Living Well with Multiple Sclerosis

The 100th episode with Dr. Jonathan White | S4E24

Welcome to Living Well with MS Coffee Break #36, where we are pleased to welcome Dr. Jonathan White as our guest for this very special episode, our 100th podcast in the Living Well with MS series! Keep reading for the key episode takeaways and Jonathan’s bio. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. Jonathan’s bio: Career: Jonathan went to University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss. In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. Overcoming MS and personal life: Jonathan was diagnosed with RRMS in October 2015 and has been following the OMS Program ever since.  Dr. White assists OMS as a medical advisor and event facilitator. He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film and spending time with his family. You can learn more about his background here.  Selected Key Takeaways The new Handbook is an accessible version of the original Overcoming MS book: (8:58) “I've always thought of the main OMS book as being a textbook, almost like a reference guide. Whereas the, Overcoming MS Handbook is a lovely light and easy [book] that you could dip in and out of. I loved reading it and I picked up lots of tips. And it was great to hear from the community itself.” The first 10 years of the Overcoming MS charity’s message of hope has been groundbreaking: (13:39) “I think [the OMS charity] has been paradigm shifting and groundbreaking. That message of hope, of us giving people a sense of mastery. That the traditional description of this condition - and how it affects people - doesn't have to be that way through relatively simple things that you can do for yourself. And I think that [message] came at a time where it was so needed. In fact, now it's needed more than ever.” The Overcoming MS Community plays a very important role: (20:41) “[The Overcoming MS Community] fills the bucket completely for me. It's been a wonderful privilege professionally, as well, to be able to spend some time with people, like myself, living with MS. And to hopefully give them a little bit of information, to clarify some things for them and to maybe steer them in the right direction. And then to see the amazing changes that they implement in their lives. It is so gratifying professionally to be able to help someone like that.” Find the life worth enjoying… with rebellious hope: (25:40) “Dame Deborah James, who was a phenomenally passionate cancer campaigner, … sadly passed away in June, 2020. But her very last Twitter post....just spoke to me and I thought she's put this so beautifully. This is exactly how I feel about OMS [Overcoming MS] and MS generally. So I'm going to use her quote. She said, ‘Find the life worth enjoying, take risks, love deeply, have no regrets and always, always have rebellious hope.’ And I just love the idea of rebellious hope, because that to me is me and it's me and [Overcoming MS] OMS.” Related Links: Books: Overcoming Multiple Sclerosis and The Overcoming MS Handbook Join an OMS Circle Dame Deborah James’ You, Me and the Big C podcast   About Coffee Break: 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 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. We hope you enjoy this episode’s conversation with Dr. Jonathan White, coming to you straight from Northern Ireland.   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 favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Calming the Chaos – in Conversation with Mattie Cummins | S4E23

Bio:   Mattie is a counselor, brain coach and CEO of Cerebrations, LLC, with over 25 years of experience in social work, counseling and coaching for people with anxiety, chronic pain, neurodiversity, and other life transitions. Mattie guides people on a journey to harness the power of brain science and body awareness to master the art of thinking, and begin thriving, instead of just surviving.   Mattie has a bachelor and master's degree in social work and her varied experience in nonprofit leadership, system advocacy, program development, brain function, and counseling provide a unique perspective on resilience, creativity, and how to empower people to tap into their own inner strength, beauty, and experiences to calm their internal chaos.   Selected Key Takeaways   Mindfulness is about being present and aware of your body and emotions as much as possible throughout the day: (7:19) “We do a mindfulness practice around breathing or visualization to calm down the brain so that you can then begin to, to hear what's happening in your brain so you can actually change the cognition.”   There are a multitude of factors that influence mental and physical health in a PwMS, some that are directly related to multiple sclerosis and others that aren’t. (8:21) “There are all these layers of the reason why we live in chaos. And that can be lack of sleep. That can be grief from the MS. That can be just changes in our relationships because that happens too. And that's going to affect the way that we feel.”    It’s important to have a variety of strategies and tools to deal with stress and life changes. (11:54) “Life changes anyway, I mean, but when you have autoimmune disorders, life changes drastically sometimes at the drop of a hat. You have the, like, I call it a toolbox. You have a toolbox that you go, Hey, life's got more stressful. I'm going to pop open the top. I'm going to pull out the tools that work for me. And we're just going to add in some different tools for this particular situation.”   No one is perfect and self-compassion is vital to reducing stress and embracing the unexpected.   (17:24) “Thriving to me is living in the joy of life and being present. When we have the capacity to be present, understanding when we don't have the capacity to be present, but that we actually walk through every day with a calmness that today is going to be whatever day it is.     Related Links:     OMS blog by on tips to reduce stress-related inflammation OMS resources for managing anxiety Check out the Art of Anxiety class online Join the Calming the Chaos Collective, a free group experience Dig deeper into Mattie’s thinking by reading her blog   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. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Yoga Moves MS with Mindy Eisenberg | S4E22

Bio: Mindy Eisenberg, MHSA, C-IAYT is the Founder and Director of Yoga Moves MS, a nonprofit with the mission of improving the quality of life for individuals with MS, Parkinson’s Disease, and other neuromuscular conditions through the provision of adaptive yoga and holistic health and wellness education. Mindy has provided yoga therapy to individuals with mobility challenges for over 17 years and thrives on building a strong, mighty community for her students, their families, and care partners. She is the author of Adaptive Yoga Moves Any Body, created for individuals with MS and neuromuscular conditions and Adaptive Yoga Cards, daily yoga moves for all ages and abilities. She is a qualified Mindfulness-Based Stress Reduction Teacher and certified Buteyko Breathing Instructor. Her experience as a health care administrator at the University of Michigan Medical Center contributes to her ability to bring the Yoga Moves philosophy of healing to the healthcare arena. She created the cutting edge annual Virtual Holistic Health and Wellness Forum for MS; presents to corporate, academic, and yoga therapy organizations; conducts adaptive yoga teacher trainings; and offers small group and private therapeutic yoga, breathing, and meditation sessions. She lives with her husband and pets Felix and Oscar, in Michigan, and loves to visit her daughter and son, Julia and Noah, in New York City.   Selected Key Takeaways Anyone in any body can benefit from yoga (8:14) “This is a big issue that people are fearful of yoga or they think they can't do it. It's in the forefront now, it's a mission of mine to help people understand that anyone can do it. And yes, yoga does lend itself to adaptation because the idea is that you are not forcing your body into a pose. The pose is supposed to benefit you.”   It’s more about the journey than the destination (16:56) “Yoga is called a practice for a reason. And the practice is every day you get on your mat or you sit in your chair and you have a breath practice and that is going to change on a daily basis. It's not about getting the A or, nailing the pose... It's not a pass fail. 99% of yoga or meditation or Tai Chi is actually showing up and doing it for yourself. I feel strongly about that.”   On making peace with your body (20:48) “The idea with yoga is it's actually making friends again. You know, some people say that they're at peace with their body when they do yoga and the idea with the adaptive yoga is you're not identified by your MS. You know, that your MS isn't you, that's not who you are.”   On using the breath as a barometer during yoga practice (31:46) “The other measurement we use in yoga is the breath. And so you always have that barometer, if you will, where if your breath is fast and rapid and shallow. That is a really good indicator of fatigue. If the breath is non-existent meaning holding the breath, that is also an indicator of either fatigue or fear or a need to back off.”   Related Links: OMS exercise videos (filter by “yoga”) OMS stretches to improve spasticity Visit Yoga Moves MS on Facebook, Instagram or YouTube   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. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Marijuana and MS with Dr. Mikhail Kogan | S4E21

