with you and you seem to be actually almost like you're not really doing reps. You're like, "Actually no, I'm going to do a lower weight and I'm just going to keep doing it for a lot longer."   Mathew Embry (31:14): Keep doing it. Yeah. For a lot longer. And I don't use things like weight benches and that type of stuff. I try to do a lot of balance as well. If I'm doing weights, I'm lifting my legs at the same time and trying to figure out, not like jumping jacks, but always moving.   Geoff Allix (31:30): Yeah.   Mathew Embry (31:31): That kind of thing. So I don't really use those traditional machines either that much.   Geoff Allix (31:36): And that's-   Mathew Embry (31:39): I see it like a... I have a really paleolithic kind of perspective of my body. So I just think, "What would a cave person do?" You know, they'd lift a rock and they'd... What would they need to do?   Geoff Allix (31:55): And that applies to so many things as well. Vitamin D. We would've lived somewhere sunny and we might have worn a rabbit pelt round our waist or something. Yeah.   Mathew Embry (32:07): Sure.   Geoff Allix (32:07): We'd have got loads of vitamin D. We wouldn't have had dairy because we didn't have a farm full of cows, let alone cheese. We just ate what we could find. And we did loads of exercise. We got loads of vitamin D. We ate natural food that we could forage and find. And basically, we're almost saying, I mean, I don't... This paleo is sort of like almost tagline now, isn't it? And that's not necessarily... Sometimes you think, "Really? They actually eat that?" Like Bulletproof coffees and things, but yeah, if you sort of think, yeah, it does make sense. A lot of that stuff, that's kind of how we're made, isn't it?   Geoff Allix (32:50): It's really interesting to speak to you. I think there's a lot of stuff. There's certainly... I mean, I don't like this idea of Overcoming MS or MS Hope being in competition because I've certainly heard that sort of thing in the past. I just think we need to look at the overlaps between all these things, and there's so many similarities. And in fact, the more I speak to you, some of the things which may be that are not necessarily highlighted by your website, like, "Yeah, don't smoke. Do something mindful."   Geoff Allix (33:15): And all those things like vitamin D, we mentioned, exercise, whole food diet is... I just think, yeah. For everyone really. So could I ask you one last question though? Something we often ask people. If someone's newly diagnosed with MS, what would be your key, best piece of advice to them?   Mathew Embry (33:41): Change their diet right now.   Geoff Allix (33:43): And go-   Mathew Embry (33:45): ... Right now.   Geoff Allix (33:45): Full on? Like you have to do it a hundred percent?   Mathew Embry (33:49): Yeah.   Geoff Allix (33:49): Yeah.   Mathew Embry (33:50): Yeah. Because I think that it's... I mean, I don't want to get too kind of out there, but illness is... For me, now I've had this over 25 years. Okay? So I have a very different maybe perspective now. I almost see sometimes, not all the time, but sometimes illness can be a call to adventure and it can be... It can change your whole journey. For you to go, "Okay, here I am today. And here's where I want to go, to opt towards optimal health." Well, going towards optimal health is going to... You're going to have to transform your life radically. Because your life to that point, got you there. "Okay. Got it. Now, what do I have to change to not have this outcome, which is illness or disease?" The key component to that, one of the keys, is nutrition. And that is very hard to shift. It's very hard to change.   Geoff Allix (34:45): And one of the things that George [inaudible 00:34:49] says, it's like turning around an oil tanker as well. So yeah, it's not a quick fix. You're going to have to... And like you're saying, start day one. Because if you don't start turning the oil tanker, it's not going to turn. It's going to take a long time to turn it around. You need to turn, keep it going in another direction is a difficult thing.   Mathew Embry (35:06): Yeah. And then I think that... but it can start right now. If you're listening to this podcast, you can go to your fridge and change. And that's where I try to tell people, "It's you. You have the power to have incredible transformation in your life right now. You just need to decide." And then I also tell people too, "Find the outcomes you're looking for. Find the people who you look at and you think, hey, that's what I want to be." And then go learn what they did. You know? And the thing is people who normally succeed in something, they want to tell you all about it because they've enjoyed it, and they enjoy where they are. And so they... Why would you not want to share it? And so you're in luck. Not only can you find the person you want to aspire to, that person's very likely going to want to help you get there.   