Living Well with Multiple Sclerosis

Introducing lifestyle change to your HCP with Dr Mitzi Joi Williams | S4E9

Dr. Mitzi Joi Williams is a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who serves as the Founder & CEO of the Joi Life Wellness Group Multiple Sclerosis Center in Newnan, GA. Dr. Williams has spearheaded and participated in multiple steering committees and work groups to further research in underserved populations with MS with a focus on the African American population. Dr. Williams is the author of “MS Made Simple: The Essential Guide to Understanding Your Multiple Sclerosis Diagnosis.” She continues to live out her mission to provide personalized Multiple Sclerosis Care delivered with expertise, compassion, and joy. 
  
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
    
Topics and Timestamps:  
02:22 Your background is stellar. You have established quite a prestigious career as a neurologist and MS specialist. Can you share a little about your background as a medical professional?  
03:32 What inspired you to focus on MS in your training and practice?  
05:47 Let’s chat about Joi Life Wellness Group. That’s the MS center you founded and lead in Georgia. What are your core principles in this practice?   
06:57 Given that you see a steady stream of people with MS, you must encounter certain common obstacles people have in dealing with their diagnosis all the way to sound MS management and treatment. What are these in your view, and what’s your take on Overcoming them?  
09:41 As you may know, Overcoming MS promotes evidence-based lifestyle modification for better health and MS management. What’s your take on how lifestyle factors fit into treating MS? 
14:53 In your experience as a neurologist specializing in MS, what are some key strategies people with MS can use to discuss lifestyle factors and effective lifestyle modification with their healthcare professionals?  
17:06 What if someone encounters resistance from a doctor or other healthcare professional – how should a patient approach that, or handle that? 
21:57 Do you have any essential tips for people who are newly diagnosed and just entering the complex world of treating their MS in the medical arena?  
24:41 On another note, you’re also quite involved in researching MS’s impact on the African American community. There is much to learn about the prevalence and penetration of MS in different communities. Do you have any insights to share about your work to date?   
29:29 Finally, what is your vision for how you’d like your practice and work in the MS field to evolve and grow?    
  
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More info and links:     
Learn more about Dr. Williams’ practice, Joi Life Wellness Group  
Check out Dr. Williams’ Facebook alter ego, The Nerdy Neurologist  
Follow Dr. Williams on Twitter  
Learn more about Dr. Williams’ professional background on LinkedIn  
Watch some of Dr. Williams’ informative videos on her YouTube channel  
New to Overcoming MS? Visit our introductory page  
Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website    
Follow us on social media:  
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Don’t miss out:  
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. 
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.
 

Coffee Break with community member Linda Boueke | S4E8

Welcome to Living Well with MS Coffee Break, where we are pleased to welcome Linda Boueke as our guest! Linda in an artist and singer who lives in Hamburg, Germany and follows the Overcoming MS program.  
   
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
    
Topics and Timestamps:   
02:24 Can you tell us a little about yourself, where you live and anything about yourself, you’d like to share? 
03:25 How about your experience with MS? Could you tell us a bit about when you were diagnosed? 
05:25 At which point did you come across the Overcoming MS Program?  
10:07 What are some of the challenges you faced at first in adopting the Overcoming MS Program, and how did you overcome them?  
12:17 When did you first start to see any kind of positive results in following the Overcoming MS Program, and what were these?  
15:13 You’re the ambassador of the Overcoming MS Circle in Hamburg. Can you talk to us about the Overcoming MS Circles experience, and what that’s meant to you?  
18:32 You conduct seminars about Overcoming MS principles in Germany, trying to raise awareness about the positive aspects of lifestyle change for people with MS.  
20:51 One of your guiding principles is the concept of flow. Can you tell us a little about that and what it means to you? 
25:40 That’s a good segue into things in your life in which you find “flow”, such as singing and dancing. Can you share a little more insight into your creative passions?  
28:04 If you tap into your experience with MS for a nugget of wisdom that would help people ease into and better adopt the Overcoming MS program, what would that advice be?  
  
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.          
More info and links:     
Linda loves this healthy vegan brownie recipe 
Linda also loves these two vegan pasta recipes from Deliciously Ella and The Happy Pear 
Check out Linda’s artwork on her website 
Hear Linda’s vocal talents on her Facebook, YouTube, Instagram 
Linda does Zumba at home for exercise by watching these uplifting YouTube videos by Euge Carro 
New to Overcoming MS? Visit our introductory page  
Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website    
 Follow us on social media:  
Facebook  
Instagram  
YouTube  
Pinterest  
  
Don’t miss out:   
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS 
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Exercise tips for all abilities with Dom Thorpe | S4E7

Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother, who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on his mother. He’s the creator of The MS Warrior Program, which has been completed by over 1,000 people with MS since its launch in 2018. 
  
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
    
Topics and Timestamps:
02:00 Can you tell us a little bit about how you became a fitness trainer?  
03:42 What are you doing now in the fitness space? Tell us about your online fitness enterprise.  
06:58 One of your target audiences are people with MS. Do you have any personal connection to MS?  
13:12 Overcoming MS promotes evidence-based lifestyle modification for improving health with MS. And one of the pillars of that is exercise. How does increasing exercise and movement correlate to improvements in MS symptoms? Do you see improvements in clients? 
17:17 Tell us a bit about your MS Warrior Program. Does it suit all levels of ability?  
22:23 How do your programs deal with different ability levels? Because you're getting from wheelchair users to people who can run. 
25:10 If you could distill your fitness expertise into 3 key tips for people with MS of any ability who want to develop some sort of regular exercise or movement regimen, what might these be?  
  
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.          
More info and links:     
Learn more about Dom’s fitness training programs, including the MS Warrior Program here  
Access free MS Fitness Essentials here  
Check out Dom’s work on Facebook and Instagram  
New to Overcoming MS? Visit our introductory page  
Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website    
Follow us on social media:  
Facebook  
Instagram  
YouTube  
Pinterest  
  
Don’t miss out:   
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS 
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Ask Jack: Egg and chocolate replacements | S4E6

Welcome to Ask Jack, featuring the prodigious culinary talents of professional holistic chef Jack McNulty answering food-related questions generated by you, our community. Submit your questions for Jack by emailing them to podcast@overcomingms.org.   
 
In this episode Jack discusses healthy alternatives to eggs (especially the yolks, which are not recommended on the Overcoming MS program), and chocolate.  
   
Topics and Timestamps:   
02:55 Do you have any tips on making a tofu scramble?  
10:32 How do you replace eggs in cake recipes?  
15:11 One of our listeners wanted to know how much egg white is needed to replace a whole egg.  
20:42 Is there is a healthy substitute for egg replacers like Just Egg, which is the closest thing she’s found to scrambled eggs. However, she’s concerned about some problematic ingredients in it, like a whole bunch of canola oil, and the high temperatures required to cook it. 
23:43 Is it possible to make an Overcoming MS-friendly custard? I would really love to know how to make a quiche and custard dessert for my family.  
31:12 Can you explain how to use aquafaba?  
35:48 I have a lot of chocolate cravings and I’m looking for Overcoming MS-friendly ways to satisfy them. Do you have any recommendations?  
38:54 Can I replace chocolate in a recipe with cacao/cocoa? How?  
40:33 On cacao nibs, are they fine to use? 
44:02 Finally, Jack, our whole community is excited about the imminent launch of the latest Overcoming MS book, The Overcoming Multiple Sclerosis Handbook, which has numerous contributing editors, yourself among them. What can you tell us about the project and your role in it?  
   
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.             
More info and links:      
Visit Jack’s website myfreshattitude.com for Overcoming MS-compliant vegan recipes. 
Check out Jack’s weekly newsletter, VeganWeekly on healthy plant-based food 
Connect with Jack:  Website | Instagram | Twitter | Facebook 
New to Overcoming MS? Visit our introductory page  
Connect with others following Overcoming MS on the Live Well Hub  
Visit the Overcoming MS website     
Follow us on social media:  
Facebook  
Instagram  
YouTube  
Pinterest  
  
Don’t miss out:   
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. 
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Coffee Break with community member Chris Cerillo | S4E5

Chris Cerillo was diagnosed with MS in 2017, and that’s when she really decided to live her life how she wanted to. It really drove home – with the spectrum of types and prognoses – that anything can truly happen in life… we never know. So soon after this huge upheaval in her life, she began to look at both what she had to do now (like eat healthier and exercise) and what she wanted to do.   
On this episode of Living Well with MS, we are pleased to welcome Chris Cerillo. So many things have happened in the past four and a half years after diagnosis that she became a different person. She is still the same in some ways, of course – a crazy cat person and a Special Olympics volunteer for instance – but she has changed fundamentally. The way she views life, with joy in the day to day and making sure those she loves know it, is now her core. Chris honestly can say that she is glad to be diagnosed with MS.  
  
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
 
Topics and Timestamps:
02:35 Can you tell us a little bit about yourself and your life in Connecticut? 
04:56 When you were diagnosed, and how you dealt with that? 
10:46 What tips do you have for people newly diagnosed on how to deal with it? 
12:04 Did you come across Overcoming MS straight away or was it a while after your diagnosis? 
15:59 Have you found differences since you've been following Overcoming MS? Has it made a difference? 
17:10 Vegan January or Veganuary, is where they try and encourage people to be vegan in January. Have you tried it?  
20:47 Did you have any problems adopting the Overcoming MS program? You said you were vegan already, but what were the main obstacles to adopting the lifestyle? 
24:15 Talking about stress, you've got experience in dealing with big life decisions and how that affects your MS. In your case, you decided to come out about your sexuality publicly. How did you manage to deal with that? 
28:02 There are all sorts of big things that happen in life. Dealing with those things, would you say that it is that friendship group, or are there specific things you think are particularly useful to deal with big traumatic decisions and changes? 
29:32 There are obvious positives for you because you're living life as you want, but in terms of your family and friendship group and things like that, have there been positives to that side of things as well? 
32:39 One thing I want to ask is how you live life to the fullest as someone with MS? 
34:40 What would you say to someone who's thinking, "Well, I'm not sure whether I do that, or make this change?” What would you say to encourage people to make that leap? 
35:34 As a final question, can I ask what else is on your bucket list for a full life? What's a big bucket list thing? 
 