Bio:   Dr. Mikhail (Misha) Kogan, MD, ABIOM, RCST is a leader in the newly established field of Integrative Geriatrics.  He is the chief editor of the first definitive textbook of the field entitled “Integrative Geriatric Medicine”, published by Oxford University Press as part of Andrew Weil Integrative Medicine Library series and is frequent speaker at a variety of international conferences on the topics of Integrative Medicine, Geriatrics, healthy aging, as well as medical cannabis.   While Dr. Kogan’s main medical cannabis expertise is in treating older patients and palliating symptoms at end of life he also treats a wide arrange of internal medicine problems from chronic GI problems to cancers where use of medical cannabis can be very beneficial.  In October 2021 Dr. Kogan, in collaboration with Dr. Joan Liebmann-Smith and Penguin Random Publishing House, published Medical Marijuana, Dr Kogan’s Evidence-Based guide to the health benefits of cannabis and CBD. Dr. Kogan currently serves as medical director of the GW Center for Integrative Medicine, associate professor of medicine in the division of Geriatric and Palliative Care, and associate director of the Geriatrics and Integrative Medicine Fellowship Programs and director of Integrative Medicine Track program at the George Washington University (GWU) School of Medicine. Dr. Kogan is also the founder and the executive director of AIM Health Institute, a 501(c)(3) non-profit organization in the Washington, D.C. metropolitan area that provides integrative medicine services to low-income and terminally ill patients regardless of their ability to pay.  Questions:   Background   You have a diverse and impressive background, including integrative medicine, serving as an Associate Professor of Medicine at George Washington University, founder of a health nonprofit, and author. So cutting to the chase, what has gotten you to the place where you’re one of the leading medical experts on cannabis? People have all sorts of associations with cannabis, mostly around its reputation as an illicit substance. Of course now it’s being legalized for recreational use in many places around the world. Can you speak to its use for medicinal purposes? What’s the medical backstory of cannabis? Maybe we can shift to a little rudimentary chemistry and biology to understand how cannabis works medically. Can you provide a layman’s explanation of the human endocannabinoid system, how the cannabis plant interacts with it, and the difference between CBD and THC?   Dispelling Myths   There are a number of perceptions around cannabis and its use, and I wanted to see if we could validate or dispel some of them: Firstly, is cannabis a gateway to harder drugs? Is it safe to use? Are there side effects? What about the argument about how effective it truly is for medical use? Can you speak to the efficacy ranges for cannabinoids? Is there an evidence base to suggest cannabis is effective as a medical treatment?   Cannabis and MS   If we shift the focus to MS, can cannabis be helpful? How does cannabis impact MS spasticity? And what about using it for pain management. Does it alleviate pain that may be associated with MS? So are there any downsides to using cannabis as part of an MS treatment regimen? Perhaps adverse interactions with DMDs? Which cannabinoids should someone be taking to get an anti-inflammatory effect? How do you prescribe or recommend the use of cannabis in your own medical practice? Maybe put another way, how does someone determine if they’re a good candidate to use cannabis medically? The organization behind this podcast, Overcoming MS, is a big advocate of healthy lifestyle choices. How does cannabis fit with healthy lifestyle choice in your view, Misha?   The Future of Cannabis   What is the current research activity around cannabis? Anything we should be aware of down the pike? What does the future hold for using cannabinoids for disease modification? And lastly, your book. You’ve just released a new book called Medical Marijuana. There’s a link in the show notes for more information and where to buy it. Can you tell us a bit about the project, what it’s about beyond what the title implies, what kind of impact you hope it will have? Thanks so much for being our guest on Living Well with MS, Dr. Misha Kogan. We are thrilled to learn about the amazing work you’re doing to help people navigate the intricacies and benefits of medical marijuana. 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, Misha.   Links:   Kogan’sbio Kogan’s new book,Medical Marijuana, selected as one of the summer 2022’s best science reads Kogan is Medical Director of theGW Center for Integrative Medicine Kogan isAssociate Professor of Medicine, George Washington University Kogan is Founder and Executive Director,AIM Health Institute, a DC-based nonprofit delivering integrative services to underserved Kogan’s personal website can be found here Kogan can be found on social media here: Facebook and YouTube   Coming up next:   Join us for the 35th installment of the Living Well with MS Coffee Break series, and get to meet Ann Coulson, who has been part of the OMS community even before such a thing existed and has been following the work of Professor George Jelinek dating back to its inception. Ann is undertaking an exciting adventure – sea kayaking around the Isle of Wight – to raise awareness of and funds for OMS. You won’t want to miss this dynamic discussion!   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.   S4E55 Transcript Medical Marijuana   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. Now, let's meet our guest for this episode. This episode of the Living Well with MS podcast is marijuana and MS, a conversation with Dr. Mikhail Kogan. Dr. Kogan is medical director at George Washington University Center for Integrative Medicine in Washington, D.C., amongst many other things, and is the author of the book, Medical Marijuana: Dr. Kogan's Evidence-Based Guide to the Health Benefits of Cannabis and CBD.   Welcome to the program, Dr. Kogan, and thanks so much for-   Dr. Mikhail Kogan (01:38): Thank you.   Geoff Allix (01:38): ... joining us on Living Well with MS. Firstly, are you okay if I call you Misha? I believe-   Dr. Mikhail Kogan (01:41): Yeah. Yeah. I much prefer that.   Geoff Allix (01:43): Okay. Excellent. You have a very diverse, impressive background, including integrative medicine and serve as an associate professor of medicine at George Washington University, you're a founder of a health nonprofit, you're an author. To cut to chase, what got you to a place where you're one of leading medical experts on cannabis?   Dr. Mikhail Kogan (02:07): Random and not so random set of events. Well, so I think I always was leaning towards holistic or integrative medicine even before the medical school. That was just given. But in early 2010s when D.C. approved medical cannabis, I started finding myself patients asking me all the time. I realized that, well, I have two choices. I can just follow the crowd, so to speak, or I can jump in it because it felt to me at the time that some of my patients, at least the older patients, could potentially benefit a lot.   Then at around the same time I met Donald Abrams, I don't know if you heard his name, and he's a grandfather of the cannabis research field, if you will, in clinical settings. So he also helped me to establish comfort zone. I think for me, the big problem was not just, does it work or doesn't it not work? It was more around this whole background information. I grew up in Russia. It was thought to be this terrible drug that if you take it once, then that's a life of alcohol addiction, prostitution, gambling, and early death.   This is how we've been told. I think some of this was completely ingrained in me. The hard part was just to kind of get over that and say, "Okay. I'm going to put aside everything I've ever heard about this. I'm just going to really learn it." In the beginning, learning was tough because there's nothing. 10 years ago, the amount of information like a formal learning was extremely limited, so I think I ended up learning a lot of things from a close collaborator I worked with.   Beth Hayes is one of the people who taught me a lot. If you want to say she's a cannahacker. The early cannahackers. After that, of course there started to be a lot more data and a lot more formal training programs. I've taken some courses here and there. I've listened to a lot of experts. I don't actually call myself a cannabis expert, believe it or not, mostly because I integrate cannabis in a very broad spectrum of treatments.   There are people who just do to cannabis and that's all they do. They're cannabis doctors, I'm not, not even close. Cannabis is just one of my skills. I've learned to be comfortable with some parts of it, but there are definitely things that I don't know. Like I don't treat much of kids or I mean, I don't do pregnancies. I mean, I'm not a gynecologist or... So there's a lot of things I don't do and so I don't necessarily claim any expertise there.   MS is one of those things that I do treat. That's why I thought it would be good to talk to you because as a geriatrician and especially as a palliative care doc we see a lot of cases of patients with progressed MS, patients who are older and have MS. So I've learned to be very comfortable with cannabis for this condition.   Geoff Allix (05:24): I think everyone's probably aware of the recreational uses of cannabis, but what sort of medical history is there? Is there a background to it being used medically?   Dr. Mikhail Kogan (05:40): Well, if you go back... And this is thousands of years ago, this is one of the oldest drugs known to humans. China used it more than 5,000 years ago and India pretty much any culture had some use of it in one way or another pretty much. I mean-   Geoff Allix (06:01): This is a medical use rather than the recreational use.   Dr. Mikhail Kogan (06:04): Well, yeah, I mean, I think back then, who knows how those things were... They were overlapping just like now, so somebody would use it for aches and pains, but also would use it ceremonially. I don't know if back then the word recreational was in the vocabulary. There was of course a lot of ceremonial use. Yeah, but we don't really know exactly what they were doing with it. I mean, we think that the Siberian princess story was pretty fascinating.   They found this mummy in Siberia that had breast cancer and there was a cannabis next to her, presumably she was using it topically for applying right in the breast cancer. But those are all speculations. The reality, who knows? But the real documented use that was really documented use was in the Chinese Materia Medica. I think that's what they call it, where it was clearly documented it was part of their standard care for all kinds of conditions.   Then modern times, I think we ought to mention some of the pretty well-known positions. One of them is in your own backyard, used to be in your own backyard, O'Shaughnessy. He brought cannabis from India to England, and first was using it with royalty, with people from the palace, palace folks. Then it propagated from there. In the 1800s, mid-to-late 1800s, it was all over in Europe and America. In the U.S., they were using it as a standard drug.   It was written into a standard [inaudible 00:07:37] of U.S. up to sometimes in the 19th century. It was just a standard medication. Back then, there was not this discussion, does it work? In fact, it's crazy to think about this now, but in 1937, when U.S. government tried, or actually did, institute a tax, it wasn't a huge tax, but it was a tax that basically put most of the medical use of cannabis out of business because they taxed it at the point where consumers said, "Forget, we're not paying for this."   In one little swoop, it was all destroyed. The only organization that spoke against it was the American Medical Association and the commission of the AMA to The Hill basically said something along the lines of, "This is one of the most effective tools for all kinds of medical conditions and it's basically irresponsible to tax it because it is a medicine. It's a drug." That's actually documented in the Library of Congress.   That particular statement that was sitting there as historical evidence that back before prohibition, the standard medical association would say, "It's a drug. We use it every day." And every pharmacy was carrying it. It was sold left and right. They were combining it with morphine tinctures. They were combining it with all kinds of other things that for now, for them, for decades after we were like, "Oh my God, this sounds scary." No, it's not.   It's just we have forgotten. We're coming back to well-forgotten things and we're trying to now prove their efficacy again. It's like spinning the same wheel again and again, but it has to happen.   Geoff Allix (09:31): Now that we understand a lot more about how things work, could you explain a bit about the chemical, biological side of how the endocannabinoid system works and what actually happens and the different cannabinoids as well? What's the difference between CBD and THC and what is actually going on now that we do have some understanding?   Dr. Mikhail Kogan (09:56): Yeah, yeah. Sure, sure. By the way, so while we were using cannabis for thousands of years, but the actual understanding of how it works and what it does is relatively fresh. I mean, the THC was discovered in the 60s, same with CBD, but the actual endocannabinoid system, that took another 20 years or more. It took a pretty long time to get to a point of understanding, and I have a strong suspicion that we're only in like baby steps, that we are going to learn way more.   But not to go into this topic too much, because in itself it's a whole system of medicine really. The listeners can think of it this way. We always talk about the endogenous opioid system. Our body produce morphine-like equivalents and that controls pain and that makes us feel euphoric or feel well. Well, turns out there's what we call an ECS, endocannabinoid system. Instead of THC, which is what the plant produces, tetrahydrocannabinol, we have 2-AG and anandamide, so those are the two primary.   There's actually a lot more, but those are the two big ones specifically, and the anandamide, which in Sanskrit I think means bliss. Those are the internal molecules that work like a lock and key. You put the lock in a key and you open certain pathways, you trigger certain things to happen. There are big categories of things that can happen when our own endogenous cannabinoid system gets triggered or activates itself.   One is that we of course can't control the pain similar to opioids. But the bigger one is thought to be a couple of other things. One is neurotransmitter regulation, so we can control excitation or neural excitation with cannabinoids. That's one of the key reasons why cannabis is thought to be so critical in trauma resolution and that's why so many patients with post-traumatic stress disorder are heavily using it because it's the most effective tool that makes perfect theoretical sense.   Since our own system controls the trauma response, why wouldn't the exogenous molecules do the same? They do. There's no question really about that. That's one big one. There's a very strong regulation of immune system, and that actually is important for MS. There is more and more understanding that cannabinoids, endogenous and exogenous can regulate the immune system appropriately. That is very complicated by the way. It's not just based on... Because nervous system can also regulate the immune system.   It's a lot more complicated. There are other direct immunological receptors and immunologic pathways that can be regulated. Some molecules in cannabis, like CBD for example, have very strong neuroprotective and immunomodulation in the Petri dish. Now it's a little different in humans and animals. There's just not that... I mean, there's a lot less understanding yet, but it does seem to have those effects that I just mentioned.   Geoff Allix (13:16): Is there double-blind placebo controlled-   Dr. Mikhail Kogan (13:20): No. That's what I'm saying. No. There isn't.   Geoff Allix (13:23): All right.   Dr. Mikhail Kogan (13:24): Yeah. These are basic theoretical works. Some of them are in Petri dishes, so what we call in vitro, some of them are in a small or larger animals, but in terms of an actual human data, there's not a lot. I think what's really missing from human data is a combination of clinical data. I give THC to a patient with pain, the pain gets better. We have a little bit of that. Well, actually we have some of it, but then what actually happens on a mechanistic level at the same time?   Parallel studies doing both clinical, but also deeper dive into the physiology of change are few and far in between. But there is an explosion of that. There's an explosion of interest. There are explosions of studies. I actually think, Geoff, you mentioned that England is more conservative. It may be clinical, I don't know. I don't practice there, but I would say in terms of research, you guys probably are a little bit in a way ahead of the pack, because actually there's a lot of studies coming out of England.   U.S. has had cannabis as a schedule one. What that means... A DEA schedule one. It means that as a physician, I have to get a very special license to study cannabis and I cannot, under any circumstances, obtain actual government funding to study its benefit. I can only obtain government funding to study toxicity and side effects. That set us backwards decades. We would've been way further ahead.   