Geoff Allix (35:57): Okay. With that, thank you very much, Mat Embry, and I'd encourage everyone to have a look. The links are all on the show notes. Mathew is... I call you Mat again. Sorry. I keep saying-   Mathew Embry (36:08): That's okay.   Geoff Allix (36:09): I want to call you Mat. So Mathew's all over social media. You'll find links to all his different social media outlets, but yeah. Check out the MS Hope website as well.   Mathew Embry (36:19): All right. Thank you very much.   Geoff Allix (36:27): Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.   Geoff Allix (36:55): Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   Geoff Allix (37:38): The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

Coffee Break with community member Tessa Jane Miles | S4E10

Welcome to Living Well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles as our guest!   Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.   As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org. Tessa Jane will paint your day in colors galore discussing how she uses art to raise awareness about MS. We hope you enjoy this episode’s conversation with her, coming to you straight from Devon in the UK.   Tessa Jane’s Bio (in her own words):   My name is Tessa Jane, and I am an artist. My best days are the ones when I forget I have MS. My body tingles with the joy nature bestows – the birdsong, the warm light, or fresh wind on my face. I have an inner glow of happiness and capturing that and applying it to paper, cloth, or any surface continues that delight, taking me to a world of imagination and beauty. It’s a release. I don’t focus on fear or anxiety.    My body is clear of pain, words trip off my tongue elegantly. I can balance and am full of energy. I have clear, present thoughts which spur me on, and I am happy. The only trembling or shaking is because of excitement and laughter. My body is light, and spirit lifted.    Following the Overcoming Multiple Sclerosis (OMS) program has brought me more of these days. Learning to be mindful, present, and to meditate has reduced stress and lightened a heavy heart. I do not sit cross-legged, humming. I walk amongst trees, or around my garden. I float in water, or I draw and create. Gardening, writing, sewing, and knitting are all mindful activities which help to reduce stress and lower life’s adrenaline. I watch and listen to birds, taste my food, and listen to the rhythms of the day.    I look for small joys on the bad days. A steaming coffee cup. The light on a golden leaf. Or frost patterns on a car roof. A warm fire or a bowl of tasty soup.   Being part of OMS and belonging to an OMS Circle is a comfort blanket. They have become my family and will help shoulder the weight, give good advice, and make me laugh about the detritus that living with multiple sclerosis brings. My walks, creativity, and time in nature is my mindfulness. I’d like to encourage you to find your ways of being present. I’ve pledged to raise £10,000 for 10 years. I can’t do it alone but can with help and support from friends and family. Not all of us can run, but many can write, whittle, knit, sew, crochet, or paint. Join my 10 for 10 campaign and get in touch to find out how (see links below).   Questions:   Tessa Jane, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. You and I are neighbors in Devon, and part of the same OMS Circle, so a very special welcome indeed! Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? How do you feel the OMS program connects with people of varying abilities? For example, how might someone who faces more physical challenges relate to the program? Can you share any insights from obstacles you may have faced in adopting the OMS program, how you overcame them, and how this experience might help others? Let’s shift gears a little bit and talk about your art. Can you tell us a little bit about your background as an artist, and your relationship to art? You’re a big proponent of using art to raise awareness about MS, and moreover people with MS using creativity as one of the tools to boost mindfulness and manage their condition and their health. Can you share a bit about how you see that working? Putting that theory to work, you’re involved in a very special event happening in May, I believe – the Delamore Arts exhibition. Overcoming MS is a charity partner for this event as well. Can you share what this is all about, and how it represents your philosophy about art as healing in practice? Going a bit deeper into the creative rabbit hole, I understand you’re quite interested in brain scan-based AR. That sounds futuristic! What is that all about and how does it relate to your linked interests in art and MS? Tessa Jane, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?   