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.          
  
More info and links:     
Reach Chris’s blog on living despite the unknown here  
Check out Chris on Twitter  
Chris recommends finding and joining your local Overcoming MS Circle and the Live Well Hub for support  
Chris wants anyone in the USA who is LGBTQ+ and struggling to know that they can text or call The Trevor Project (which is a nonprofit and totally free) by texting START to 678-678 or calling 1-866-488-7386  
New to Overcoming MS? Visit our introductory page  
Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website    
Follow us on social media:  
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Instagram  
YouTube  
Pinterest  
  
Don’t miss out:   
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. 
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Coffee Break with community member Claes Nermark | S4E4

Welcome to Living Well with MS Coffee Break, where we are pleased to welcome Claes Nermark as our guest! Claes lives in Sweden and follows the Overcoming MS program.  
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
    
Topics and Timestamps:
01:57 Can you tell us a little about yourself, day-to-day life, and anything about yourself, you’d like to share?   
02:29 How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it? 
10:31 At which point did you come across the Overcoming MS program?  
16:54 You mentioned you had a very stressful life. How do you manage stress now that you've been diagnosed? 
21:56 What are some of the other challenges you’ve faced at first in adopting the Overcoming MS program? 
24:12 When did you first start to see any kind of positive indicators in following Overcoming MS guidelines?  
29:06 You're the ambassador for the Overcoming MS Circle in Sweden so could you tell us a bit about the Overcoming MS Circle there? 
31:27 You contributed to the newly published Overcoming Multiple Sclerosis Handbook. Could you tell us a bit about your contribution to that? 
34:18 If you tap into your experience with MS for a nugget of wisdom that would help people ease into and better adopt the Overcoming MS program, what would that advice be?  
  
Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips.          
More info and links:    
Check out Claes’s profile on LinkedIn, where he posts a weekly video in Swedish 
Claes likes Brain Tools for Teens on Instagram 
Claes also likes Mind Valley, a global platform for personal development 
New to Overcoming MS? Visit our introductory page 
Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website 
Follow us on social media:  
Facebook  
Instagram  
YouTube  
Pinterest  
  
Don’t miss out:   
Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.
Support us: 
If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Hello 2022, Hello OMS Handbook with George Jelinek and Sandra Neate | S4E3