Only now in the last few months there's been shift that now at least government says, "Okay. Fine. We're still not going to allow you to study benefits on government funds, but at least what you can do, at least we're going to give you access to more products." Because in the past it wasn't just, I can't study the benefits. That was one issue. The other issue was, well, you only get like two/three products that somebody growing out there, like specific... Those products are like back from 70s and nobody uses them in the real life.   You go to dispensary and you... We just talked before the... Right? You went to Seattle to check those things out and there's hundreds of products there. That's what's in real life. But studying that real life has been very challenging because of the legal status. Now, what's going on in England is of course the Sativex and Epidiolex have been available, which are the pharmaceutical-grade extracts of nabiximols what we call it. It's a direct extract of the plant, a different ratio.   THC and CBD one to one with Sativex and pure CBD with Epidiolex. You have drugs and then drugs are a lot easier to study from a legal perspective. Now in the U.S., we actually only have Epidiolex and everybody is really interested in studying more with THC because CBD has some great things that it can do, but it's highly limited and really as I often joke, [inaudible 00:16:43]-   Geoff Allix (16:43): We have a strange situation in the UK where theoretically, you can be prescribed Sativex but there's the National Health Service, which is broken down into regional units, and the proportion that actually do prescribe it is tiny. For example, I can't get Sativex. In Wales, you can get Sativex but there are very few places that actually do prescribe it. Just to come onto actually why they don't, because we have a large moral side to this that a lot of the print press say that cannabis is a gateway to harder drugs. I don't know if this is an area where you would have any knowledge. Is it a gateway to harder drugs? Is it safe?   Dr. Mikhail Kogan (17:32): Oh no, no. This is such BS. I'm sorry, I'll be so critical. This is like what we know. The data is very clear. It's not a gateway. It's an exit drug. There's no question about it. I mean, there has been study upon study in U.S. and for me, I'll tell you why it's so critical. I'll come to that in a second. There's been multiple studies to say, "If the state approves the cannabis..." And it doesn't even matter for what condition, because once it's approved, people can say, "Look, I have cancer."   But they're going to use it for... Nobody controlling that. Right? Once they have access to it, they can use it recreationally for what they care. What we know, this is a practical data, this is why I was so critical. The moment the state approves the cannabis, you see a dramatic decrease in medication use. We are talking here, listen to the data, more than a million prescriptions per day, or more than a million drugs taken per day per state that has legalized it.   That includes opioids, benzodiazepines, and a bunch of other drugs. In essence, the sleep aids go down, pain use medications go down. The data goes like this. Not only is that the total amount of opioids goes down in some massive amount, but you have 30 to 40% decrease in mortality related to the opioid toxicity. Now think of it this way, in America, every year, you have tens of thousands of deaths from direct application of opioids or indirect toxicity, both.   If you can save 30%, I mean, we are not talking about a few deaths. We are talking about tens of thousands of lives every year saved if cannabis gets approved and yet there are still politicians who say, "Oh, you take it once and you're done for." It's very unclear to me, why is this still happening? Because the data is out there. I mean, I'm talking about studies in JAMA, New England Journal of Medicine. I am not talking about some obscure medical journals.   I'm talking about researchers who are NIH-funded, main institutions of United States of America. Yet we are not moving. I'm guessing... Or well, my father used to joke. It takes like literally generations to die out before academia and politics shift. I think it's actually even more than that. I think we have an institutionalized fear and institutionalized racism related to it and nobody wants to give it up.   It's comfortable to say that, "Oh, only Blacks are using this because it's bad for them and they're getting addicted and all of that." It was very good strategy to use as a tool for racism, and it's still the same way. It's changing very slowly and there is an attempt to maintain the status quo. What shocks me is that usually in medicine, when you have data of the magnitude I just mentioned, that usually shifts the needle within, I would say a decade.   We are not seeing that. The studies I mentioned, first of them started coming out 10 years ago. Like 2012 was one of the first studies to say if particular states that have been early adopters of cannabis, they've been seeing dramatic decrease in mortality related to the opioid use. Subsequently, we have better data. The data after that would be more precise, it would say, "Okay. Well, so this how many less prescriptions of opioids are taken per day? This translates to X amount of an actual decrease in mortality."   Now that data is also about five years old. Why are we not seeing any political discourse? I talk about this at every corner, because I believe that it has to be brought up as a universal tool for pain, and with that, we're probably going to see a massive drop in use of opioids. Of course, I don't really care about saying this-   Geoff Allix (21:51): I think what's happening in the UK is that... I mean, so here it's illegal essentially but I know I could buy cannabis today because I walk with my dog and I go past and there's a field where there's a bench and quite often there's kids there or teenagers there.   Dr. Mikhail Kogan (21:51): That are smoking. Yeah.     Geoff Allix (22:10): I can smell they're smoking cannabis. It's distinctive, isn't it? I know that I could probably... But the thing is, if I then find out who the dealer is who's supplying them, almost certainly that would be somewhere where I could also buy cocaine, MDMA, LSD. That's really in my mind where it becomes a gateway, because actually you're forcing people who want to use cannabis to go drug dealers [inaudible 00:22:36]-   Dr. Mikhail Kogan (22:36): Right. Right. Right. But we are not talking about that. I mean, we are talking about a medical tool. I'm actually... I'm having a great time because I didn't realize that England is so backwards actually, because in U.S., most of the states by now have approved medical. There is no question that within less than decade, we're going to have an entire country approve it just because of money.   The governments of the states, they're making so much revenue on taxation that everybody wants it. This is one of the few universally bipartisan issue in every state that gets passed through every state legislature with no problems because they want it. I mean, both sides say, "Hey, we need money, so let's get cannabis through because we need to fill up the coffers."   Geoff Allix (23:26): Yeah. I believe we're one of the biggest producers of medical cannabis in Europe, but not-   Dr. Mikhail Kogan (23:26): Probably.   Geoff Allix (23:31): But it's exported.   Dr. Mikhail Kogan (23:33): But it's exported.   Geoff Allix (23:34): Which is insane.   Dr. Mikhail Kogan (23:36): Yeah, it is. It is. It's... Yeah.   Geoff Allix (23:38): To come onto MS specifically, can cannabis specifically be helpful for MS and what help could it be? Would it help things like spasticity of the brain?   Dr. Mikhail Kogan (23:49): Right. Right. Well, when I was preparing for this, I thought of doing a couple of things. One, of course people can go to my book and there's a whole chapter that I kept it open here on MS, starting on page 190. We talk a lot about symptom management in that chapter. That's the first part. The first part is multiple sclerosis of course is characterized by the spasticity and chronic pain from that spasticity.   The cannabis for that is proven. It's not just proven, maybe. It's undoubtedly proven. What's not a hundred percent clear is though what should be the best products to use? We think that the daily dose of THC for MS needs to be somewhere high in contrast to some other conditions. For MS, you probably need somewhere between 20 to 50 milligrams of THC per day in whatever the form you need to take it in.   But what's not clear is okay, well, is the cannabis itself, medical cannabis as a whole, plant extracts or smoking or vaping or whatnot, better or worse than let's say an oral medication? Whether it's Sativex or whether it's Marinol in U.S. or whatnot. That's not very clear. There have been very few side by side studies, but what we do know for sure that somewhere close to half of all the patients with MS using cannabis, they often don't report. That's also known, and they generally universally say it's helpful.   Now, is that randomized trial data? No, it's not, but it's in such mass that there's no doubt in anybody's mind. Whoever takes care of as a provider... Myself included, takes care of patients there's no doubt that it's effective. Question becomes, okay, safety versus effectiveness. In medicine, you always do no harm. Yeah, if somebody's smoking cannabis and they have MS and they already have spasticity and their lungs may not work very well, is it smart? Probably not.   You may want to consider giving them something under the tongue or oral preparation so they don't put potential toxic substance on inhalation into their lungs. That's one domain. The bigger question in my mind, and this is a very radical thought process here. Can cannabis play the role in disease modification of MS? Meaning, can people take certain formulations of cannabis that will actually slow down or even reverse progression of MS?   I'm not afraid of saying that because what I'm trying to say is this, there seems to be a very strong signal in every neurodegenerative condition, whether it's Alzheimer's, Parkinson's or MS or ALS for that matter, that the cannabis plays a role. What we don't know is this, okay, if I have a patient in front of me, what should I give them to help their disease process not just their symptoms? To help their symptoms, we've already been doing it for decade plus.   Now, can I do something to them practically to alter the course of MS? The answer to that is we don't know, but we think, yes. The data from control trials doesn't exist, but we seemingly have preliminary data from in vitro studies and also small animal models that says, yes, just like with cancer, we're seemingly able to affect the disease process itself. If you think about this, it makes a lot of sense, because you have to think about what is MS?   Well, it's a neurodegeneration and it's characterized by a strong inflammatory state, neurons die and the spasticity forms as a symptom, not necessarily that that's a pathology in itself. Different cannabinoids... And there's more than one. There are probably dozens if not hundreds, that actually have those neuroprotective and anti-inflammatory properties. How much should we take? Should we tell all patients, everybody should take 200 milligrams of CBD per day? No clue.   This is why I think the future of the next decade should not concentrate on, does this work or not? Okay. There are tons of skeptics. There are people saying, "Well, only oral medications work. There's no data that cannabis works." I don't care. Patients are going to be using it. Those experts can say whatever the they want. That train is so far gone and they're so in the past that just they're in academia and they think that they know something. It's just nonsense.   The question is, what should the study designs look at in terms of an actual disease modification? Here, I have certain opinions. First of all, I feel strongly that the minor cannabinoids, we're not talking about CBD and THC, we're talking about rare things or less common things, acidic forms, so CBDA, CBGA and THCA. Those tend to be very potent anti-inflammatories, all three I mentioned, and what dose should we give them? That's one critical aspect.   The second aspect, we also know that there's a whole bunch of other cannabinoids like CBC, CBG and CBN and a whole slew of them. What should the ratios be and what should be the target dosing? Like with cancer, some thought process goes around like this, don't worry about particular cannabinoids, pick some basic ratio and then give as much as a patient can take in. Okay. That is one way to think, has no evidence to support that, but that's a way to think, because we know that from animal studies, there is a certain threshold.   For the symptoms, your mantra is start low, go slow, deliver where it needs to go. For the disease modification it's a different model. It's what is the minimum dose that's required to start altering particular process? We just don't have the data. We think we do, and there's a lot of experts way over my pay grade who say, "Look, not only do you need to titrate it up like crazy, but you also need to give different routes at the same time, because they do get in differently and they do trigger different things slightly." It gets quite complicated very quickly. The bigger issue is also partially practical. THC dosing can be quite limiting because of euphoria or-   Geoff Allix (30:38): That's what I was going to say, because I think... I mean, personally, if my spasticity was resolved, that would be the biggest single improvement for my life at the moment, but-   Dr. Mikhail Kogan (30:50): That's for the moment, but the disease is still progressing.   Geoff Allix (30:53): Well, yes.   Dr. Mikhail Kogan (30:54): That's the problem, you know? That's the thing.   Geoff Allix (30:56): But if you went for a high THC, that's the thing that makes you high, isn't it?   Dr. Mikhail Kogan (31:01): Correct. I think-   Geoff Allix (31:01): Is there any way to alleviate?   Dr. Mikhail Kogan (31:05): Yeah. That's why I mentioned the ratios because most of us would say, yeah, we know that the THC has a ceiling and I mean, yes, there are some people who can take crazy amounts and function, but an average person, they wouldn't want that. You'll get them to a certain limit. You'll spook them off and they won't go back to it because it's too altering. You can get most people tolerant and so you can gradually titrate the dose and keep titrating and they get more tolerant.   That's one way to do it, but actually a more common way we think at practice is the ratios. We would put more of other cannabinoids, not THC. More CBD, more CBDA, more CBG, more CBC. Then we would say, "Look, when you give all those other non-psychotoxic, that's the word, cannabinoids, you can add some THC in there for the synergistic effect."   Of course, there's also what we call an entourage effect, which basically means, okay, if I just give, say Sativex which is pure THC and CBD and nothing else, there's no terpenes in there or nothing. If I give that versus if I give the same exact concentration of a dose, but I keep everything else that originally was in the plant inside of that prep, whether it's a tincture or an on oil, whatever, we... Not think, we know that the efficacy of that is way, way higher.   It's probably somewhere two to one, or maybe even three or four to one. I need to give way less of a dose of the full extract oil than the Sativex. That data has been around for quite some time. Now, that doesn't necessarily mean I know how much to give a particular patient to cause the disease modification. It's simply a base understanding of what's out there in the market and what we are using.   But my next big project is really to look into some of these neurodegenerative conditions and try to say, "Can I figure out particular ratios? Can I titrate it up and see what I see?" The problem is that work like this tends to take a lot of time because these conditions are slow. They're not like cancer where you can give somebody a couple of months' supply and if the cancer changes, that's it.   The neurodegenerative conditions, they take years to evolve. They're very slow. Assessing whether something is effective, requires very sophisticated tools and a lot of time. That causes just pragmatic challenges to-   Geoff Allix (33:51): And just nothing happening can be a benefit.   Dr. Mikhail Kogan (33:54): Actually, I argue this. We have this very large Alzheimer's program and I argue with so many family members. They're like, "So when am I going to see an improvement of my..." I'm like, "You're really not understanding this, are you? Praise God that your loved one is not getting worse." I mean, that's all we... First step. I mean if we can get them better, great, but that's the first step. It's actually this whole slew of these neurodegenerative conditions.   In one way, they are a blessing because they're slow. The family have a lot of time to adapt, but they're so disfiguring from a mind perspective, then people gradually lose themselves. You watch them deteriorate, not just physically, but cognitively and mentally. In few years, you may not even recognize that the person with you is the same person you always loved. That part is extremely hard.   