Tessa Jane’s Links:   Check out Tessa Jane on Instagram here and here, all about raising MS awareness through art. You can follow Tessa Jane on Twitter here. Have a look at Tessa Jane’s art on Facebook here and here. Learn more about Delamore Arts.   Coming up on our next episode:   On the next episode of Living Well with MS, premiering April 27, 2022, please join us for a very special conversation with Mathew Embry, an internationally recognized documentary filmmaker and advocate for people and families dealing with MS. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS through MS Hope. You won’t want to miss this inspirational interview!   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E50b Transcript Coffee Break #30 with Tessa Jane Miles   Geoff Allix (00:01): Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our diverse and global Overcoming MS community.   Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.   You can check out our show notes for more information and useful links. You can find these on our website, at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast.   Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So, get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break.   Welcome to Living well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles as our guest. As always, your comments and suggestions are welcome, by emailing podcast@overcomingms.org. Tessa Jane will paint your day in colors galore, discussing how she uses art to raise awareness about MS. We hope you enjoy this episode's conversation with her, coming to you straight from Devon in the UK.   Tessa, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program. The purpose of this series, to explain, is to get to know some of the diverse members of the community from around the world and today, you are in the hot seat.   You're effectively neighbors with me, because I'm in North Devon in the UK and you're in South Devon. We're part of the same broader Southwest UK OMS circle. So, a very special welcome from the Southwest of the UK. Could you tell us a bit about your day-to-day life?   Tessa Jane Miles (02:11): Hi, Geoff, thank you. Yeah, hotspot. Well, I'm sat here with my coffee and my day-to-day life has changed slightly with the new addition of a dog. I tend to get up and take him out, which I'm finding quite exhausting, because I'll often have a slow start. I find that if I get up when I wake and my body is ready, I have a better day than if I try to force things.   So, I've been falling asleep in the afternoons and evenings, much to my husband Adrian's amusement. I don't get to see the end of any program because I'm asleep before it happens. I try not to have fixed days, but that's kind of the key thing. It usually revolves around art or my garden or being outside.   Geoff Allix (03:03): About MS, when were you diagnosed with MS and how was that?   Tessa Jane Miles (03:10): Oh, it was really terrifying actually. I'd separated from my previous husband and I was on my own with the girls. We'd had an amazing time getting ourselves resettled and then suddenly, I started to have problems with my sight and it was deteriorating.   It reminds me of The Matrix with Keanu Reeves, where it all started to pixelate and do strange things. By November 2008, I wasn't safe to drive. I couldn't see properly and I ended up having to stop teaching, because I wasn't safe in the classroom.   I'd been to Royal Eye Infirmary and they’d said, "Well, there's three possibilities. There's a brain tumor, you could have an infection which we can't treat or it might be multiple sclerosis." I'm thinking, "I don't really want any of them, thanks. Is there not a fourth option?"   So, I went through a very difficult six months, which I know now, from experience, I was lucky. Because many people are what we call no man's land, in that they've had one relapse or they've had one sclerosis and you are called CIS or it's just one incident, but then it happened again in April 2009.   Then, I got the full diagnosis and I'd learned that it was optical neuritis. There was nothing wrong with my eyes. Started to learn and understand what was happening with MS. Life changed dramatically. I stopped teaching and I found myself alone and scared and bored, with no focus.   I was playing Farmville and my sleeping hours were all over the place. I was harvesting my crops at two o'clock in the morning because I couldn't sleep. It was all pretty rubbish, to be honest. I didn't really know who to turn to or who to talk about it with. So, yeah.   