More than 21 years since Professor George Jelinek published ‘Taking Control of MS’ (2 editions), followed by the first edition of ‘Overcoming Multiple Sclerosis’ in 2010 and the second edition in 2016, Professor George Jelinek is back with the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We are pleased to welcome back Professor George Jelinek, creator of the OMS program and one of the three editors of this new, highly anticipated book. We also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book.   Prof. George Jelinek’s Bio:   Professor George Jelinek is the founder of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne and Honorary Professor at NEU. The NEU's charter is to investigate the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive medicine approach to management of the disease.   Professor Jelinek specialized in emergency medicine, winning the prize in the first specialist examinations in 1986. He is a past President of the Australasian Society for Emergency Medicine (ASEM) and past Vice President of the Australasian College for Emergency Medicine (ACEM).   He was the first Professor of Emergency Medicine in Australasia and was the founding editor of the journal Emergency Medicine Australasia, a MEDLINE-indexed journal that he has edited continuously for nearly 30 years. For his contribution to emergency medicine, he was awarded the ACEM Medal in 2003, the highest individual honor in the specialty of Emergency Medicine in Australia and New Zealand. The College for Emergency Medicine also awarded him the 2006 John Gilroy Potts Award and the 2012 and 2014 Edward Brentnall Awards, for the best publications in emergency medicine and public health respectively in those years.   Recognizing his contribution to both emergency medicine and multiple sclerosis, Professor Jelinek was a Western Australian finalist for 2008 Australian of the Year, and a Victorian Finalist for the 2016 Australian of the Year.   Most recently, recognizing his leading role in MS epidemiological research and strong background in medical journal editing, he was appointed Chief Editor in neuroepidemiology for the leading MEDLINE-indexed neurology journal Frontiers in Neurology, ranked in the top 16% of the top tier 192 neurology journals indexed with Thomson Reuters.     Professor Jelinek is the author of ‘Overcoming Multiple Sclerosis’ and one of the editors (along with Associate Professor Sandra Neate and Associate Professor Michelle Donoghue) of the newly published the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’.   Associate Professor Sandra Neate’s Bio:   Associate Professor Sandra Neate is a Senior Principal Clinical Research Fellow and the Head of the Neuroepidemiology Unit. She has also been a facilitator on Overcoming Multiple Sclerosis events.    Sandra completed her medical degree at the University of Melbourne in 1985. Sandra went on to train as a Specialist Emergency Physician with the Australasian College for Emergency Medicine working as an emergency physician for 20 years at St Vincent’s Hospital Melbourne. She has also worked at the Coroners Court of Victoria since 2010 and on the Victorian Mental Health Tribunal since 2015.   Sandra’s interests moved towards research, and she has published in areas regarding coronial matters and family experiences of organ donation. She commenced at the Neuroepidemiology Unit, along with George, in 2015 and now leads the team and their major research projects, the HOLISM study, the STOP MS study, investigating the outcomes of people who have attended residential lifestyle modification workshops, and the Multiple Sclerosis Online Course trial among others.   In 2021 Sandra and George won the Melbourne School of Population and Global Health Engagement Award in recognition of their work and research with the MS community.   Sandra is one of the editors, along with Professor George Jelinek and Associate Professor Michelle Donoghue of the newly published ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’.   Questions:   Professor Jelinek, or may I call you George, so wonderful to have you and Associate Professor Neate on the podcast again. First and foremost, since we haven’t had you as a guest on the show in a while, can you fill us in on what you’ve been up to these past few years? George, can you tell us a little about the new ‘Overcoming Multiple Sclerosis Handbook’ and how the project came together and to fruition? Neate, or may I call you Sandra, how did you become one of the three principal editors, along with George and Associate Professor Michelle O’Donoghue? George, what are the main differences between this new handbook and the original editions of ‘Overcoming Multiple Sclerosis’? Sandra, anything to add to that? Also, Sandra, I understand this new book is a collaboration with many different contributors from around the world. Was that hard to manage and what did it add to the project? George, have there been any promising developments over the past few years that you’ve either tracked or somehow been involved in that provide further support or evidence to the efficacy of the OMS approach to lifestyle modification for managing MS? Sandra, from the NEU perspective, where you serve as head, how does this new book add to the arsenal of ways in which you’re trying to advance lifestyle modification therapy for people with MS? George, how do you recommend people use the new book? Is it more for a particular audience, such as newly diagnosed? Question for either of you: how does one get the book? Is it out now? Sandra, any final thoughts or words of encouragement for the OMS community? George, one final question for you: Overcoming MS the charity is celebrating its 10th year in 2022. What is your anniversary wish for OMS? Thank you, Professor George Jelinek and Dr. Sandra Neate, for joining us on this special episode to announce the publication of the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We encourage everyone listening to read the book. Information on how to get it is available in our show notes. And thank you both for all you do to keep advancing the mission of OMS and the benefits of lifestyle modification for all people with MS. I hope you both have a happy 2022!   Links:   Get directed to where the new Overcoming Multiple Sclerosis Handbook is being sold in your area   Coming up on our next episode:   On the next episode of Living Well with MS, join us for the next installment of our Coffee Break series, where we meet Claes Nermark, a health coach, personal trainer, and the first OMS Circle ambassador in Sweden. Premieres February 14, 2022 on your favorite podcast platform.   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.   S4E47 Transcript Hello 2022, Hello OMS Handbook   Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast or in whichever podcast platform you used to tune in to 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.   Geoff Allix (47s): 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. More than 12 years since the first edition of Overcoming Multiple Sclerosis was published and six years the release of the second edition, Professor George Jelinek is back with the Overcoming Multiple Sclerosis Handbook: A Roadmap to Good Health. We are pleased to welcome back Professor George Jelinek, creator of the OMS program, and one of the three editors of this new highly anticipated book.   Geoff Allix (1m 32s): We are also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book. Welcome back, Professor George Jelinek and Associate Professor Sandra Neate. Could I call you George and Sandra?   George Jelinek (1m 54s): Yes, of course, Geoff.   Sandra Neate (1m 55s): Of course, yes.   Geoff Allix (1m 56s): Welcome back to the podcast.   Sandra Neate (1m 57s): Thank you.   George Jelinek (1m 58s): Thank you.   Geoff Allix (1m 59s): George is the founder of the neuroepidemiology or NEU unit at the School of Population and Global Health at the University of Melbourne. I will avoid saying that again. So, if I'm about to say it, I'm just going to say NEU. Okay?   George Jelinek (2m 20s): It's quite alright.   Geoff Allix (2m 23s): It's quite big news with the launch of a new book, and it's wonderful to have you back on the podcast. First and foremost, since we haven't had you as a guest for a while, can you fill us in on what you've been up to for the past couple of years?   George Jelinek (2m 38s): Well, I think people may be aware that I retired in October 2019, which seems like a lifetime ago after all the events that have transpired since the start of 2020. I certainly planned a different retirement than I'm finding myself in with COVID, but I guess, one of the important projects and a really big project in that has been this book, which has really taken a couple of years to get together and get to the stage now where it's about to be released. I had had other plans. I'd had plans for travel.   Geoff Allix (3m 19s): I was going to say were you planning on traveling? That probably didn't go too well.   George Jelinek (3m 24s): No, that went out the window a little bit. We've done a few small trips whenever windows of opportunities have opened up, but Australia's had its particular response and it's been very hard to go anywhere really. The other thing, I guess, that I've enjoyed doing, and I was planning to do in retirement anyway, was do more of my writing and recording of music, which, as a young man, I used to do quite a bit of recording on a reel-to-reel type deck. Now, with digital stuff, a blank canvas opens up with all these techniques that you can use that I never had access to in the past.   George Jelinek (4m 8s): I just laid down track after track, putting down little various instruments, then singing, putting the harmonies on, putting the drum track on, and so on. I've put probably seven or eight songs down during lockdown to the stage where they're ready to be released. I'm pretty happy with that little endeavor. It's been good fun.   Geoff Allix (4m 28s): The future might be rockstar George Jelinek, previously known as your epidemiologist.   George Jelinek (4m 34s): Well, I think a very small audience. Possibly family and close friends might be down.   Geoff Allix (4m 41s): Could you tell us a bit about the new Overcoming Multiple Sclerosis Handbook, and how the project came together and came to fruition?   George Jelinek (4m 53s): Well, listeners might not be aware that it is actually when Sandra and I were in the UK in the middle of 2019. You might recall we came over for the big Edinburgh event at that time. In fact, I think you interviewed me and Sandra at the end of that day. We went out to London after that and met with the board of trustees. One of the things that was high on their list of priorities was to look at updating the OMS book, whose second edition came out in 2016, and they thought it would be good to get a new offering out there for the OMS Community.   