I think we have to research cannabis very aggressively because the signal is undoubtedly there. I have no doubt, I have zero doubt that within few decades, the cannabis will be at the forefront of curing these conditions. Why am I saying this? Well, because actually we know what happens in the models of all these conditions and MS is included. The cannabinoid system gets completely dysregulated, and the further condition progress, the more that dysregulation occurs.   Now, somebody could ask me an obvious question. Well, how do you know it's not a secondary problem? Like it just occurs because the disease is there. Sure. But we also know that if you take an animal with those conditions and you give them replacement, they seem to do better. The animal models are faster to study, like especially mice. I mean, mice models of Alzheimer's and MS are pretty easy to study because they're rapidly progressing compared to humans.   We know that it's there. Again, as I said, we just don't really have actual controlled clinical data to guide our patients into particular treatment protocols. That's the painful part.   Geoff Allix (36:12): You've mentioned some things where it might have effects which are equivalent to disease-modifying therapies, and in much of the world an MS patient could actually go out and try a variety of different cannabinoids and find one that works for them. But is there a risk that could interact with a medical, like a drug-based disease-modifying therapy?   Dr. Mikhail Kogan (36:44): Sure. Sure. If somebody thinks that this tool has no problems, they're completely wrong. I mean, just like anything, I always joke, you eat cucumbers, you will die. It's like everything has some toxic side effects. The reality is that while we don't think anybody can die from overdosing on cannabis, unless you run the car into a tree or something, but you're just not going to die from overdose. That doesn't mean there's no problems.   The THC has a lot of different side effects. Dizziness, dry mouth, memory loss in young people, some increased risk of paranoia and all those things. There's no question, but there are also some other big concerns. Could there be drug-to-cannabis interactions? A lot of people with MS of course take a number of medications. Could they be interacting with cannabinoids? The answer is yes. The good news is that the answer is yes, mostly theoretically.   We're not actually in practice seeing those interactions. We have a lot of people taking different cannabinoids, including high-dose CBD, which is actually the biggest concern. The biggest concern with the interactions is not the THC, is that the CBD in the liver it affects the liver in a way that it causes the drug-to-cannabis interactions or drug to CBD interaction. It's a really big concern for example, for patients on a high-dose Epidiolex and CBD with seizures. But at the same time in practice, we're not seeing that. We're just not really seeing what we see with other medications. We see a lot of drug-to-drug interactions in actual hospital, or somebody shows up into emergency room with toxicity because there is an interaction. We're not really seeing that. Why? I don't know yet. Maybe it's because we haven't reached the critical mass to yet see. Maybe it's because those interactions are theoretical but not practical, and that's what I actually believe.   I think some of those interactions are going to occur at such high doses that it's just people are not going to take that much, at least not yet, for now. I think the other big issue is are we worrying about quality of the products and are we sure that what our patients are buying is safe from other perspectives? I mean, right? Because it's an extract. If it's not well regulated, if it's not well checked, how do you know they buy what they pay for? How do you know there's no toxins? I'll give you one example. I don't know. You guys probably don't know this, but in U.S. we have this delta-8 THC craze, have you heard about that?   Geoff Allix (39:30): No.   Dr. Mikhail Kogan (39:32): Yeah. It's basically a metabolite or isolate of the cannabis. You can actually make it from CBD or from hemp. You can start with a non-cannabis... Well, hemp is cannabis, but little THC in it to begin with and you can make this product called delta-8 THC. It's not as potent as THC, as delta-9 THC, which is an actual THC, but it causes a lot of problems because it seemingly works identically to THC in terms of recreational use. It's just not as potent.   But to make it, you have to extract it from large volumes of hemp and almost every product that's been researched, looked up out there in the U.S. market, has toxins. We're not talking about some mild toxin. We're talking about heavy metals, we're talking about organic pesticides, residues and all kinds of stuff. So how do you control it against that when the market itself is like a wild horse running out there, you can't even catch it anymore? You constantly retract.   Congress here in U.S. is trying to say something about it because delta-8 is... Okay, for full disclosure, I tried it and I'll tell you, yeah, it's not as potent, but it's potent enough that if you take enough, you're going to get pretty much a similar effect as THC. I bought it. Like I walked into the store during a holiday with my 13- and 15-year-old kids trying to buy... Like I wanted to buy CBD tincture oil for my dog and I saw the delta-8 and they sold it to us. My kid was right next to me. I said, "Wait, go back. Let's see what..." He went back and they would've sold it to the 13-year-old.   Geoff Allix (41:20): 13-year-old.   Dr. Mikhail Kogan (41:22): 13-year-old. They would've sold delta-8 because it's a hemp product. They don't even think of it as a something, but it should really be just like THC, controlled and dispensed appropriately. We have this kind of government legal logistical nightmare in U.S. Sounds like you guys are not anywhere near that yet, but it'll reach you. It'll reach you. It's interesting to see how all of that evolves because now there's delta-10. Now there's this THCV, THCO.   There are all these other new molecules. They're not really new. They're new to market. They've been known, but they haven't been sold out on the market. A lot of what's happening is wild experimentation if you will. Certain pearls will come out of it. I'm always worried that this will negatively impact the field in the long run because it'll trigger some kind of a negative, large backlash because we're going to have some problem.   Like right before COVID hit, we had this epidemic of EVALI. It was basically bootlegged cartridges for vaping that were causing this massive lung inflammation and some people, kids, young people died. It wasn't from the actual cannabis or the tobacco. It was some kind of a preservative or something in that concentrate that activated this inflammatory cascade in the lungs. It's growing pains for the industry and for the patients, it translates in the U.S. into a logistical nightmare because doctors don't know anything about it.   That's actually a really big point. Most of the neurologists are clueless or what they do know is so little that it's completely irrelevant to their patients. They just know like, okay, maybe they shouldn't smoke or something, but they really don't understand the details at all. Patients have to go find the cannabis experts on their own usually. By the way, that was one of the main reasons why I decided to write the book.   The whole story here is that my patient connected me to a professional writer, Joan. Joan approached me first and said, "Hey, let's write something." I said, "Sure." We went to the publisher. I wanted to write the book for the older adults on this topic. They said, "Ah, forget it. We need a general book. It's too small for..." I said, "Okay."   But it was Joan's idea. Say, "Look, you have to write it in such a way that there's an actual protocol so that the doc could buy it or the patient can give the book to the doc and say, "Here, this is what's working for people. Can I try it?" I know that it'll get outdated in no time, but at least for time being, it's going to actually help a lot of providers because they're going to read this, and it's pretty simple to read, and they're going to understand at least some basics. Now, of course there are textbooks on the topic and bigger texts with a lot more detail, but often physicians they're not going to learn a whole brand-new branch of medicine just because they're just going to follow their patients.   Geoff Allix (44:40): There's links in the show notes to the book. Yeah, just released called Medical Marijuana. You said a little bit about it, but so is it useful for both doctors and patients as well? You'd recommend?   Dr. Mikhail Kogan (45:01): Yeah.   Geoff Allix (45:01): Is it worth a read for everyone?   Dr. Mikhail Kogan (45:05): It's worth a read for everyone. I mean, of course, if you're already more than an expert in cannabis this is totally too basic for you. But if you are curious about this topic, if you have a condition which you think... MS for sure, if you think that this may be helpful, the book is really for you because it's written in a way that a lot of cannabis books are not written. A lot of cannabis books are written either as desk references, which are very hard to read and their protocols are really not there.   They would summarize the studies, they would say, "Okay. Well, this study showed this." For patients, that's not relevant. Patients want to know, what should I do today? I don't care about the study. I want to know what works and what doesn't. This is what we did. This is a book written by a clinician for patients and his colleagues. That's basically what I did. I took only conditions where I felt evidence is sufficient and my knowledge is sufficient to give specific recommendations.   I avoided some controversial topics, but I also avoided topics where I simply don't have enough expertise, so of course the book is superficial. But it's deep enough for those conditions that I covered that I think people who have those conditions who are going to open the book are going to find it useful.   Geoff Allix (46:24): You mentioned wider integrative medicine. Would you say that it fits as part of that jigsaw? Because certainly Overcoming MS encourage healthy lifestyle, so healthy diet, mindfulness, taking medication as necessary and so on and so on. You'd say it's one of those pieces?   Dr. Mikhail Kogan (46:45): Yeah. I mean, absolutely, and the beauty of MS, if there is such a thing, is in contrast to Alzheimer's and Parkinson's, the chances of a complete cure are much higher. I have seen a lot more patients with MS get rid of their disease completely or put it in a permanent remission. We can't really say cure here because I think if you stop doing what you're doing, it'll probably come back, but it's a permanent remission.   As long as you're gotten better and what you did that’s integrative with lifestyle and other things worked and you keep doing this, the disease is basically non-present and you're living a normal life. That's the goal. It's a lot harder to do for Parkinson and Alzheimer's, I'll tell you that. But yeah, and it fits perfectly because, well, it's botanical... right? It's already a natural product, so to speak, but it also fits perfectly because it provides me a set of tools that certain things don't.   Generally, integrative medicine does not have a lot of immediate relief. Certain things like acupuncture for spasticity, for example, have some evidence, but generally it's a slow medicine. We give tools that gradually make people better. But if they come to me and they have pretty bad spasticity and pain, I can't really work with them unless I help them to get at least that a little better, otherwise they won't be able to exercise. They won't be able to eat.   All they will think about all day long is how do I get my pain improved? Right? But the cannabis offers that too. It's often that bridge between I would start the cannabis for certain things and say, "Okay. Once you're a little bit better, that's when the work begins. That's when I'm going to put you on a better diet, that's when you're going to start exercising, that's when you're going to start meditating and doing other things."   It takes time but I find that my practice improved so much because when I do it that way, patients start trusting me and they actually stick longer, because the big problem with our approach, I’d say people tire out. They're not really seeing immediate result and they just give up. That's-   Geoff Allix (49:00): Yeah. It's a difficult one. You sort of say to people like, "Improve your diet and exercise and mindfulness." They say, "Well, I've been doing that for a week and I've not noticed any difference." You're like, "No, you're looking at like six months or give it a long time before you [inaudible 00:49:18]."   Dr. Mikhail Kogan (49:18): Yeah. Yeah. Yeah. Because cannabis can cause shifts rapidly. I mean, I find... And I used to talk a lot about pain control, but I'm actually now talking just as much about sleep. A touch of THC with some CBD, or just pure low dose, you can have profound shifts in the sleep improvement. You can take somebody who has been sleeping poorly and because of that their energy is down, their pain is worse and everything's worse.   You start them on a touch of THC at night and you massively improve them within a week I'm talking. I mean, I'm not talking about months and months. That sometimes gives people so much instant cognitive and overall boost, the energy boost to start doing more things. That's what I find because the motivation is critical. Often, especially in neurodegenerative conditions, motivation is a huge problem. Because people already are coming in, they may have been sick for many years, they don't believe that they can get better.   They're just in the existing mode of operation, but they can't think of a better something. You shift them suddenly and they're like, "Oh, wow, I actually can feel that much better? Okay. Well, I better listen to this guy because he just did this." I think it shifted my practice significantly because of that.   Yeah. I find it a little ironic and often funny how five/six years ago, even more close to 10 years ago, I would have very difficult conversations with experts, with like neurologists, for example, who would say, "Oh, cannabis, you're going to make my patient addicted. They're dying anyway. How could you do this?" Now conversation's like, "Oh, when can you start them on this stuff?" Because they're also seeing the shift.   They don't do it themselves just yet, but they're realizing the value and they're sending me patients. I mean, they're like, "Well, what should I do with this particular patient?" It's really interesting how I'm seeing the shift not yet on the level of everybody knows how to do it, but everybody's trying to find somebody in the community who knows how to do it, which is great. Our next big step is to actually train every medical student.   I think they all should come out of medical schools, and not just medical students, nurses, and everybody, to say, "Look, I know a little bit about it. I can do some basics." That would be the day. Now, of course sounds like you guys are a little behind, but I have no doubt you'll get there. I think places like Israel, for example, or there are several countries, Canada, Israel, that nationally approve the cannabis. They're a bit more ahead of the game because they actually have larger groups of providers who've been in this for a long time.   But the U.S. is definitely on top, and definitely top three because we have so much business interest in this and so much patient interest that there is just a market for people who can call themselves cannabis docs. I don't call myself a cannabis doc. If you go to my clinic sites, either of them, you see a little bit in my bio, but we're not advocating that we're just giving cannabis to everybody. It has more to do with the fact that I use integrative medicine as a concept.   I try not to just substitute things. This is really important. I mean, we have a term for this called green apathy. When you take people away from the drug onto the botanical, it's okay. It's actually a good thing for certain things, but it's the principle that matters more. You want to simply teach patients to take care of themselves better. That's really the biggest aspect. If that means that cannabis has an exit strategy there to help them get off of something so they're onto something else, I'm all in. Yeah.   Geoff Allix (53:31): With that, I'd like to thank you so much for being our guest on Living Well with MS, Dr. Misha Kogan. We're thrilled to learn about the amazing work you're doing to help people navigate the intricacies and benefits of medical marijuana. I would encourage everyone to learn more about you and your work by checking out the link in the show notes. The book is available from all major... Well, there is one massively major book resource on the internet, which everyone knows of, but I'm sure it's available in all the others as well. I checked out that one.   Dr. Mikhail Kogan (54:02): Yeah.   Geoff Allix (54:03): I'm sure it's widely available.   Dr. Mikhail Kogan (54:04): It is available in Audible and I'm proud of the person who recorded it, so [inaudible 00:54:10]-   Geoff Allix (54:10): Is it you or not you, or?   Dr. Mikhail Kogan (54:13): No. No, no, no, no. No. English is not my first language. There was a professional actor who did the recording. It's really well made actually.   Geoff Allix (54:23): Okay. With that-   Dr. Mikhail Kogan (54:23): So listen in.   Geoff Allix (54:24): Yep. Thanks very much 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 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 Leah Tsirigotis | S4E20