Geoff Allix (05:37): I think there is, because we live in the same county, I mean, I've felt that there really aren’t people around, are there? We live in quite a rural county. I mean, the OMS Circle has meant that I've met people. Until the OMS Circle, I hadn't met anyone with MS. They're few and far between, just geographically. Yeah, you don't really feel connected, do you?   Tessa Jane Miles (06:10): No, and people have very different ideas of what MS is. I mean, I'd come out of one relationship and I met Adrian. How do you explain to somebody that you've got MS? I can remember someone saying, "Well, yeah. If you were married, you'd just get on with it. But who might want to commit to somebody who, do they need all that? What's their experience of it?" Yeah, it was tough.   I liked to dance. I was doing salsa dancing and I found that that helped keep me fit. I had quite a good diet before, but I didn't know anything about it really. I'm an artist and a designer and I make fabrics. One of my real joys is to take something that's been discarded and make it precious again. Which is a bit of a metaphor, really, for myself, in that I felt discarded.   Whereas OMS has helped me to feel precious again, but we'll come to that a bit more later. But the important link is that I needed to make was buttons. I went to meet an upholsterer who had a machine to do them. His name is Bruce, Bruce Jacks, and he's in our OMS Circle.   He's not fully OMS, but he values being able to feel connected, which is something else that we are aware of as ambassadors. That there is a degree of difference between purists and people trying to build up or trying to find a balance that they're comfortable with.   Then suddenly, he just blurted out about having MS and I was gobsmacked. He said, "Oh, I haven't told you that before, have I?" I said, "Well, no. I'm gobsmacked because I have it too." It created a bond instantly, and this is something else that we find on our Circles.   That, because you have this commonality and you have this understanding, this innate understanding of what it is like to have MS, that you don't have to explain that, because we all get it. That's really, really important. But it was him that took me to The Merlin Center at St. Austell, which is one of the specialist centers we have in Devon and the Southwest. I met Jeremy Hobart, or he was Dr. Hobart then, and I learned about the OMS program. I met Colin Bannon and he said, "Well, we've got a group in Plymouth. You can come." But also, very importantly, this lovely lady stood up holding the book, saying how she couldn't walk and now she was walking with sticks. How it had changed her life. Her name was Angela and she's also in our Circle. So, it's kind of drawn all these threads together and tied knots and helped…   Geoff Allix (09:19): What was the key thing that tipped you into thinking, "I'm going to follow this program"? Because I mean, there's some doctors fully supporting of it. But generally, there's a, "Well, yeah, healthy diet's good for you." But, full-on support of OMS is unusual, to say the least.   Tessa Jane Miles (09:46): Yeah, it is, isn't it? I just thought it was a no brainer, in that it's good for you. There's nothing in it that suggests that it would be bad for you in any way, shape, or form. It's a lifestyle choice, it's not a quick fad thing that's going to fix you. You do it and you're on it and that's for life.   Yeah, I just thought, "I'm not going to lose out here. It could help me." The scientific evidence was obviously incredibly important because it felt like that there was real substance behind it. As I say to anybody that asks me about it, I say, "Well, it's not hard to give up something which might mean that you have a better life. Longevity, physicality, mental, all of it."   I was really struggling with fatigue and energy and strength. I thought, "Well, if this helps those things alone, that's going to be good." So, I had a big last supper. I had my roast chicken and my potatoes and everything that, at the time, I thought I wouldn't be able to have. But, as you get better with the diet, you learn ways around it.   Yeah, and then I started, cold turkey. Within the first week, I was in tears, missing so many things. Had the wrong attitude in my head about what I could have. I didn't chuck everything out. One of the things that the book suggests is you chuck everything out that's not OMS friendly. I couldn't afford to do that, it wasn't practical. So, we've sort of used things up a bit, but overall, I embraced it.   Geoff Allix (11:45): We are actually quite lucky, in that we do have a neurologist in Devon. Professor Hobart actually does give out the Overcoming MS books.   Tessa Jane Miles (11:54): Yeah.   