George Jelinek (5m 38s): I was very resistant to the idea, really very resistant. I'd seen that last book as the last thing, the last big project I would do in writing, but Sandra and I talked about it. The more we talked about, the more we thought, "Actually, this is a really good opportunity, a very different opportunity than me writing a book. Why don't we get a whole range of contributors from across the OMS community worldwide to write it, not only their experiences but the skill and wisdom they've distilled over quite often long periods following the OMS program, adhering to the program, and get that into a big volume?”   George Jelinek (6m 27s): Then it has a consistent theme and feel to it. Sandy and I were initially the editors of the book, and then we felt that we probably should broaden that a little. We asked Michelle O’Donoghue, who is a Harvard cardiologist who's been on the program for about 10 years and whom we met in Boston during the US tour back in 2016, to be a co-editor with us. That project really has taken a couple of years. We had to recruit that big group of people. There are 19 content chapters in the book, and every chapter in the book, bar a couple, is followed by a personal story from someone else from the OMS community.   George Jelinek (7m 16s): It was a short story of their experience, usually trying to relate it to the particular content of that chapter. Then each chapter is also introduced by an inspirational quote from someone else in the OMS community. We've got around about 50 different OMS voices, all pitching together about the program, how to adapt, and how to adhere to it. What are the tips and traps around the program? What their experience might do in helping to illuminate the pathway for people with MS.   Geoff Allix (7m 54s): Would people treat it as a companion guide? It's not a new edition, is it? It's a companion to the Overcoming MS main book.   George Jelinek (8m 4s): Yes, they're two very different books. The last book was me, really my own voice, and trying very hard to put all the complex medical literature into lay language, to make a strong case for why the OMS program should be adopted. At times, looking back on it, I think I was more or less successful in that. Some of the science is a bit obscure and a bit hard to explain, but it seemed to hit a chord with a big portion of the OMS Community. A lot of people have adopted it but one of the constant bits of feedback we got was that it wasn't really all that clear on how best to adopt it.   George Jelinek (8m 53s): This book really is that part of the jigsaw. As you said, it's a companion. It's not a research-based book so even though it's based on the program, which is, in itself, research-based, it's not a book that's full of references. It's much more full of the personal experience and wisdom that each of these people in our community has got. Many of these people are really well known to our community. People who've been OMS facilitators, people who appear on your podcast series, people who have done cooking demonstrations for OMS, people who range in profession from chefs to psychiatrists, to general practitioners, family medicine doctors, to psychologists, to astronomers.   George Jelinek (9m 49s): We've got a whole range of people in there who speak from their experience. That's the flavor of it. That's the thing that we're really happy about that it's no longer this single voice, which is always problematic because it just really reflects my views and has become very ingrained. It's nice to see a whole lot of other people tell us their views and what they've found easy, what they've found hard, how best to get over some of those obstacles, and so on.   Geoff Allix (10m 25s): Sandra, how'd you become involved as one of the principal editors of the new handbook?   Sandra Neate (10m 31s): I was there at this meeting in 2019 that George referred to in London and I think when it became clear that George didn't want to rewrite the Overcoming Multiple Sclerosis book as we discussed we came up with this idea of something different. One of the main reasons we wanted to make it different was to, what we call future proof the book. Meaning that because the other book is full of hundreds of references, it really needs to be kept up to date. You need repeat additions so that the book doesn't become out of date. We planned this book to be future-proofed, meaning that it wasn't full of references to the medical literature.   Sandra Neate (11m 13s): It was peoples’, as George said, distilled wisdom. The idea was really germinated between the two of us and working at the university, I had a six-month sabbatical coming up in 2020 so this was my proposal as part of my sabbatical, to use three periods of two months that I had to, first of all, work together to recruit the authors and then edit the chapters that were coming in. We did it over the year really of 2020 and 2021 so seems like a long time ago now. That was my role, and it was a joint venture.   Sandra Neate (11m 56s): George, obviously, had a lot of them within the community and he kept a track of all the authors and followed them up, et cetera. Then he, Michelle, and I edited all the chapters jointly, Michelle from over in the US with a newborn baby. She did as much as she possibly could and always added a voice of calm reason and a different perspective to the things that we thought. She had a new perspective to add to what we commonly think, which was a wonderful addition. That's the way it evolved and played out. It's been a really rewarding experience because we're very proud of what we've produced, but the people who were involved in it, of course, were very involved and very keen to see the end product.   Sandra Neate (12m 47s): They definitely feel they have an enormous stake in it, and they do. That's a lovely feeling that it's a joint venture and a product that's been made by many people, like-minded people.   Geoff Allix (12m 59s): Was it hard to manage people around the world? How did that work? They've added to the project, and you mentioned different voices like Michelle.   Sandra Neate (13m 12s): Yes. Well, the three editors, we stayed apart from all the chapters, but really, we just sent out invitations saying, "Would you be interested in authoring the following chapter?" People were incredibly keen and helpful. There wasn't much that we needed to do to entice people to become involved. Yes, there were one or two people who were always a little bit late to meet their deadlines, but in general, everyone had their work back when was asked. It was an amazing thing. Really, they're all wonderful. It varied between the amount of editing that was required between chapters. Some required some work just to get them down to word limits and those sorts of things, but in general, it was a fairly easy task to get everyone to meet the chapters.   George Jelinek (13m 59s): These are people who are incredibly well motivated to get this message out. As we were saying, many of them have been facilitators, many of them have done a lot of work for OMS, raise funds for OMS, and so on. Their hearts were most definitely in the right place and they're very keen to be involved enough. I've got to say, some of the chapters came back, they just blew our socks off. We were really quite amazed at the quality of the work, but also the depth of insight that these people had developed. Some of them have been on the program now for 10 to 15 years.   George Jelinek (14m 41s): In that time, they may or may not have interacted terribly much with us, but they've clearly worked out their own ways of doing this. The chapter by Jack McNulty, for example, who I know has been on your podcast, but his chapter on food – I was just astounded at the quality of that one.   Sandra Neate (15m 6s): I think the thing is too, some of the authors, being on the program for a long time, some of them have their own specialty, as in their medical specialty or their own professional specialty that, of course, has shaped their view of the program. They have perspectives that we didn't have, things that we'd never thought of because we've been doing the same work for a long time and it's progressed and evolved, but to hear a psychiatrist with MS talk about mental health is a really interesting novel thing because, although we know Keren Taylor very well and she's worked with us, to hear her written perspective on the whole thing was incredibly enlightening.   Sandra Neate (15m 47s): George has mentioned a number of other chapters. Phil Startin, who wrote the progressive MS chapter, who's lived with progressive MS for years, had some amazing insights into progressive MS, and amazing facts, figures, attitudes, and ways to adapt the program to it. It's this new perspective and insights, professional and personal insights that were really useful.   Geoff Allix (16m 17s): George, is there anything that you've come across in the past few years that maybe you've just been aware of or been involved in that has further supported the evidence for the efficacy of the OMS approach to lifestyle modification for people with MS?   George Jelinek (16m 40s): Well, actually, Geoff, it astounds me the degree to which the ongoing research effort around the world into the lifestyle risk factors in MS has validated the program. I've actually been astonished when you see work come out from NARCOMS, for example, the North American Research Committee on MS, publishing in Neurology, the leading neurology journal pretty much in the world about their large data set of North Americans with MS and confirming the findings of our HOLISM study, that the higher quality diet, the less disability, the fewer relapses, the better quality of life, and so on.   George Jelinek (17m 31s): Then that's equally supported by the UK MS Register, by the Dutch MS Society publication, and of course, our own HOLISM work. We keep publishing on that and we're up around 40 to 50 papers now in the mainstream major medical journals. They haven't contradicted really any of those things that came from a detailed systematic review of what was available originally at the end of the last century in the medical literature. That's where the program had its genesis.   George Jelinek (18m 11s): The thing that 20 plus years on, the research continues to come out to support that and strengthen those pillars. I just find it amazing really to think back then there was enough there to be able to put a program like that together over 20 years ago, and then not to have it crumble, not perhaps a couple of big studies come out to say, "Look, there's nothing in the diet. The vitamin D connections are nonsense," or whatever. I've almost thought, "Well, one of those is going to come along and half expected it," and they haven't appeared in the literature.   George Jelinek (18m 54s): I have to say, it's very reassuring for people who are on the program to know that. The science keeps getting better and better and there are better and better teams working on these larger and larger data sets from around the world. You can be reasonably confident if you're on the program, that the science is evolving to further support the OMS program.   