Welcome to Living Well with MS Coffee Break, where we are pleased to welcome Leah Tsirigotis 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. Leah has a unique perspective on the OMS community as a partner to an OMSer. Given the importance of a strong support network, Leah provides fresh insight on whole family experience of being on the OMS journey. We hope you enjoy this episode’s conversation with Leah, coming to you straight from London.
 
Leah’s Bio:
 
Leah Tsirigotis explores her and her family’s life as the partner to OMSer Alex Tsirigotis. Discussing how her family approach living day to day with MS and incorporating aspects of OMS in their lives, alongside what she would reflect on for those new to the program or diagnosis, are ways in which she is invested in the OMS experience.
 
Enthusiastic about living a fulfilling, informed, and happy way of life, Leah discovered new passions following her husband's diagnosis with MS 9 years ago and is now a natural living and natural health advocate, natural skincare advisor, trainee naturopath, as well as a mum to two kids and full time COO of a management consultancy in London. 
 
Questions:
 
Leah, 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’re a bit of a departure from our typical Coffee Break guest in that it’s your husband who is on the OMS program. We think it’s a vital perspective to understand what it’s like to be the partner of someone with MS, especially when they are making significant lifestyle changes that may affect their spouse and family. Can you tell us a little about your day-to-day life as a partner to someone on the OMS program?
From a spouse’s point of view, how did you deal with your husband’s initial diagnosis? I imagine it was a big pill to swallow, so can you share what your initial reactions were and how you managed?
At which point did the OMS Program enter the mix? How was that experience for you and your family in terms of the changes you’d all have to make to support your husband’s efforts at adoption?
What are some of the challenges you and your family faced at first in adopting the OMS Program, namely from your points of view as the support system to someone with MS? How did you overcome them?
When did you first start to see any kind of positive results your husband experienced in following the OMS Program, and what were these? How did this measured progress make you feel as his closest family member? Has it all been worth it?
On a related but different note, you’ve recently contributed a chapter to the newly released Overcoming MS Handbook, the latest book from Professor George Jelinek, this time acting as a co-editor rather than author. Your chapter is about prevention. Can you tell us a little about the experience of working on this project?
The subject of prevention can take up a whole episode, and will in the future, but for the moment, can you distill some key insights you’ve gleaned on preventing MS in family members?
Leah, 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 as the spouse of someone with MS and being part of a family that has embraced the OMS-recommended lifestyle specifically, can you share a nugget of wisdom that would help the closest family or supporters of someone with MS ease into and better adopt the OMS program?
 