Geoff Allix (11:54): So, there are some neurologists out there who are very, very positive for that. I mean, he's not my neurologist, but I'm very aware that he's very pro Overcoming MS. This may be somewhat ageist, which I shouldn't say as someone in their fifties, but the older neurologists might be more set in their ways sometimes. [inaudible 00:12:16] that a newer generation is coming through that's accepting of lifestyle factors. They seem to get more and more press these days.   Tessa Jane Miles (12:25): Yeah, and I think also that they're beginning to realize that the medical profession as a whole is far more positive about holistic medicine and combined medicine. At no point do they ever say, "Don't have your meds." It's a combination of things and that's very powerful too.   Although obviously, we've got examples of people who've been able to give up their meds. Because they've been on it long enough and they feel that they've got control of it and they are living a very different life. I know, probably six years now I've been doing OMS, that I am stronger. I am fitter. My fatigue is improved. I mean, we all have bad days, don't get me wrong. There are days when I don't want to step out the door and can't face the world, because I feel that you tend to put up this facade. People will say, "Oh, how are you?" I once stupidly told them exactly how I was. I watched their face completely go blank and drain of color.   I thought, "Ah, right. This is one of those British things." Like you say about the weather, "Oh, weather's good, isn't it?" "Oh, I'm fine." We've got a bit of a joke in our family that fine means Freaked out, Insecure, Nervous and Emotional. It comes from The Italian Job, with the Minis. She'll say, "I'm fine." I'm thinking, "Yeah, I am fine." And that…   Geoff Allix (13:52): Yeah. For people who are not from the UK, probably the most common greeting is, "How are you?" It's almost not intended as a question.   Tessa Jane Miles (14:02): No, they don't actually want to know how you are.   Geoff Allix (14:06): Yeah, it's just a greeting. It's just almost like saying hello. Yeah, you're constantly being asked that. I always think that "Are you actually asking how I am or are you just saying that?" Because sometimes they are asking how you are, because you say, "Oh, yeah." Or just not even really answer it and they go, "No, but, how are you?" [inaudible 00:14:23]   Tessa Jane Miles (14:24): Sometimes I'll say to people, "Is that a real how am I, or do you just want to check that I'm okay?" Then, some of my closer friends will say, "How are you? No, really, how are you?" Then it can become a more involved conversation, but it's not very often that happens. It's usually, "Yeah, I'm fine."   Geoff Allix (14:43): One thing I wanted to ask is how you feel the OMS program connects with people with differing abilities. For example, how might someone who has more of a physical challenge relate to the OMS program? They maybe have difficulty walking, for example.   Tessa Jane Miles (15:01): Well, this is my big project, my big thing at the moment. I realized, through listening to Alison Potts, and mindfulness, it's the thing that, after the diet, I found the most difficult to do. So, I've really been focusing on mindful activities and I'm aware that, or I feel that people with more physical disabilities could feel more on the outside.   As we see lots of things about being strong, MS fighter. Anything on social media, it's about, "Oh, I've done this and I'm beating that." I've watched various TED Talks and I'm focused much more on mindfulness and understanding the power of that.   I'm just doing an amazing painting course with an artist at the moment and it's so mindful and it's so meditative. Today, we were doing taste and color, so it's something that's very, very important to me, that we are all inclusive. Whatever your ability and however physically or mentally taxed you are, I feel OMS can help.   I've talked to people who can't run, who struggle with walking and they feel better. So, I'm trying to raise money for OMS. I've set myself a 10 for 10 project and I'm in inviting anybody to join me with this this year. We've got a 10 for 10 JustGiving page.   If you knit, if you sew, if you whittle, as we have Sean in our group who whittles spoons, beautiful they are. That you can find your way of doing 10, your fantastic beach rides on your trike, let's do 10 laps, or maybe you can swim better than you can run if your weight is taken off you, then do 10 minutes. We can all set ourselves goals that can be positive and enhancing, but they're real. They're smart, as I would say, SMART targets. Small, Measurable, Achievable, Realistic Targets. I really feel that you can find part of the OMS program that is most comfortable with you.   You'll know, Geoff, I've had a lot of problems with my feet and actually, walking is incredibly difficult. So, I've now got an electric bike and I can cycle better. There are ways around it. I would encourage anybody who's struggling to contact anybody. Contact us, contact OMS. Find their own Circle because it could be you do 10 stitches.   