Geoff Allix (19m 24s): I think actually from my side, the neurologists are starting to come on board. Aaron Boster in the United States is a big proponent. He's been on the podcast a couple of times, and he's now involved in OMS, but just like my neurologists, five or six years ago, they were really unaware of lifestyle factors. Now, most of them have, at least, an awareness. Really, it's not rocket science in many ways - eat healthily, do some exercise, look after your mental health. This isn't a crazy thing that we're talking about.   Geoff Allix (20m 6s): We still, technically in the UK, have dairy as a food group. You have to say to people on the whole like "Actually, no animal on earth has breast milk as an adult." They start thinking, "Yes, maybe it isn't that normal.   George Jelinek (20m 24s): Yes, especially in other species.   Geoff Allix (20m 29s): Yes, that's very weird indeed. Then you think, "Actually, yes, it isn't an odd thing you're doing. It's actually just a very healthy lifestyle." Actually, I've come across people with other autoimmune conditions like rheumatoid arthritis, Parkinson's, cancer, who've all had similar recommendations, not identical, but very, very similar. You're thinking if there are organizations in those areas, they're all saying, "Eat a largely plant-based whole food diet, do more exercise, and look after your mental health,"   Geoff Allix (21m 10s): then there's definitely something in this too.   George Jelinek (21m 14s): Yes, and I guess the other side of that is that you have to continually remind yourself that it's not a program that comes with any risk. It's a risk-free program. Even if the literature had been published to show that it wasn't particularly effective in MS, at the very least, you can be confident that you wouldn't get any of the other conditions like cardiovascular disease to the same extent. In an indirect sense, even if something did suggest it wasn't that helpful in MS, you know you're helping indirectly the course of MS by adopting that really healthy lifestyle.   Geoff Allix (21m 56s): Yes. That's exactly what my neurologist said. In the first meeting, I presented the book and said, "What do you think?" He referred to it as the Jelinek method, I think he called it. He said, "Well, there's no proof that will do anything for MS," which I think they have to say really. They're in the national health service. They can't go off message. I think probably they might get into legal issues. There isn't proof. It's not a proof thing, is it? In fact, there are no proofs in medicine. I think you need mathematics to prove.   George Jelinek (22m 37s): That's another podcast, isn't it? Let's discuss the concept of proof in medicine and I'll tell you, that's a very slippery topic.   Geoff Allix (22m 46s): He said, "But it's going to lessen your risk of heart disease, cancer." He went through a whole long list of things so he said, "Ultimately, if you're happy to do it, then I would absolutely recommend you do it because it will just improve your health."   Sandra Neate (23m 2s): I would be very happy if one day, they could make the leap and stop saying, there is no proof and say, "Look, there is a lot of evidence to support this lifestyle in many illnesses and go for it.”   George Jelinek (23m 16s): Yes, and we're working on those as a charity. I think that's one of the next big challenges for the charity now that it's got a new board chair. I think a key aim is to work out a strategy for approaching the profession in a way that will keep them on side so that they feel comfortable recommending this kind of lifestyle. Actually, one of the things about this book is that it's the perfect thing for a doctor to hand one of their patients with MS because it just lays out the prescription so beautifully in such an easy way to follow that would save them an enormous amount of work trying to go through the explanation about the diet and so on.   George Jelinek (24m 8s): It's all there. It's just such a handy little companion to adopting something like this in life.   Sandra Neate (24m 14s): Would you recommend it more for newly diagnosed or is there a particular audience in mind?   George Jelinek (24m 22s): I think it's anyone at any stage of the illness. We've been very deliberate in not just discussing the seven pillars of the program, but in broadening that very significantly. For instance, Rebecca Hoover from Minnesota talks about the issues around work discrimination for people with disability, what kind of options are open to them. Greg Herndon from Northern Ireland talks about disclosure, how, and when, and who to tell the diagnosis to. Rachael Hunter from is Swansea talking about resilience, which applies, of course, to any stage of the illness.   George Jelinek (25m 9s): As Sandra said, Phil Startin got some amazing insights about the journey that people who have progressive forms of the disease and find themselves undertaking. We're very keen that this is a very inclusive, much broader-based book that deals with many of those issues that people might only be becoming aware of much later in the disease's course.   Sandra Neate (25m 33s): Also, issues that are actually extremely common, such as pregnancy. The majority of people with MS are young women and rarely do they get the opportunity to talk about pregnancy, childbirth, and the neonatal period managing newborn babies and how to deal with families and relatives, and things like that. Things that are actually very common, but not commonly discussed. We hope that by broadening out from the seven pillars, there's some really useful information there, no matter what stage of the journey they're on and whether that's newly diagnosed, 25 years into the illness, or longer.   George Jelinek (26m 16s): Sandra, from an NEU perspective, how does this new book add to the ways in which we're trying to advance lifestyle modification therapy for people with MS?   Sandra Neate (26m 33s): Well, it's a highly valued publication and, in any research, the publication is what counts. George and me, because of our involvement in the book, we were awarded the Melbourne School of Population Global Health Engagement Award for the contribution that this made towards engagement with our MS community and, in their mind, with our research subjects from an academic perspective, it's highly valued that researchers engage with the participants in their research. They involve them at all stages of research, before research, during research, after research, report back to them.   Sandra Neate (27m 18s): They love the way The NEU engages with the MS Community. They highly value that so that in itself is a really important contribution that the book has made to the unit. We are a very small unit. There's really, at the moment, only five of us and a couple of students, so a major publication like this is extremely important to the unit. Really, although the rest of the team weren't directly involved, all the subject matter is what we're involved with on a day-to-day basis in our research and the HOLISM study and all those sorts of things.   Sandra Neate (28m 0s): It's a very important publication for the university. The university highly regards it, and the NEU has benefited from that.   George Jelinek (28m 10s): To either of you, when is the book out and how do we get hold of it?   George Jelinek (28m 16s): First of February 2022, so we're there now and in the year that it's being released. We've only got to wait another few more weeks. It's been really, simultaneously, in the UK, US, and Australasia. Really, as I say, in all good bookstores and all book websites. You can get it on Amazon, on Booktopia, all the usual places, and it'll be freely available soon. It's only available for pre-order at the moment.   Sandra Neate (28m 53s): I think, actually, from when this podcast airs, I'd say it's out now. We're recording this a couple of weeks early.   Geoff Allix (29m 08s): Sandra, are there any final thoughts or words of encouragement for the OMS community?   Geoff Allix (29m 14s): Yes, always. We're working hard on lots of interesting projects. Did you mean from our research, from our unit's perspective?   Geoff Allix (29m 19s): Yes. Just for the OMS community, is there anything upcoming? Is there anything that you think they should be doing? Just a final thought to the community.   Sandra Neate (29m 34s): Well, we're engaging more and more with other collaborators around the world to enhance our research, and all the things that they're all doing, and to understand further the benefits of the OMS program. We're working on an online course that will be there in the future for their use once we've tested that and made sure that it's working well and that it’s effective in achieving what we hope it will achieve. That hopefully will be released around another year or so. It's a very slow process, all these things, but everything that we're doing is there to understand further and hopefully support all the efforts the OMS community is making to manage their own health.   Sandra Neate (30m 22s): The more work we do, the more we understand that people who take control of their health, who feel the empowerment to make changes in their lives have improved mental and physical outcomes so there's no downside to this. We're just hoping to find more and more evidence that this is the case for the people in the program.   Geoff Allix (30m 52s): George, one final question. Overcoming MS is celebrating its 10th anniversary this year in 2022. What is your anniversary wish for OMS?   George Jelinek (31m 03s): Well, I think for me, what I always hoped was that we would ultimately reach the mainstream professional community so that if a person is diagnosed with MS, then, in the same conversation as the diagnosis, it offered a suite of things that they can do for themselves that are evidence-based and that they can adopt with confidence that their neurology team, their general practitioner, their MS nurse, that professional community is right behind them in the things they're doing for their own health. Twenty years ago, that seemed like a bit of a long, distant goal. It's still, possibly, some way off, but that's what I hope the OMS charity achieves over its next 10 years.   Geoff Allix (32m 0s): Thank you very much, George and Sandra, for joining us on this episode to announce the publication of the Overcoming Multiple Sclerosis Handbook: A Roadmap to Good Health. We encourage everyone listening to read the book. Information on how to get it is available in the show notes. As George mentioned, it's available through all good booksellers. Thank you both for everything that you do to advance the mission of OMS and the benefits of lifestyle modification for all people with MS. I hope you both have a very happy 2022.   Sandra Neate (32m 42s): Thanks, Geoff. Thank you. Thanks for having us. It's been a pleasure.   George Jelinek (32m 42s): Thank a lot, Geoff. Great to talk to you again.   Geoff Allix (32m 43s): Thank you. Thank you for listening to this episode of Living Well with MS.   Geoff Allix (33m 41s): 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 be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.    