Three Interesting Facts About Leah (in her own words):
 
The beginning (diagnosis) was terrifying for me as a partner to someone with MS and with a young family on the way. This feeling lasted for several years. Time, knowledge, and perspective really helped and whilst there are daily challenges to being a partner of someone with MS, there has also been a lot of learned from the experience that serves positively in other aspects of life.
My advice for a partner or someone with MS would be to inform yourself, to understand what is happening to the body, explore the options that are available to support it positively, and always try and go with what resonates with you (your gut) when making often at times large and life altering decisions.
Take each step day by day, and be open to the sometimes-daunting prospect of un-learning and re-learning continually on your personal journey. 
 
Leah’s Links:
 
Check out Leah on Instagram
Learn more about Atoms
Leah like the OMS Strava Club
 
Coming up on our next episode:
 
Is the medicinal use of cannabis “high” on your list of topics to learn more about? Then tune into the next episode of Living Well with MS, premiering July 27, 2022, and meet Dr. Mikhail Kogan, a leader in the newly established field of Integrative Geriatrics and author of Medical Marijuana, an evidence-based guide to the health benefits of cannabis and CBD.
 
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 48 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.
 
S4E54b Transcript
Coffee Break #34 with Leah Tsirigotis
 
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 #35, where we're pleased to welcome Leah Tsirigotis as our guest. Leah, welcome to Living Well with MS Coffee Break.
 
Leah Tsirigotis (01:18):
Thank you.
 
Geoff Allix (01:21):
And did I get the pronunciation? I've met your husband, but did I get the pronunciation of your surname right?
 
Leah Tsirigotis (01:28):
You did. Yeah.
 
Geoff Allix (01:28):
We're so pleased to welcome you on our program. The purpose of the Coffee Break series to get to know some of the diverse members of our community from around the world. And today, you're in the hot seat. So this is a bit of a departure from a typical Coffee Break, in that your husband is on the OMS program, rather than yourself, but we do think it's a vital perspective to understand what it's like to be a partner of someone with MS, especially when they're making the lifestyle changes involved with following OMS and how that affects their spouse and their family. So could you tell us a bit about your day-to-day life as a partner of someone on the OMS program?
 
Leah Tsirigotis (02:10):
Gosh, okay. Yes, I can. So I guess, to be very frank, Alex was diagnosed nine years ago. And so to be a part of someone on the OMS program is quite natural to me. I can't really remember life before it and it just seems very normal, but it doesn't feel particularly out of the ordinary, but I would say day-to-day life is get up in the morning, get the kids ready for school. And Alex, my husband, [inaudible 00:02:50] for a morning run and then we go to work. He often ends his day with some yoga or meditation, and I wouldn't say the world we live in right now, but that's particularly unique to live your life that way and maybe it was 10 years ago when we first started.
 
But it's quite standard. I guess, to maybe answer more specifically OMS or being a partner of someone with MS, I guess it can be very varied and there's days when maybe more is required for myself, for him specifically. So he might be having a day where he's struggling a little bit with more fatigue or some brain fog. Specifically, some of his issues are centered around vision and balance. So he might be having a day where his head's just quite full of stuff and I need to step in a little bit more there, fill gaps around the house, like help sort the kids out or making meals. And having empathy, I think, is one of the things that comes in day-to-day, this isn't just him being unwell or something. It's something that he's struggling with day-to-day and trying to battle through. And for yourself, that can sometimes be, I have a very busy job, we've got two kids, so could be quite busy. Sometimes you yourself feel a bit tired. You want to chill, you want to do all of that. And sometimes you have to suck up a little bit more, but I'm quite used to that. It feels like we've been living this way forever. So it doesn't feel unusual.
 
In terms of OMS specifically and where that plays in, I've never known Alex with MS and not on the OMS program. So we were quite fortunate when he was first diagnosed, I think within 48 hours, we found the program. I don't think we really slept for about two days and did lots and lots of research and kept coming across things around diet, lifestyle, being really, really important. And then navigated somehow to the OMS program. It was just something that really resonated with Alex specifically, but I also resonated with it as well.
 
OMS has definitely shifted the direction in which our lives have gone, both with MS and without MS in terms of the path it's taken us down, like our values, how we look at life and how we look at taking care of ourselves has definitely shifted. We didn't have kids when Alex was diagnosed. So our kids have been brought up in that world as well, and know very little different to, I hate saying this, living a normal life. What we do is very normal to us, but as a family, it wasn't something I adopted right at the beginning, but myself and the kids, I wouldn't say we follow the OMS program, but we have a lot of synergies.
 
So we also have chosen not to have meat and dairy in our diets, but we do eat things like the whole egg. We will have things like coconut and things like that, where Alex might not, but generally, we eat together really well as a family. And we cook from scratch. We also eat prepared food sometimes. We eat out, we've both got jobs, we've got a lot of stuff going on with our kids. We've got an active social life, lots of friends and community of people and lots of self-care activities. Alex specifically does a lot of meditation and exercising. Running is something that he took up after MS diagnosis. Yoga, sleep, we watch films, listen to podcasts, read. And it's also spurred on interests that we have that we didn't have before.
 
So, I mean, for me specifically, I really started exploring maybe more natural ways of living and really starting to connect to self and the body and listening to the body and how we treat the body. So I've done studying around things like homeopathy and nutrition. I'm currently studying naturopathy. Our daily products that we use, I've become an advocate for natural skincare. And I work with people in that realm as well. All of these things are completely new and things that we never thought we would be doing. And I would say all of that has stemmed from both being a partner to someone with, sorry, on the OMS program, but that has just really shifted how we've looked at taking charge of our health and our lives. So, yeah-
 
Geoff Allix (02:10):
I certainly-
 
Leah Tsirigotis (02:10):
... sorry. Long answer.
 
Geoff Allix (08:14):
No, no, it's great. I certainly think increasingly, I know a number of people with other conditions from Parkinson's to cancer and all sorts. And if they are shown a holistic approach, it's often so similar and you just actually start to realize, and in fact, something my neurologist said to me as well when I said, "What do you think about me following this?" And he said, "Well, actually, it's just healthy for everyone." And he said, "Actually, all the stuff like mindfulness, definitely." Now, vitamin D, the NHS in the UK are now saying everyone should take vitamin D, which is completely counter to when I first started doing it, when a GP said to me, "Oh, you shouldn't take extra vitamin D." But now, they're actually saying that it's official guidance.
 
The whole food-based diet absolutely is good for everyone. So much now actually, that you think, well, this is almost, it's not even just an MS thing. It's almost getting to the point of, it's almost mainstream. Like, this is good for you, so.
 
Leah Tsirigotis (09:20):
Yeah. And I think that's why it feels so normal to us now. I mean, when this first started, he was very active, and explaining it to people was really challenging and they really struggled to get their head around it. And we struggled to explain it. And it was very much from a perspective of, well, Alex has MS And this is very specific to MS, this very specific diet and lifestyle. So much so that for quite a while, I didn't adopt any really, practices myself of any of this at all, because this was very specific to MS And I didn't have MS, so I didn't need to do it. And that thinking very much changed in the first two years, I would say, where I actually started doing that connection and research and informing and reading around health in general, where I actually realized, oh, actually, it's not just specific to MS at all. It's exactly like you say, it's specific to so many autoimmune conditions and other diseases.
 
And it's about, well, for me anyway, just incorporating as many of these things as you can. It's not about being perfect. And go off to a restaurant and have all the chips and do you know what I mean? It's about enjoying life as well, but it's just about doing the best that you can and being informed and making good choices so that not only do you reduce your risk to something like MS, if it is something that you are potentially predisposed to with family connections to that, but also so many other illnesses as well that are just rampant as people get older. Trying to reduce that and learn how to manage something like that if you were to be posed with a diagnosis or something like that. So, yeah.
 
Geoff Allix (11:17):
And for another question, so we talk quite a lot about diagnosis and how that feels, and it's quite unique, I think to people, how they feel when they're first told that they've got MS, but what we don't talk about is how it is for the spouse. And I think I'm certainly conscious of that, because my wife was with me when I was diagnosed and you're thinking, how you feel, but also, it's a huge thing for the partner as well. So how did you deal with your husband's diagnosis and what were your initial reactions and how you managed that?
 
Leah Tsirigotis (12:02):
Yeah. This is something that still feels like it was yesterday. It's really fresh. I don't know if I'll ever forget it, but I remember exactly where I was. And I was five months pregnant at the time. It was our first child, we just found out we were having a girl a week or so before. And I knew that Alex had been having, he'd been like, "Oh, I'm struggling with my vision." Or different things, but it wasn't a continuous thing. It was just soft and he was just mentioning it. And in my head I thought, "Oh, vision, migraines. My mom used to have migraines. It used to affect her vision. That's probably what he's experiencing." Didn't think much more of it.
 
He'd been having physiotherapy at the time for, he used to play a lot of football, three, four times a week in the amateur leagues. And he'd had an injury, an ACL injury. And so he'd had an operation and then he had been out, recovering for probably three or four months and then had started getting back into football and would come home and be like, "Oh, I fell over a few times when I was playing football and I kept missing shots." And it was just passing things. And he was getting frustrated with how long it was taking him to get back to the level that he was before.
 
And never in a million years did I personally think that there was anything untoward going on. What I didn't realize was that he did in his head, but he hadn't really communicated that and I think it was because I was pregnant or whatever, but in his head, he was thinking something a lot more severe. He had a friend who'd recently been diagnosed with a brain tumor and things like that. So in his head it was quite deep. So anyway, I was five months pregnant, at home after work. He was like, "Oh, I've got an appointment for another checkup with something." It wasn't important enough for me to go along. Didn't think it was going to be anything. And he called me and he said, "Oh, I've got great news. The doctor told me what he thinks might be wrong with me." So I said, "Oh, okay." He's like, "I don't have cancer or anything like that. So it's fantastic." He's like, "Yeah. Yeah. He just thinks I've got something called MS."
 