I certainly find, in the winter when I'm lower, that if I'm sitting and sewing and doing little things like that, that it keeps me active. It keeps my fine motor skills going. So, I think there is an answer to everyone's challenges. My pet project is to try and help those people find their way through.   Geoff Allix (18:26): Could you tell us about areas where you might have had problems adopting OMS? Did it all go smoothly or were there bits that were hard to adopt?   Tessa Jane Miles (18:36): Well, definitely the diet challenged me for the first couple of months, in that I was a meat eater. My passion for cheese, I still struggle. Sometimes I have to pass that block of cheese over, say, "You grate it, because I will just devour it if you leave it under my nose." Yes, there are areas that are difficult. I've lost the thread because of my good old MS. Ask me the question again.   Geoff Allix (19:03): It was just about [crosstalk 00:19:06] also, I want to apologize to listeners because outside our house, the gas mains are being replaced. So, there's lots of drilling noises that you might be able to hear in the background.   Tessa Jane Miles (19:15): No problem.   Geoff Allix (19:17): Apologies for that. It was just about, yeah, things that you've had trouble adopting in OMS. I mean you mentioned [crosstalk 00:19:23] How did you overcome those diet issues?   Tessa Jane Miles (19:27): Got the book, started looking more carefully at the book. Having met other people and sharing recipes, sharing ideas. It takes me twice as long to shop now, because I'm reading all the labels and because I've got glasses, it takes longer. Practice, basically. Good old, simple practice. That, the more you do it, the easier it gets and the better it is.   By reinforcing things, I can shop now, most of the time, and I know which things I can and can't have. Where I need to go. I've got particular shops that I go to for different things. I absolutely love vegan mayonnaise, which I can only get in Sainsbury's, for example. I've just found some new baked olive oil crisps in Tesco's, which were a bit of a win-win for a naughty treat.   Persevere, talk to others, that's what's got me through. Being part of a family, being part of the OMS Circle and sharing those things has made a huge difference. But also, the mindfulness has been a real problem, and meditating. I have to confess that when I first started to do it, I was asleep within 10 minutes every time.   When I came up to Edinburgh and heard Craig's voice and I had to smile to myself because I thought, "Oh, bless. He's the one that's been sending me them." [inaudible 00:20:54] But, listening to Alison Potts about finding different ways to be mindful, and that we are not designed to sit like Buddhist monks and that has just been brilliant.   That's what I'm actually starting tomorrow. So, today is the last day of February, this podcast won't go out until later, but Mindful March. I'm trying to show different ways of meditating. When you go out, find 10 things. If you can't walk, then, like our dear Angela does, goes out in her little motor scooter. Listen for 10 birds. Listen and you'll be in the moment, you'll be present.   This painting course that I've just been doing, again, it's about how you apply the paint and being mindful of the direction. Today, we ate fruit. Well, I ate fruit, somebody else had chocolate and I was like, "No, don't go there Tess." Yeah, just being much more alive, now, in the moment. But it's taken me a long time to start to get this. It's about repetition, about practice.   Geoff Allix (22:14): You mentioned art there. Could you tell us a bit about your background as an artist and relationship to art?   Tessa Jane Miles (22:22): It's the thing that really keeps me going, to be honest. I trained as a fine art textiler, I trained as a weaver and a craftsperson. I ended up teaching because of my family and children, but I've always done my own work and continued to do my own work.   Then, through teaching and through studies, I realized that it wasn't enough to just make work that looks nice. It had to have an underlying meaning, a story. It had to have a conceptual element to it. There was a lovely quote today where it said, "You just end up pushing pretty paint colors around the page." That's not enough for me.   My work at the moment is about being mindful, it's about what it's like to have MS and to try and get those feelings, those emotions across. But, still in a way that is positive, uplifting, to tell the story. It will be part of this work that I'm doing in May with Delamore Arts. Where they are supporting OMS as their charity. I've got a £10,000 target…   Geoff Allix (23:40): We'll go onto that in a minute, but can I just ask, before we go on to that, about people with MS using creativity. Not, well, art, but broader creative arts as one of the tools to boost mindfulness and manage their MS condition. Could you share a bit about that?   