Coffee Break with community member Vickie Hadge | S4E1

Bio:   Vickie serves as the Ambassador of the OMS Circle in Connecticut. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2006. She lives well with her MS by following the OMS program and encourages others to do the same through her OMS Circle.   Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends.    You can see more of Vickie on YouTube, where she shares her thoughts on living well with chronic illness.   Questions:   Welcome back to our podcast, Vickie, and thanks for joining us again. You were a guest on our second season discussing OMS Circles and community-building, which was great, but now we’d like to get to know you a bit better, as you’re a vital part of our growing global OMS community. Can you please tell our audience a bit about yourself and your MS journey? When did you discover OMS, and what was it like in the early days trying to follow the OMS program? You’re currently serving as the ambassador of the OMS Circle in Connecticut. How is that going and how has having that community helped during the pandemic? On another note, as of recently you’re also doing some work for the charity, tapping into your expertise running a virtual assistant business. Can you share a little about that? What was it like crossing over from being a member of the community to actually working with the charity? Outside of work, what are your passions and hobbies? I actually learned you have quite an interesting one concerning cameras and mushrooms. Do tell! You’re also a passionate plant-based foodie, and just completed a special certification in that I believe. What can you impart to our listeners about any personal discoveries you’ve made delving into that rich culinary space? Finally, and a bit of a tradition here on Coffee Break, are there any tips or pieces of advice from your own experience that you can share with those newer to the OMS program to help them on their journeys? Thanks so much for joining us on this episode of Living Well with MS Coffee Break, Vickie. I hope you have a wonderful 2022!       Vickie’s Advice to New OMSers (in her own words):   Remember, change takes time, and it can be subtle! Since starting my journey with OMS over four years ago, I am still noticing small improvements, one of them being better balance.  Change can be difficult at the beginning, but your body and your habits will adjust. Keep trying to make progress with implementing the program and soon it will become part of your daily routine without thinking about it. Sleep and stress reduction are two keys to living well with our MS. Don't forget, the OMS program is much more than a diet.   Some Tidbits About Vickie (in her own words):   Although many think I have restricted my diet, I have discovered since committing to being whole food plant-based that my diet has diversified considerably. With over 20,000 types of edible plants out there, I have a more diverse diet now than I ever did. Since the pandemic hit, I discovered a love for walking in the woods and started a hobby of photographing wild mushrooms. When I am not working or volunteering you can usually find me in the garden, cooking, or hanging out with husband, children, and grandchildren.   Links:   Vickie’s YouTube Channel Learn more about OMS Circles   Coming up next:   On the next episode of Living Well with MS, premiering on February 9, we are honored to welcome back Professor George Jelinek, the founder of Overcoming MS, and Associate Professor Sandra Neate, the head of the Neuroepidemiology Unit (NEU) at the University of Melbourne. They’ll be discussing the release of the brand-new Overcoming Multiple Sclerosis Handbook, so this is a special episode you won’t want to miss!   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.   S4E46b Transcript Coffee Break #27 with Vickie Hadge   Geoff Allix (10s): Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family made for people with multiple sclerosis interested in making healthy lifestyle choices and 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.   Geoff Allix (52s): 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. Get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break. For this episode of the Living Well with MS Coffee Break, I'd like to welcome back Vickie Hadge. Vickie serves as the Ambassador of the OMS Circle in Connecticut, USA. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2011.   Geoff Allix (1m 33s): She lives well with her MS by following the OMS program and encourages others to do so through her OMS Circle. Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole-food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends. Vickie, welcome back to the podcast, and thank you for joining us again. You were a guest on season two of the podcast, way back a couple of years ago, discussing OMS Circles and community building. Now, we'd like to get to know you a bit better as you're a vital part of the growing global OMS community.   Geoff Allix (2m 18s): To start off with, could you tell our audience a bit about yourself and your MS Journey?   Vickie Hadge (2m 24s): Thanks so much for having me back, Geoff. It's my pleasure. Sure, I live in Connecticut in the Northeast United States. I started my MS journey way back in 2006. I initially had some foot drop issues, but I wasn't diagnosed at that time. They really weren't sure. They wanted to keep an eye on me, but it definitely got my attention. I started paying closer attention to my health, eating more vegetarian, doing yoga, and meditating. This is all before OMS came into existence. Then back about 10 years later, I started having more symptoms and went back to the doctor and took about a year from that point to get diagnosed.   Vickie Hadge (3m 8s): I was officially diagnosed in 2017 and I have been living well with MS since.   Geoff Allix (3m 18s): When did you discover OMS?   Vickie Hadge (3m 21s): Actually, I discovered it just prior to my diagnosis. I think like many MS patients, I had a feeling what my diagnosis would be. It was in the realm of discussion with the doctors as they're trying to figure out what was going on. I found OMS just prior to my diagnosis so when I got diagnosed, it was really easy to jump right in and start implementing changes into my diet lifestyle to make myself even healthier.   Geoff Allix (3m 50s): You were already a vegetarian?   Vickie Hadge (3m 52s): I was vegetarian when I started and had been for some time, but then when I looked into the research from OMS, all the evidence behind it, I switched over to completely vegan. Since then, I have gone over to whole food, plant-based so no more vegan junk food.   Geoff Allix (4m 10s): Yes, I think that's a key thing, actually, the word whole food, because I've been an unhealthy vegetarian in the past. You can eat really junk food, can't you? There's stuff now that I don't know.   Vickie Hadge (4m 27s): Yes, you can. All the chips, the crisps, the donuts, Oreo is making an all vegan cookie, but not very healthy.   Geoff Allix (4m 34s): I don't know about you in the States, but probably the same. We've got the, I won't call them out, but the two leading manufacturers of burgers, let's say, now have vegan versions of the leading famous burgers. I'm fairly sure that they're not very healthy.   Vickie Hadge (4m 59s): Yes, to be sure. Lots of chemicals, lots of artificial flavors, lots of not-so-healthy fats.   Geoff Allix (5m 11s): Yes. You're currently serving as the Ambassador of the OMS Circle in Connecticut. Firstly, how is that and how has that helped? How have you managed that? The OMS Circles are regional communities of people following OMS. Obviously in the pandemic, that's been difficult because, traditionally, people would have met up and seen each other. How have you managed over the pandemic and how has having a community helped during the pandemic?   Vickie Hadge (5m 47s): Excellent question. I think the pandemic caught us all off guard. We went into lockdown pretty quickly. Our group, initially, when the pandemic started, I think, we really wanted to stay in touch with each other. We were very concerned about what was going on and what was happening in the world, especially since we had pre-existing conditions. When the pandemic lockdown started, we started with weekly meetings, whereas previously, we were doing monthly meetings. We did weekly meetings via Zoom. Everybody's an expert in Zoom now. It was really helpful for the entire group, me included, to talk about what was happening with the pandemic, our concerns with our conditions, and maybe the disease-modifying treatments that we are on.   Vickie Hadge (6m 36s): It was really helpful to have that connection with other OMSers and have that support. We've since gone down to monthly meetings again, and also, still really important, we're still meeting via Zoom. We still like to connect with each other, but we did have some fun this summer where we were able to meet outside when it was safe. We had some really nice meetings outside. One was at a local vineyard. They had live music and we brought healthy snacks to share with one another. It was really great to see everybody face-to-face during the outside meetings.   Geoff Allix (7m 11s): Well, yes. We have one coming up actually where I live. The MS center is doing a tryout for their oxygen therapy and the OMS Circle works at the MS center. She said they're already set up for socially distance, COVID safe, and everything so we're actually going to have a few of us go there, but it is strange. There are quite a lot of people in my Circle who I've never physically met, but we have a really active WhatsApp group, and we chat a lot. I think we communicate an awful lot more because it's virtual than we did before where we met maybe monthly physically.   Geoff Allix (7m 54s): Now, we actually have daily chats happening and it's quite active. It's actually increased our communication rather than decreased.   Vickie Hadge (8m 3s): That's wonderful.   Geoff Allix (8m 4s): The other thing that has changed is that you now do some work for the OMS charity going from your work as being a virtual assistant. Could you share some information about that?   Vickie Hadge (8m 20s): Sure. I've been a virtual assistant for almost 20 years. I have been working virtually long before the pandemic. I started working with OMS this year, and I'm very excited to be part of the team. I'm providing some support directly to Grazina Berry, the CEO, and Dowshan Humzah, who is the new chair of the board. It's really exciting to help them with the plans coming up for 2022 and the 10-year anniversary of OMS. I also work within the broader team. I help support meetings and do documentation. It's really exciting to work with them.   Vickie Hadge (9m 3s): This is a whole other new community.   Geoff Allix (9m 6s): You already are a member of the community, but now you're both members of the community and working there as well. How has that changed?   Vickie Hadge (9m 15s): Yes, it's been pretty exciting. It's like looking behind the curtain and seeing the inner workings. I have to say, before I started working with OMS, how impressed I was with the organization, and now, being on the inside, seeing how it all comes together, and seeing all the people that it takes to make this happen, their dedication, the planning, and the supports that they put in place for OMSers is just wonderful. It's so nice to see a team working together, celebrating living well with MS, and doing what it takes to live well with MS.   Geoff Allix (9m 58s): I've met quite a lot of the people before during the podcast who became more involved. You could easily just think that OMS has a new book every few years and does some retreats. Really, is there anything else going on? Then you realize there is an awful lot. All the research and there's communication with different health bodies in different countries. There are huge amounts going on.   Vickie Hadge (10m 25s): Yes. I know that this year they're starting to work with healthcare providers and working directly with the healthcare providers to get more information out there. It's exciting to see the changes that are coming and all the programs that they're implementing coming up.   Geoff Allix (10m 46s): Outside of work, could you give us a bit more of an insight about who you are by talking a little bit about your passions and hobbies?   Vickie Hadge (10m 55s): Sure. I live at home with my husband, and I have two grown children and two grandchildren. The pandemic has changed our lives like everybody’s a lot. One of the things that we changed during the pandemic is we've been hiking and taking walks in the woods a lot more this year. It's really added a lot to stress reduction in my life, and I just love being out there in the woods. I have found a fascination with mushrooms. I have noticed them on my walks, and I started photographing them with my phone. It is amazing the variety of mushrooms and now I'm almost drawn to them every time we go out for a walk.   Vickie Hadge (11m 39s): They come in all different shapes, colors, and sizes. I have taken pictures of purple mushrooms, black mushrooms, and orange mushrooms. They're just fascinating. I started researching a little bit about them. They're not an animal and they're not a vegetable. They're their own classification. I just find them fascinating and fun. That's one of the benefits of the pandemic and changes in our life this past couple of years.   Geoff Allix (12m 7s): Yes. I'm incredibly thankful that I live in a rural area. I can't imagine if we moved from the middle of London to a very rural area many years ago, 17 or 19 years ago. If we'd still been in London with all lockdowns, I think we really would have been stuck inside an apartment and being somewhere rural where you can go out and about in lockdown. It was really nice, so I feel sorry for the people who are in cities, apologies, but it's all improving, hopefully.   Geoff Allix (12m 51s): You mentioned mushrooms. You're a passionate food lover and you've just completed a special certification. What could you tell our listeners about personal discoveries that you've made learning about food, specifically, OMS-compliant food?   Vickie Hadge (13m 10s): Sure, yes. I decided to really focus on plant based when I started OMS because I was vegetarian before. Recently, I got a certificate in plant-based nutrition from eCornell, and I learned so much. As we were discussing earlier, vegan food can be healthier or not healthy. Everything that we consume is going to contribute to our health or lack thereof, and I learned so much about nutrition and getting the most nutrient-dense foods that I could into my diet. In learning that, I also became a little braver in the kitchen. I have learned to experiment a lot more with foods and combining foods, and maybe going off the recipe a little bit saying, "Hey, this would be a lot better if I added some dark leafy greens to it so I could up the nutritional content."   Vickie Hadge (14m 4s): I even eat my oatmeal with greens now. I've put greens and marinara sauce on my oatmeal and it's a really nice savory breakfast as opposed to a sweet breakfast.   Geoff Allix (14m 19s): Could you give our listeners a tip then of how they could improve their diet?   Vickie Hadge (14m 26s): Yes. One tip is dark leafy greens. They are the most nutrient-dense foods that we can consume. I try to do it at least three times a day. I mentioned the oatmeal. You can do fruit smoothies, have salad. Add greens to anything that you're cooking, whether it's a super stew or a sauce. Dark green leafy vegetables also include the vegetables like broccoli and broccoli sprouts. Broccoli sprouts are the most nutrient-dense food that we can eat. If you like sprouts, eat broccoli sprouts. Also, focus on omega-3 rich foods. OMS lets us know that it's important to have that good balance of omega 3s to omega 6 fats in our diet.   Vickie Hadge (15m 15s): There are a lot of omega-3 rich foods like Brussel sprouts, walnuts, broccoli, kidney beans, wild rice, flax seeds, chia seeds, and hemp hearts. Sprinkle some chia seeds in your smoothie or have some hemp hearts on your salads. They're really nutrition powerhouses.   Geoff Allix (15m 33s): Another thing asking for a bit of advice, we have a tradition on the Coffee Break to ask if there's any advice from your experience that you could give, particularly to people who are new to following OMS that would help them start their OMS journey?   Vickie Hadge (15m 50s): Yes, I think one of the important things is to start where you are. Right where you are. "Here I am. I'm going to make steps today to make changes, to recommit to living well." I think we're just into the new year now as we're recording this, and this is a great time to do some self-evaluation. "Where are you on your seven steps of the program and where can you make tweaks to adjust maybe a little?” Add some more dark green leafies, get rid of the processed foods. Focus a bit more on maybe stress reduction, adding daily meditation or walking meditation.   Vickie Hadge (16m 29s): We talked about walking and how relaxing that can be and stress reducing that can be. Another thing is don't expect changes in one week. This is going to take a long time. I think Dr. Jelinek said, "Envision it as a large boat. You can't turn it around on a dime. It's going to be slow to turn. Once it turns and gets through that turn, it can take off in a new direction." Stick with the program, keep making changes, and look for support on the OMS website and through OMS Circles.   Geoff Allix (17m 8s): I think that's the problem, isn't it? We've become accustomed as a society to instant things. You have a headache; you take a tablet and then it goes away. Even to the point now, my kids hate it if there's something that comes out weekly on television, which is rarer and rarer but there are still some things on Netflix that are released weekly. They can't believe that this is how we used to watch television. They're like, "What? You waited a week between episodes?" "Yes, that's what happened because it was on schedule." Now, everything's instant. I think that's the problem with healthcare is that people just expect that I take a tablet, or I have a treatment, and then that's it.   Geoff Allix (17m 49s): It will instantly make a change. When you say, "Well, this could be six months, at least, maybe even a couple of years for you to get better," then they start to lose faith and they think, "Well, I tried it for two months. It didn't really do anything."   Vickie Hadge (18m 6s): Right, exactly. It does take time. I try to think of it as building muscles in the gym. If I go to the gym once and lift weights, I don't have big muscles, but if I go consistently and work at it and try a little bit harder each time, then the muscles will come, and it takes time.   Geoff Allix (18m 21s): Yes. Okay, thank you very much for that. Thank you so much for joining us on this episode of Living Well with MS Coffee Break. I hope that you have a wonderful 2022.   Vickie Hadge (18m 28s): Thank you. My pleasure. I hope you have a great year as well.   Geoff Allix (19m 28s): 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 on a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