At which point I re-questioned, "Sorry. Did you say, 'He said he thinks you've got MS?'" And he was like, "Yeah, yeah. Brilliant." And I just broke down instantly on the phone. And my experience with MS was limited but was not a positive one. He wasn't expecting that, and he really understood my reaction, but then he then had a 45-minute journey home. And I was a bit of a mess initially to deal with that. And I think the next few days, so I don't think we really slept that night. My instant reaction was, I will find a cure for this and we'll overcome this. Obviously quite naively, but didn't sleep, stayed up all night, doing a lot of reading.
 
Went to work the next day as normal. Both of us did, didn't stop. Went to work, got on with the day, came home, carried on researching. He was diagnosed on a Thursday night. I think by the Sunday night he had made the decision to go with the OMS program. We'd actually, I mean, as I said, we did a lot of reading, but there was actually serendipity on the Saturday, an article in a newspaper that was talking about the OMS program. And it was a whole full-page spread about someone who had MS. And it was one of those things where you were like, "Wow, how has this happened two days after I found out about this?"
 
And it was actually an article, I think George and OMS have launched maybe that year or the year before. And he was coming over to do the first conference, I think in Brighton either that weekend or the weekend before. So there'd been some news about it. And we read about this and we'd already seen it as part of our research. So we went back to the website, ordered the book, read through it. And Alex just really connected with it. I think there were maybe some stories, I think potentially mainly George's, but a few stories on the website at that time of people who were living well and had adopted this program and had been living with MS for a few years, quite a lot of years following this type of lifestyle. And it just was something that he just decided to adopt instantly pretty much.
 
So by the end of that weekend, he'd adopted it. And I think, I mean, that was the initial diagnosis. The next six months plus were really tough. I think mentally, he was going through a lot. Well, we both were, but him specifically, and I think it's hard enough going through something like a diagnosis where you just don't know what's going to happen in the future and wanting time to speed along so you can see what's going to happen. But also, when you decide to make a decision like going down a route of quite radically changing your life at that time, that's a huge thing for anyone as well. And to be doing both at the same time, it was going to be a real challenge. So I just stepped in and stepped up at that point and just tried to allow him the space to be able to just process what was going on without having to worry about some of the basic things of life.
 
So started taking lots of different vitamins. I'd get all those out for him, make his meals, make packed lunches, try and take his mind off, "Oh, I'm really hungry. What can I eat? What can't I eat?" And make that really simple for him. Supported him with learning how to meditate. And he came to realization, he wasn't going to be able to play football anymore. And that had been such a huge part of his life. And there was a real mental health aspect of this that I think at the time was overlooked and thankfully seemed to become, again, more mainstream. People are talking about it a lot more, but it was really difficult, I think, for a male at that point to be going through something like that and not knowing what to do with those feelings. So really just trying to step in and hold him together and try and positively take each day as it comes whilst also wanting time to speed up so that you can see what happens.
 
Geoff Allix (19:00):
So in adopting the OMS program, so specifically, well, I mean for you, but more actually for having a young family, what are some of the challenges that you've had to overcome with Alex adopting OMS? I mean, it's got to be... because kids are fussy enough anyway. So in terms of eating and things like that, how do you deal with the challenges? I mean, is it just like, they don't have a choice? Or how do you deal with that?
 
Leah Tsirigotis (19:35):
Interesting one. So specifically with kids, so fortunately, our kids weren't born when we adopted this. So it is somewhat really natural to them, but obviously as they grow up and they're at school and they see, oh, this person eats that or does that, or whatever, you get questions. And we've always tried to be just really honest and open with them and not try and take away a choice from them but educate them around why we at this stage in our lives feel it's appropriate for us to carry out certain activity or be mindful of something or eat a certain food. And thus far, they've been quite open to that. They never look at it as, "Oh, I can't have something," or "I'm doing something completely different."
 
I think kids are quite, they listen, they ask a question, you answer that question honestly and openly and they're just like, "Okay. Makes sense." That said, it is a challenge. They are children. Lockdown, I can't remember how many times they've asked, "What can I eat? What snacks? Are there any snacks?" And sometimes you can feel, I definitely did at the beginning. Like, "Oh, they're going to miss out on this stuff or the other." I think it can be a challenge sometimes to get them to eat a variety of food. When they were younger, it was easier. As they grow up, they start developing their own opinions about what they like and what they don't like.
 
We try to eat as much as we can, the same food at the same time, I think that's really helpful. I try and educate, our daughter is older and I think she understands quite a lot more about making healthy choices and understanding what's a healthy choice and what's not but having the choice to make that choice within the realms of what we eat. I think another thing, as a family, eating very similarly means we don't have food in the house that no one can't eat. So everything in the house is open to everyone. And I think that's really helpful. I think it would be a struggle if you had [inaudible 00:22:10] that were out of bounds for specifically children as well, because then they do feel like something's being pushed on them, but we're just quite open to anything. If they like something, they eat all of it, if they don't want something, then they choose not to eat that.
 
I try not to put too much pressure on food. I think there can be a lot of negative connotations around that, "You can't eat this. This is bad for you. This is really good for you." And just allow them to come to that experience on their own. When we make new meals, sometimes I might just sit and eat a new meal on my own and they might have had something else. And then actually they come over and they're like, "Oh, what's that? That looks really interesting." And then they'll try it, they'll be like, "Oh, next time. I'll have that." Without putting this pressure on, "You have to sit and eat this meal."
 
And that thus far has worked, they're not perfect at all. As I said, Alex is definitely the healthiest out of all of us, in terms of the foods, but they'll have crisps, there's plenty of vegan biscuits, but definitely not the healthiest choice for any children, but there are. And I think having that there as well, lets them know they're not missing out on anything and it's not something they have all the time. And if you restrict anyone from having anything, they want it more. So you keep it open. And they're very good at asking questions when they're with other people as well. Like, "Does this have this and that?" If they say, "Oh, it's got milk in it," or something, they're like, "No worries. I won't have that." It's not a big deal. And I think we're really fortunate with that. I imagine it'd be harder if they were 10 and we were all of a sudden sitting down and being like, "We're radically changing your diet."
 
Geoff Allix (23:54):
Yeah. That was more where I was at with my kids because they were that age. And I think that idea of just educating them, because so where my kids are at now, my son will be going off to university. So we'll have no control over what he eats. He actually is away Monday to Friday or was when he was at school. So then he could do what he wanted really, but they're educated into why you're doing this, but we are not scaring them and saying, "You are going to get MS." Because they still have a very low chance even as a family member, but it's like, "Well, even if you don't, this is good for you and you are massively reducing your chances of getting MS." And so just educating them and because I know that he's going away next year and he could eat any sort of rubbish.
 
Now there is an element. Yeah. Like as you say, Alex is the healthiest and I probably am in my family. I think he's certainly well aware of, he'll look on a packet and go, "Look, it doesn't have any dairy and it's no saturated fat." And I'm going, "Yeah, but it is entirely made of sugar and chemicals."
 
Leah Tsirigotis (25:14):
Yeah. Processed foods that you can't go buy off the shelf.
 
Geoff Allix (25:18):
It's like, there is an element of, "That's not good for anyone." So he sometimes gets that a bit wrong, but, then it's so much healthier than what I, I mean, I'd imagine what I ate when I grew up. And-
 
Leah Tsirigotis (25:29):
I often revert back to that and think I've got to where I am now, so I can only trust that my kids will do the same. And it's trust, but I think you're completely right. It's the education point. If someone understands why they're doing something or is informed about something, then they're making an informed choice. Whether that choice is the best choice or not, at least they know the outcomes of that. And for me it's, I try and teach the kids about connection to your bodies and connection to the food. So if you're eating something, let's take MS out of it. But if you're eating something and it makes you feel a certain way, so a negative feeling, like it makes you feel really bloated, you need to go lie down or it makes you feel sick or gives you a headache or something, connect with that and be aware of that and try and identify what it is that's doing that.
 
Certainly, if you eat something and it makes you feel like you've got loads of energy and gives you really positive side effects, recognize that as well. And you'll start making choices that work for your body as well. And again, I think that's probably one of best things as well, because the reality is all these processed foods and everything, they aren't naturally around. And I'm never going to say, "Actually, you can't eat this, this or this, because it's not a banana. It's not a whole food," but actually they'll start realizing, "Actually, do you know what? When I eat that I get the satisfaction immediately, but after I just feel really this and that, and then it means I can't go off and play with my friends in the park as I want to," or "I can't do this or I can't do that."
 
And I think that for me is the main thing to probably teach anyone, but definitely what I've been trying to go through with my kids, so that they just have that connection so that when they get older, whatever choices they make, they're making the right choices for them and their body.
 
Geoff Allix (27:20):
And on a more positive note, did you start to see positive effects of a healthier lifestyle for Alex and also for yourself?
 
Leah Tsirigotis (27:31):
Yeah. For Alex, it probably felt like a longer search. It felt like quite a long time to see benefits, I guess, of the whole program, but also food as well. So he was given an initial diagnosis by the neurologist. He then said, "Okay, well, we now need to go and do a few other different tests," lumbar punctures and all that, I think. But he obviously started OMS a few days after that initial diagnosis. And then as part of the next few steps, I think two months after, he had an MRI and it came back and it had two more lesions and it just felt like, "Oh, he's been doing this diet for two months and his lifestyle and he's got more lesions, it's really frustrating. It's obviously not working for him," and all of that.
 
And that felt really weird at the time. And looking back now, it's just quite clear that you can make a change overnight, but the effects of 30 years of the way that you've been treating your body, doesn't take a day, 2 months, 24 hours, maybe it can. Certain things do change very quickly. So it did feel like a really long time. And it was also clouded by the emotions of everything that was going on. But a year after that, he had an MRI and he had no new lesions. The year after that, again, no new lesions. In the third year, it was no new lesions. Plus some of the lesions had disappeared. And after four years, it was the same. And so it was like, "Oh, wow, this is doing something," but it can be frustrating in those first years, which feel like the longest ever, to see, I guess, pure science on an MRI.
 