Tessa Jane Miles (24:05): Yeah, absolutely. Basically, you are sitting predominantly. I mean, some people stand when they paint and what have you. But, because you are focusing on what you are doing right now, the marks that you are making on paper or the stitches that you are doing, your breath slows, your mind calms.   You can find that you are in a very meditative state. Even if you're just mixing colors, you are focusing on what's happening right there, right now. So, you are therefore meditating. You are therefore being mindful and you are practicing mindfulness.   I can start with music on, which again, is another way of listening. Listening to music is another mindful thing. It takes you to a different place. It takes you to somewhere outside of your overthinking, your worrying. It will lower those stress levels and it will reduce those things.   Yeah, you can get your knickers in a twist about not being able to do something, but that, again, it comes with practice and getting better. Picasso said, "I practice the things I can't do until I can." That's the key element about mindfulness. Find a way.   As Alison says, "If you are angry, how can you expect to sit calmly?" You need to do something energetic. So, going out for a walk or putting some really loud music on. During COVID, when I was really struggling, I was listening to Music by Humans, Gary Barlow. It was just full of percussion and saxophones and joyful.   It would knock those blues out and help bring back the joy of living. That's what I would recommend. Anything that's creative, writing, music, involved in any of the senses. If you cook and you love to bake, then take time in thinking about those ingredients that you're putting in. The taste and the flavors and the feel of the mixing. Anything that we do in that form.   Geoff Allix (26:24): Back to the Delamore Arts exhibition. You've been instrumental in setting up Overcoming MS being the charity partner for this event in May.   Tessa Jane Miles (26:24): Yeah.   Geoff Allix (26:37): Could you tell us a bit about it and how that connects with your art as healing?   Tessa Jane Miles (26:46): They're celebrating 20 years, we're celebrating 10. So, I pitched to say, "Would you consider us?" And they said yes. The reason I did it was because World MS day is the 30th of May, Delamore Arts runs throughout May. It seemed serendipitous that they be together.   It's about sculptures and a trail in the gardens, which is about being outside. Gardening is another mindful thing. It's about a community, they bring a lot of different people together and that's one of the World MS Day focuses, is community. How being in outside spaces helps calm and heal us. It's about being creative.   I mean, Delamore Arts, there's literally something for everyone. They have so many diverse styles, artists, things coming in. I would challenge anyone who said that they didn't like anything there, because there's crazy things to really profound things. To really beautiful landscapes, to portraits. There's literally something for everyone.   I just thought, "How perfect is this match? It's ticking all of our mindful boxes, it's ticking all of the community boxes. It's a great place to gather and it's a great place to talk and sit gently." So, we are creating or I'm creating a space where people can come and talk. They can learn about MS, they can ask questions.   They can be with people with MS. We can sit and sew. I've got artists going to come in to do demonstrations, or little workshops for people to come and join in with so they can learn. They can see and they can be immersed in something mindful and beautiful. Hopefully, the weather won't be too rubbish so that we can enjoy the outside space as well and raise money for OMS.   Geoff Allix (28:48): Is there anything for people who can't physically get to South Devon?   Tessa Jane Miles (28:55): Yes, there is. We're going to do a postcard auction. It's a silent auction, many of the artists that are taking part, and even George Jelinek is doing me something. I have a lovely card from Grazina. These cards will be online and they'll be at the show and they can be bought.   What we are asking is that you propose a fee, amount, a donation. As the month goes through, if you're outbid by somebody else, you might have to raise it. You can buy these postcards; I can post them out to anywhere in the world. So, everybody can be part of this thing.   