Happy 10th Anniversary, Overcoming MS! A look at what lies ahead with CEO Grazina Berry | S4E2

Happy 2022 and welcome to the premiere episode of Living Well with MS. We are thrilled to launch the 4th season of our podcast with a very special episode celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion, and the start of a hopeful new year, than an in-depth conversation with OMS CEO Grazina Berry. Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has been focused on strengthening Overcoming MS’s ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world’s leading MS lifestyle charity.   Bio:   Grazina Berry joined Overcoming MS in July 2020 as CEO. She has had an extensive career, as a senior and board executive, in the public and not-for-profit sectors.      Grazina is passionate, driven and committed to making a positive difference to the lives of all communities and helping OMS achieve its vision – that every person with MS is empowered to take control of their lives, is making informed lifestyle choices and can lead a full and healthy life.     Over the last year and a half, Grazina has been working tirelessly with the OMS community, the team, trustees, and partner organizations to implement OMS’s new strategy, focused on informing, supporting and empowering people with MS and their families to lead healthy lives. A collaborator at heart, Grazina is a firm believer in working in partnership with people with MS, their families, professionals, and other MS focused organizations, so we can learn from one another, adapt to the ever-changing and complex world around us, and create long-lasting impact, together.   Intro:   Happy 2022 and welcome to the premiere of the 4th season of Living Well with MS, the podcast from the world’s leading MS healthy lifestyle charity. This is our season opener and 77th episode to date, and to mark the occasion we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina.   Questions:   Our 4th season is just one of the milestones that Overcoming MS is marking this year. Most notably, it is the organization’s 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives? In your view, how has OMS evolved over the past decade? As CEO, what are some of the key initiatives that you’re introducing or have introduced to align with the organization’s 10-year anniversary? And in the vein, what might be some of the specific banner projects OMS will be rolling out this year? If OMS was a person and disposed to making new year’s resolutions, what would its resolutions be? How have you seen the MS landscape, and more broadly the holistic health and healthy lifestyle space, change over the years? Has it evolved for the better, worse, or neutral? How has OMS kept pace with some of the changes in the MS landscape you’ve noted? What are your most important considerations in leading OMS into its next decade? What are some of the challenges you feel lie ahead? How do you feel OMS has changed as the result of the deeply impacted, particularly from the physical and mental health perspectives, post-Covid world? How do you feel OMS is making deeper inroads into its community, strengthening its ties with them as well as their ties with each other? If there is one thing you can choose to etch as OMS’s legacy for the next decade, what would it be? And finally, what are you personally most excited about for the year ahead?   Links:   About Grazina Berry About Overcoming MS OMS 2021-23 Strategy New! OMS Advocacy   Coming up next:   Please join us on January 24 for the season premiere of Living Well with MS Coffee Break, our podcast series dedicated to the voices and stories of our diverse global community. In Coffee Break #27, meet Vickie Hadge, the Ambassador of the OMS Circle in Connecticut. Vickie is an avid plant-based foodie and speaks about her experiences living well with chronic illness on YouTube. We hope you can drop in and get to know her!   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.   S4E46 Transcript Happy 10th Anniversary, OMS! A Look at What Lies Ahead with OMS CEO Grazina Berry   Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS, a 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 used to tune in to 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 in to our podcast.   Geoff Allix (47s): 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. Happy 2022, and welcome to the premiere episode of Living Well with MS. We're thrilled to launch the fourth season of our podcast with a very special episode, celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion and start on a hopeful new year than an in-depth conversation with OMS CEO, Grazina Berry.   Geoff Allix (1m 32s): Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has focused on strengthening Overcoming MS's ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world's leading MS lifestyle charity. Welcome to the premiere of the fourth season of the Living Well with MS podcast from the world's leading MS Healthy lifestyle charity. This is our season opener and 77th episode to date. To mark the occasion, we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina.   Grazina Berry (2m 12s): Hi, Geoff. Thank you for having me back. I must have got something right the first time as you invited me to come back again.   Geoff Allix (2m 22s): I'm glad to have you back. Our fourth season is just one of the milestones Overcoming MS is marking this year, and the biggest one, most notable is the organization's 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives? Probably would be socially distanced in the UK.   Grazina Berry (2m 52s): That's fine. Definitely. Well, first of all, congrats to you, Geoff, as well, being the podcast host for our fourth season. That's a celebration as well.   Geoff Allix (3m 5s): I can't believe it's been this long.   Grazina Berry (3m 8s): I know, but indeed, bearing in mind all the upheaval and uncertainty around us, especially over the last two years, I think we could all do with a little party, couldn't we? The thing about the 10th, 10 is such a big number, isn't it? If I imagined this party, it would have to be one that is really filled with fun, pride, enjoyment, lots of reflections over the standout moments, maybe a few tears here and there, giggles, raise a glass or two, and I think to do the anniversary and all the achievements of the organization over the last 10 years justice.   Grazina Berry (3m 52s): We should probably have done parties. I think that's doable by technology, isn't it? We'd like to celebrate with our community who've helped us get to where we are and we'll be looking to unveil the plans in the new year, wanting that to be an element of surprise as well. The listeners and you, Geoff, will just have to watch the space.   Geoff Allix (4m 16s): In your view, what's happened in the last 10 years? How has OMS evolved over the past decade?   Grazina Berry (4m 26s): Wow, that is a massive question, really. I think to answer it in the best possible way, to do all the achievements justice, I think we should try and jump into that time machine, go back to the beginning, and reflect on some of those standout moments of which the very first one has to be 2012. The fundamental starting point when the charity began, established by the amazing Linda Bloom, working very closely with Professor George Jelinek and Gary McMahon, the CEO at the time. That was the humble beginning in Australia.   Grazina Berry (5m 8s): Then in 2013, the charity started distributing the OMS books for free in the UK and held the very first UK conference. I suppose these kinds of events focused on information, very much marked the next couple of years, 2014 in particular. 2014 is worth a bit of a pause as well because we started funding open-access research projects at the neuroepidemiology unit at the University of Melbourne. Then 2015 and 2016 were also really, really important because we began to define our focus internationally.   Grazina Berry (5m 52s): We registered as a charity in Australia in the US in 2015. We really went all out organizing residential retreats. Geoff, I believe you've been to one of these immersive, multi-day experiences connecting people with one another, beginning to build communities, but also informing them about the OMS program.   Geoff Allix (6m 20s): Yes, I did. A quite transformative thing going to an OMS retreat, but, obviously, they had to stop because of COVID. Also, I'm guessing there are issues with scalability as well.   Grazina Berry (6m 32s): Yes, absolutely.   Geoff Allix (6m 33s): It's not going to be for thousands of people at each one.   Grazina Berry (6m 36s): Unfortunately. I wish they could be, but alas, they can't. However, perhaps later, when we come to talking about plans for the future, I can share with you some of the ideas that we're actively developing and pursuing for reimagining those important events. Back into the time machine, in 2016, I wanted to mention as well because OMS went to the US to raise awareness of the organization and the program, visiting three cities, Boston, New York, and Los Angeles. Then 2017 and 2018, again, quite a lot of events.   Grazina Berry (7m 15s): There was one in Northern Ireland. There were a few retreats in Wales, actually, and Australia. Very importantly, that's the year when we launched Overcoming MS Circles. Twenty, I believe. We had 20 in 2018, and these are volunteer-led community support groups. Really important in terms of grassroots activism in those early days, but also connecting people. 2019, another memorable year. UK conference in Edinburgh followed by a high-profile event at the House of Commons in London, and importantly, Geoff, the much-loved podcast began.   Grazina Berry (8m 12s): 2019, a really important year. Then we went into turmoil, complex year, I would say. 2020, of course, the pandemic hit. We started to change program and the organization with Gary stepping down and my arrival. Then 2021, again, the pandemic isn't over and it's still causing havoc, but that's the year that marked our new three-year strategy publication in March and growth in our community to 94 circles that we have today, our online platform, but also growing the strength of our community voice.   Grazina Berry (8m 57s): Really, going back to your question, Geoff, about evolution, I think you'll notice that the charity started by the immense focus on raising awareness, spreading the word, about the pioneering work of Professor Jelinek. A lot of effort went into high-profile raising events. We then started working more deeply with people through retreats, and as you said, from your own personal experience, impacting them really profoundly, but the numbers were quite small, and they were pretty costly to deliver. Gradually, we've started to think about scale and how technology could help us reach more people.   Grazina Berry (9m 41s): My arrival, as I reflect on it, marked a crossroads point at the charity. I led a broad review exercise speaking with the community, trustees, and the founders, of course, the team, lots of other MS organizations, partners, healthcare professionals, looking at whatever data we could really get hold of. Where is MS prevalence heading, for example, and then sadly it’s heading north, isn't it? It's rising. Through all of this, we realized three really important things. One was that awareness alone is not enough to enable or motivate people to change their lifestyle by adopting the OMS program to the extent that those changes really stick and do so at scale.   Grazina Berry (10m 30s): We also realized that we need to hold people's hands and support them to become much more attuned to what they need in the contexts in which they live. A one size fits all approach really would not work. Third, we cannot achieve impact at scale by doing it alone. We need to work with healthcare professionals and other organizations. As a result of all this evaluation, the new strategy came to be that has begun that shift to combine awareness alongside some fundamental organizational developments really across our four goals - inform, support, empower, and collaborate.   Geoff Allix (11m 18s): You hinted that there are some new things in the pipeline. Is there anything you could give us a hint of? What are some of the key initiatives you're introducing? Could you give us a hint at some of the banner projects that might be rolled out this year?   Grazina Berry (11m 38s): Yes, it's going to be a bumper year, Geoff. I can assure you of that. Of course, marked with celebrating the events throughout the year, so perhaps not a big bang. This is the term of a birthday party. Lots of things happening throughout the year and we will be unveiling some really exciting initiatives, and possibly those virtual parties. I can mention a few things without spoiling the surprise that I know the team would be happy for me to share. I think, really importantly, we'll be celebrating the publication of the OMS Handbook in February.   Grazina Berry (12m 18s): This is the new book co-edited by Professor George Jelinek, Dr. Sandra Neate and Dr. Michelle Donaghy with multiple authors adding their voices. Please pre-order your copy not to miss out. You can do it now. We'll also be refreshing our brand with very generous pro bono support from the fantastic team at JMA in Australia. Geoff, thank you for your contributions to helping us review the brand alongside other ambassadors. This has been a really insightful exercise to do. One of the reasons why we are refreshing is that we aligned ourselves much more closely to our values being inclusive, empowering, community-focused, evidence-based, collaborative, and dynamic, but of course, none of us are naive to expect that brand alone would help us to achieve that.   Grazina Berry (13m 12s): This is important because we wish to present a really professional front to our broader audiences, including and especially, healthcare professionals. We will also be ramping up our advocacy initiatives and our work with healthcare professionals. We will be updating our existing information resources and developing new ones, as well as beginning campaigns. We will be looking to bring back events. I know we've got so many people in our community who are really, really excited about this and need more face-to-face interactions. We are hoping to trial a new immersive experience of supporting people with MS.   Grazina Berry (13m 59s): Taking what was wonderful from the retreats, combining a face-to-face workshop with digital resources to inform, support, and empower people to embrace fully the OMS program. We also want to really boost our community engagement and support our ambassadors and circles by investing in additional resources. We will be rolling out, as a bit of a spin-off, a webinar program that is with Dr. Aaron Boster, having piloted the first episode recently, and that's been incredibly well-received. We were absolutely overwhelmed with questions that people had.   Grazina Berry (14m 45s): We want to launch webinars series alongside the more mainstream webinars series. Also importantly, we'll be starting to tangibly shape our plans in the US. As you can see, Geoff, there is lots and lots to keep us very busy in 2022.   Geoff Allix (15m 7s): All right. If OMS was a person and it made new year's resolutions, what would the OMS' resolutions for the new year be?   Grazina Berry (15m 15s): I don't know. This is interesting because personally, I tend not to make resolutions, but if I put myself out of this mix, I think probably the most important one would be, be kind to yourself, make more time to listen to your body, look after your body and mind, make time for you. I think all of us are so guilty of not doing that, but alongside this, I think what's really key as well is to show empathy to others, welcome people to the community, openly, supportively, and without judgment.   