In terms of physically and day-to-day, probably earlier than three, four years. I think the first 18 months were very up and down and tough. He in some ways became a lot fitter. He started running and really developed that and was getting, he wanted to use speed as a metric, was getting faster and faster as he was going. And so that was a really positive. He wasn't a runner before this at all. I think he'd done that one running event that I'd seen him at before and really struggled. And he started doing 5Ks, 10Ks, and then built himself up to marathon and then started doing a few marathons and was getting faster. And they were becoming easier to him. Before he used to run and then after he finished the run, he would just collapse and he would stop that collapsing and he might just need a few minutes to get his vision back and it would be good. So they were really positive steps that we saw.
 
Another thing that really helped, actually not necessarily direct to do with diet, but very OMS related was he went to a retreat in Austria, probably about two years after diagnosis. And that was hugely transformative. For him, it was a huge turning point mentally. And I think that his mindset really shifted. And I think that was quite a big burden that came off of him that had been pulling him down. Meeting other people in exactly the same or not exactly the same, but a very similar situation to you, who are approaching things in a very similar way. And seeing people who have just been diagnosed versus people who have been on this program and diagnosed for 10 plus years and seeing how different people are coping and managing. And that was really, I think, huge for him. I don't think before that he'd met too many people who either had MS or were taking an approach that he had taken.
 
And a huge level of positivity returned into his life. And I think at that point, life started really returning to, what I would say, normal, but a positive step forward where we weren't necessarily thinking about MS every single day. And all of that is just down to time. It's a huge mental challenge when you're diagnosed with something like that.
 
Geoff Allix (32:09):
I think that the community aspect's really important as well. That's not part of any programs, is not part of the OMS program that you need to have community, but when you're diagnosed, you're diagnosed as an individual or possibly with your family, but certainly not with other people with MS. And I know I don't see anyone else. I see my MS nurse and I see my neurologist. And so there's no form of... because it's private, isn't it? So you never go to a doctor and see, "Oh, here's the other people who've got flu." You see them on your own, so there's no community. And so you are on your own. And you live in London, obviously quite a lot of people there. And so even then, you're still quite isolated. And so who do you talk to?
 
That community has been really important to me, where you start to get, whether it's an OMS community or broader. And actually, because my neurologist runs weekly exercise courses and that's been really good there for people with neurological conditions, but we quickly work out who's got what. It is not just people with MS, because we've all got similar symptoms actually, but there's a sort of community there, but that's the only purely medical side where actually we have that group of people. So the OMS Circles have been really beneficial in that you actually have a community where I can talk to people. And they know what you're going through. Although I say it's unique to each of us, but we understand that as well. So there's an understanding there.
 
Leah Tsirigotis (33:44):
Yeah. And I think that was what, one of the first books we bought. We bought the original OMS book and then there was Recovering from MS, personal stories book. I think the OMS book with all the science was great because it really actually helped to understand, "Why am I doing this?" Which I think is really important to understand when anyone decides to start doing any change that they might struggle to stick with. It's actually understanding, "What is it that I'm doing this for? And what is it going to do to my body?" Otherwise, it's easy to just be like, "Oh, I don't see immediate changes," and therefore not continue. But the Recovering from MS book was just the perfect pairing with that book, because it put it into real life people, these people exist.
 
Some of the stories in there are people who've really been at rock-bottom at the point of diagnosis or even before they were diagnosed. And seeing their journey and the steps that they took and where they got to. And that was so positive in terms of reading that and thinking, "Okay, this isn't just some program that may or may not work that I'm just going to give a try. It's something where someone wasn't doing something, they were experiencing X and they started incorporating these pillars into their life and their life changed." And that was really, really helpful early on, when you didn't have a community of people to go and talk to. And to be able to read those stories and think, okay. It just gave you a level of hope and it helped that whole feeling of wanting to know what's going to happen in 3, 4, 5 years’ time from now. It suppressed that a little bit and he thought, "Well, actually, I'm just going to get on with this. And hopefully I'm experiencing similar things that hundreds of other people have experienced as well."
 
Geoff Allix (35:40):
So talking of books, the most recent Overcoming MS book, the Overcoming MS Handbook, which was this time edited by Professor George Jelinek rather than written by him. Or he's co-editor and has a number of different authors. And you are actually an author of a chapter on Prevention. So could you tell us a bit about your experience working on the project for that book?
 
Leah Tsirigotis (36:11):
Yeah. Yeah. Yeah. So I've written a personal story that goes alongside a chapter around family and MS and well, at least I think that's what it's called, I should know, but it's definitely to do with families. And then, I just woke up one morning to an email from George, inviting me to write a personal [inaudible 00:36:35] for this new book. And then it outlined everything about the book. And it was really interesting to read through the concept of the book and in its infancy at that point and see how it was designed to fit with the newest version of the OMS Handbook that I think came out towards the end of last decade.
 
And actually, the book I've just mentioned was one of the books that, the recovering stories and this felt like a good pairing with the new book in the same way that had felt like a brilliant pairing with the original version of the OMS book, which was to have people with MS writing these chapters from a personal perspective. That can be quite uplifting and helpful to people who are newly diagnosed or new to the program. And just looking for the hope and that kind of.
 
I was a bit skeptical as to whether I could deliver or live up to the pressure I was putting on myself to do with this. And I'm not sure I achieved that, but it was quite an overwhelming sense of responsibility, even just to write, I think it was 500 words or something. To get as much into that as possible, to just potentially connect with another husband, wife, partner, whoever of someone who's trying to hold it together for their partner, because maybe their partner's really struggling and they're like, "I've got to step up," but they need to know that there's other people out there who've experienced the same and what have they done and how have they come through it.
 
And as I said, I don't know that I achieved that necessarily, but it was a lot of pressure, but it was really exciting to be part of it and seeing emails going back and forth and seeing all the different people involved. They're all people from the community within OMS, who are living day-to-day with MS, all in different ways and all focused on their specialist areas as well, which was, obviously very honored to have been chosen or thought of but tried my best.
 
Geoff Allix (39:05):
And could you, just very quickly, because this could take up a whole episode, but so preventing MS. It's not a sort of on-off switch, but things you could do to prevent MS for family members. What would be some of the key things that would be worth considering?
 
Leah Tsirigotis (39:30):
I think education is a key one, which I know we've spoken a lot about. So really understanding MS and what it does to the body and what options there are in your control for you to be doing and understanding why you would do those. So I think being informed is really, really important. Understanding that genetics do play a part, but not everything. And I think, I don't want to misquote, but I always have this number in my head. So don't take this as a quote, please go off and do your own research, but I think it's something like genetics play a 30% part in the role of you potentially developing something that you are genetically predisposed to. So it's not everything. And the other 70% is everything else around that, which is basically lifestyle.
 
So if you have a family member that has MS and will take [inaudible 00:40:29] that this will be relevant for so many different conditions, depending on that family connection that you have, something like a sibling is probably one of the highest because you've got the closest genetic makeup, but if you have a parent and so forth, your risk of developing something like MS will be higher than potentially someone who has nothing within their family. Although I say that, we're not aware that Alex had any family in his, sorry, anyone in his family who had MS, that your risk will be higher, but knowing that that doesn't have to be everything. And so therefore I think this whole, which is the view that we took with our kids, is that, yes. Okay. MS is probably higher on the list than maybe something else for them.
And so therefore we're going to look at how can we help and support them to build a good lifestyle for themselves, including, not just food. And I think food gets looked at as the first piece, but our kids know how to meditate and they don't look at that as anything weird or obscure. Our daughter knows if she's getting stressed about anything or is feeling anxious about anything, exactly what she needs to do with her body to go do that. For her, she goes up and does 20 cartwheels. She knows that movement's going to help her do all of those things. And so we've just been, we don't sit down and teach the kids, but we just lead by example, specifically for our kids, but also food, just the way that we live our lives. And being active is really important for us.
 
Being mindful of the fact that they can go on, just like you said, your son's about to go up to university. So you are going to have very little control and maybe have had little control since he's been quite a bit older. I'm fully aware of that, but I'd like to give them a really strong foundation and platform to build on from the beginning and the education for them to understand any kind of condition. There's a lot of control that you can have if you go off and understand what's going on. And there's a whole load of benefits to specifically the OMS program, as we said at the beginning, on different conditions.
 
So I think heart disease is the number one leading killer in the world. Whole-food, plant-based diets are proven to support things like that, as well as lots of other different conditions that are out there. So, yeah. Sorry. I don't know if that necessarily answers your question, but I think education is always a really important part. And having someone understand that it's not just, like you said, "You can't have this," or "You should do that." Educate them as to why, is a really big thing for me.
 
Geoff Allix (43:04):
So Leah, thank you so much for joining us on the Living Well with MS Coffee Break, to let the community get to know you a bit better, but we have one last question which we have as a bit of a tradition for our Coffee Break guests. And that is specific with you. If you tap into your experience as being a spouse of someone with MS and part of a family of someone who adopted the OMS approach, could you share a piece of wisdom maybe for people who are newly diagnosed or newly following the OMS program, how you could make it easier to adopt the OMS program?
 
Leah Tsirigotis (43:45):
Yeah, gosh. Hard one, but I think taking it day by day and try your best and know that that will be good enough and don't put too much pressure or worry or overthink things too much. If one week you achieve nothing else but meditating for five minutes every day, that's a step forward from the week before. Next week, try and incorporate something else. And if you get to the end of one day and you've missed something or you ate something that you wish you had eaten, or you didn't intend to eat, don't obsess over it too much because the stress of doing something like that isn't worth it. It'd be worse than having gone off and eaten something incorrectly or missed the meditation anyway. And I think that's really important.
 
And probably the other side is just really understand and connect with why it is that you are doing what you're doing. So don't just do it because you've read in a book that's what you should do, do it because it feels like it's the right thing for you to do and understand the implications of doing it well. And then potentially doing 50% of it and make sure that you are happy with whatever choices that you're making with all of that. And start connecting with your body, it's condition, the symptoms that you're experiencing, how you respond to an activity or food, whatever it is, and how you feel with all of that.
 
And build your own individual OMS program that works for you. This is a guideline of things that you can do. So if you want to do something that's not on there and it feels good to you and you get benefits, go do it. If you try something that doesn't work for you, that is in the program, then you don't have to do it, but it's never going to be sustainable if you try and do something that doesn't feel natural. So always reconnect back to what feels right for yourself.
 
Geoff Allix (45:45):
Okay. Thank you very much for joining us, Leah Tsirigotis.
 
Leah Tsirigotis (45:47):
No. No, you're welcome. Thank you for having me.
 
Geoff Allix (45:51):
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 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 express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.

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.