I'm looking for people to knit squares for me, to do bunting and things like that. Again, they can be knitted wherever you like and they can come in. Everyone can take part. The other thing is, if you can't take part, then if you're on social media in any form, Twitter, Facebook, or Instagram, share it. Get it out there, because the more people that see, the more people that bid for these postcards. Also, I don't know if you can buy online, but you can certainly phone up afterwards if you see something that you really love in the show. Or you see it on the Instagram because I'll be covering all of it throughout May. Yeah, and we will ship it to you. If you want it, we'll get it to you somehow.   Geoff Allix (30:24): It could end up being a famous artist.   Tessa Jane Miles (30:26): It could, yes. There are some international and really big names that I'm hoping will contribute. I can't say exactly who and what yet, but I have lots of promises. There's some sculpture being donated for me to sell. Yeah, I'm really excited. Join in, spread the word, and help hit that target.   Geoff Allix (30:50): A bit more about the creative side, and this is something that I hadn't heard before, but that you are quite interested in brain scan-based AR.   Tessa Jane Miles (31:01): Yeah.   Geoff Allix (31:04): I work in IT, so I'm aware of AR, but this, yeah, for an art space, it sounds very futuristic. Tell us a bit about that.   Tessa Jane Miles (31:16): Well, I'm very lucky to have worked with Plymouth University's [inaudible 00:31:21] team a project to do with balance. I said to them, "Oh, if you want an artist to illustrate any of it and all your findings, just say." It was a total off-my-head type comment. Didn't really think anything of it. But, several months later, they took it up.   I've been working with them and I've been using my MRI scans to create screen print slides. I'm putting them together and creating artwork that's a combination of my scientific brain scans and imagery. It looks like, I mean, for instance, trees, to me, look like the nervous system.   Obviously, trees are all connected and they have their nervous system. So, that goes brilliantly with the fact that all of us OMS people are connected and our nervous system is attacked by ourselves. There's this conceptual story and that's why I'm saying it's not enough for me to just paint pretty pictures.   I'm totally absorbed in this body of work that's to do with that. I've created an MS Chair. It's all my brains and scans and imagery and it's on an upholstered chair. That will be there. That's why we're encouraging people to come and visit and to join in and see what it's all about.   So, they will be present and they're going to be part of the show too. They're developing an app, which is another trial that I'm doing. Yeah, so we're trying to get all of these different things together and use the art to illustrate and tell the story. That's what my work is all about.   Geoff Allix (33:07): With that, Tess, thank you so much for being on the Living Well with MS Coffee Break and allowing the community to get to know one of its own a bit better. But we do have one last question, which is a tradition that we tend to ask people. If you tapped into your experience with MS, and specifically OMS, for a nugget of wisdom that might help new people adopt the OMS program, what would that advice be?   Tessa Jane Miles (33:32): Ooh, to realize that it's not necessarily a cloud, it could be a silver lining. It's because of my art I've found that living with MS has enriched that. It's added to it. Being part of a community and joining with the Circles has given me a safety net and a support system. To not be afraid to reach out. Any question is not a daft question. If it's bothering you and it's worrying you, ask it. Someone, somewhere, will try and help you find the answer.   Geoff Allix (34:21): That's what we say in IT. I remember someone saying that the only daft question is the one you didn't ask before you crashed the entire system.   Tessa Jane Miles (34:30): Absolutely.   Geoff Allix (34:32): Which kind of applies to this as well.   Tessa Jane Miles (34:35): Yeah.   Geoff Allix (34:36): With that, thank you very much for joining us.   Tessa Jane Miles (34:39): Oh, you're very welcome. Thank you for having me. Yeah, join my 10 for 10. Get involved.   Geoff Allix (34:44): Yeah. All the links are in the show notes, have a look and you'll find links to everything there. Tessa's Instagram, Twitter, Facebook, and Delamore Arts are all listed in the show notes.   Tessa Jane Miles (34:55): Thank you.   Geoff Allix (34:56): Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you.   You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.   To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter, so you can stay informed about the podcast and other news and updates from Overcoming MS. 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