Grazina Berry (15m 56s): Finally, I would say stick with it. The path of multiple sclerosis is so uncertain for many people but knowing that you're doing all that you can to live well, may that be your driving force, and especially when you have those darker moments, which are probably inevitable, especially in the world that we live in, where uncertainty just keeps on giving and keeps on challenging us.   Geoff Allix (16m 29s): Over time, how have you seen the MS landscape change specifically and also the focus on healthy lifestyle? In a broader sense, bringing a healthy lifestyle, holistic health, how have you seen that change over the years? Did that improve, get worse, or stay the same?   Grazina Berry (16m 48s): Goodness, that is another huge question. What I would like to do is just latch onto that number 10, which is peppering our conversation today and, again, reflecting a little bit. Ten years ago, I was working in a mental health organization, a fantastic organization called Richmond Fellowship, that provides a really wide range of community-based mental health services. What I was seeing back then, and we actively practiced, was seeing each individual that came through the door of our services, we saw them as a whole, not a label or a diagnosis.   Grazina Berry (17m 31s): We took the time to really understand them so that we could address the cause of their distress and mental health challenges. Peer support was already widely used to enable people to help each other, essentially by sharing their experiences, and the mind-body connection was at the forefront. This is 10 years ago. I saw a very similar picture then when I moved to rare illness, cancer space, and other disease areas, actually. We could see already, especially high disease, diabetes, and others.   Grazina Berry (18m 11s): They were all embracing a healthy lifestyle, and more broadly actually, the World Health Organization had been championing a more realistic, personal health management, with encouraging clinicians to look at physical, mental, emotional, and social elements for years. There's been a lot of very positive development happening for years. When I landed in neurology, in multiple sclerosis, I thought actually, Neurology MS Services does have some catching up to do here, but saying that, I think the tide has really been turning and 2015, the throwback to Overcoming MS, that was an interesting year, as we talked earlier, around our international expansion.   Grazina Berry (18m 57s): 2015 was also a very interesting year here in the UK. It was interesting because there was this really significant shift happening in the thinking about the treatment of people with MS, so professors from England, alongside a number of international experts, led a really significant research project called Brain Health, Time Matters in MS.   Grazina Berry (19m 37s): That examined the various impacts on the MS personal economy. They also explored current practices and diagnosis, treatment, and what the barriers to accessing these might be. The study then emphasized the need for a much faster diagnosis of disease activity. One of the standard recommendations was to start treatment early with disease-modifying treatment, and, I really want to emphasize, lifestyle measures whilst ensuring that decisions about the treatment are shared between the patient and condition. If we look at the National Health Service in the UK now, this long-term plan really supports preventive practice and personalized holistic care that Overcoming MS is all about.   Grazina Berry (20m 31s): What we've got now, we've got health and wellbeing coaches, we've got social workers, care coordinators. We can really see that things are changing for the better, and this is incredibly helpful for our cause, Overcoming MS. We need to be able to harness all these positive developments and align ourselves more closely with the changing healthcare systems. We've got this fantastic OMS program, which provides a very practical framework to enable people with MS to effectively self-manage the condition and take control. I think this really taps that prevention agenda.   Grazina Berry (21m 12s): We need to really begin to own this space as an organization, as a charity.   Geoff Allix (21m 23s): How has OMS kept pace with the changes that you've seen in the MS landscape?   Grazina Berry (21m 30s): Yes, so mentioning Brain Health, Time Matter in MS, there was a campaign launched on the back of it. Overcoming MS signed up to support that initiative alongside other MS organizations. That group of organizations is really vast. It's not just those MS charities in the UK that we all know about, but also other organizations internationally, the National MS Society in the US and others. We've also acknowledged, as an organization, the need to engage with and influence healthcare systems. That's very much in our new strategy, new plans.   Grazina Berry (22m 11s): We joined the Neurological Alliance in 2020 so that we could be part of a collective group of organizations focused on influencing policy, sharing best practices, learning from each other. We've also connected with neurologists, MS nurses, and other MS charities through the MS Academy here in England. We've contributed, very recently, to a piece of work that explored co-morbidity, so those other illnesses that people with MS are quite likely to have.   Grazina Berry (22m 51s): For example, depression, diabetes, hypertension, and others. We've also looked at inpatient admissions, especially emergency admissions to hospitals, and the associated costs in patients with MS based on that socioeconomic status across four very specific geographical areas or integrated care systems in England. All this work resulted in a poster called the Wellbeing Gap, One Size MS Service Does Not Fit All. This was presented at the most recent Congress of the European Committee for Treatment and Research in MS, ECTRIMS, as it's known across the sector. We're really trying to keep pace with all these developments more than ever before, recognizing that we cannot achieve our ambitions of the end game without tapping the healthcare system and working with others.   Geoff Allix (23m 47s): We look back over the last 10 years, but if you look forward, what do you think are some of the important considerations leading OMS into the next decade?   Grazina Berry (24m 5s): Wow. We have just stopped talking of the last 10 years now. I wonder what's next. A great question. The first, most important consideration has to be all about people, Geoff, and actually, it's quite an internal consideration, the team, the Overcoming MS team and our volunteers. I'm really fortunate to be working with a group of people who really care about work, who are resilient and passionate. It's going to be so important to make sure that they also feel supported and empowered to do their work, building connections with our community, and really taking pride in what we achieve.   Grazina Berry (24m 48s): It'll also be really important to make sure that they're able to keep hold of that intrinsic motivation that keeps them going. Really articulately described by a guy called Sharath Jeevan in his book called Intrinsic that I can't recommend highly enough for people. Another important consideration would be not being afraid to try new things, projects, approaches, not being afraid to change course, but also, being brave about making tough choices and walking away from things that perhaps don't work so well and just do not have the impact that we seek. Saying that, it will be really key for us to be more vocal and clear about our unique selling point, our USP, being the OMS program, and making sure that it also keeps pace with research developments.   Grazina Berry (25m 43s): We will be establishing a new research advisory group, which is a very exciting development. This group will be led by Dr. Aaron Boster, a neurologist from the US who has that research and healthcare brief. The final consideration, but I'm sure there'll be many more, that being an open-minded organization that really welcomes and embraces new opportunities, tries out partnering with others, and collaborating more, especially with other MS organizations and healthcare systems. This will be very exciting as we begin to focus on expanding and scaling in other geographies, particularly the US, but really exploring those areas where the MS problem is the biggest because they need programs such as ours the most.   Geoff Allix (26m 38s): What challenges do you see lying ahead in the future?   Grazina Berry (26m 44s): Indeed. It's not going to be a breeze, is it? To do all these things and especially really crack and tap into healthcare systems, I think there'll be quite a few. Again, because I think the world is so uncertain, there'll be so many changes happening. We'll just have to make sure we are fleet of foot and we're nimble, able to really respond well. The first one I would single out is the fact that community needs and expectations will continue to change and evolve in line with the world that's around us. That's always moving, never stopping. We need to be really responsive to their needs. This will be both a challenge and an opportunity, of course, because we can then try new ideas and ways of working while also retaining our core and what we're about.   Grazina Berry (27m 40s): Another challenge linked to this will be digital fatigue. Technology, as we know, is a really powerful tool. It enabled us, as a charity, to carry on our virtual outreach through the pandemic, but it won't work or be accessible for everyone. We need to make sure that we develop face-to-face opportunities as well. Being a small charity with lots of ambition, we are so mindful that fundraising remains challenging and will continue being so because there are so many great causes out there, and especially in the MS space, competing for the same pots of money, the evidence of our impact as a charity will be really, really important.   Grazina Berry (28m 27s): Another key challenge is, of course, the pandemic. You probably picked me up on this, Geoff, if I didn't mention the pandemic. I think the pandemic, amongst many other challenges, has really deepened inequalities, those pre-existing inequalities leading to greater unemployment, swelling waiting lists for treatments made those socio-economic circumstances in which people live much more challenging. Well, this really stresses the need for our work, to champion the OMS program, which gives people the tools to live well with MS. As an organization, we need to be so much more attuned to the world around us.   Grazina Berry (29m 7s): This is not easy for a small organization with global reach and global ambitions, and alongside this, and very much linked to the pandemic, but we probably all know that healthcare systems have been struggling, not just in the UK, but also in the US and in other areas before the pandemic, but especially now, we can really see how stressed those systems are with massive waiting lists, backlogs of cases, staff burnout. This is a challenge for us as we try to ramp up engagement with influencing healthcare professionals. It really emphasizes the need for us to develop programs that help relieve those stresses.   Grazina Berry (29m 53s): We have to come up with some very practical solutions that, for example, that the National Health Service can adopt fairly easily. Again, a tough challenge, but I think, game on.   Geoff Allix (30m 9s): How do you feel OMS is connecting, making inroads with the community, and strengthening its ties with the community and the community ties with each other?   Grazina Berry (30m 23s): I think that's a really great question because the community is clearly at the forefront of everything that we do and why we exist as a charity. I would really like to mention and plug a little bit, our very first community engagement survey that we conducted over the summer in August 2021. I want to thank everyone who took the time to answer its 61 questions. It wasn't a slim survey. It was pretty comprehensive, but that survey has given us so many insights into the lives of people with MS and how OMS can support them better. It told us, for example, that 54% of people with MS will not be discussing a healthy lifestyle with their physician.   Grazina Berry (31m 7s): While this may be a result of lots of reasons, we talked about some of them earlier, including the gap in the neurologist curriculum around healthy lifestyle approaches and holistic care, shortages, lack of time, but now more than ever, people need support and advice about stress management, healthy diet, great amounts of vitamin D. This survey is really important for us because it's helping us build a much better understanding of who our community are, where they live, how they interact with the OMS program in real life, what are some of those barriers to changing their diets, moving more, and what can they expect from us as a charity?   Grazina Berry (31m 50s): We are in a really good position, I feel, to improve what we do aligned with our community needs - what they need and what they want. I think what we're also doing is we're building much stronger foundations and grassroots levels through our circles program and we'll look to grow. Again, let's throwback to 2018, we had 20 circles. We now have 94 in 26 countries worldwide. We have 100 ambassadors to lead these really important community peer support groups, and alongside, we also need to offer our volunteer ambassadors the support that they need.   Grazina Berry (32m 35s): That's really important. Our grassroots advocacy initiative that I mentioned earlier, we started with brilliant leadership by Professor Helen Rees Leahy and Allie Marwick, our advocacy trustees. It's really crucial too to strengthen connections between individuals and across the community, but also, and really importantly, with healthcare professionals so that people with MS can feel confident to really adopt healthy lifestyles. People can raise the need for healthy lifestyle conversations with health care professionals during appointments, so I believe we're making great progress, but there's a lot more work that we need to do, which is great.   Grazina Berry (33m 18s): That's why we're here.   Geoff Allix (33m 23s): If there's one thing that you could put down as OMS’s legacy for the next decade, what would that key thing be?   Grazina Berry (33m 31s): Gosh, I always struggle with those questions. I say pinpoint one thing, because there's never just one thing. I'm going to try and say three things, Geoff, if I may.   Geoff Allix (33m 42s): Okay, fair enough.   Grazina Berry (33m 44s): Three things. Well, I think the main one, maybe, it sums up, the head of all the others, is we make it into the mainstream. We are definitely there alongside medical treatments, and we are recommended to every person being diagnosed with MS. Finally, we are regarded as the thought and practice leaders in healthy lifestyle in a massive space. I think these would be really key things for us to get to, this end-game scenario for the next decade.   Geoff Allix (34m 23s): Yes. It would be fantastic if people, by default, heard about lifestyle when they're having that first conversation with a neurologist.   Grazina Berry (34m 34s): Absolutely.   Geoff Allix (34m 34s): It shouldn't be something some people find out about.   Grazina Berry (34m 38s): Google at the moment.   Geoff Allix (34m 38s): Yes. Well, there's a difference between the digital divide. I think most people who are following OMS are tech-savvy enough. They have access to computers, but if it was more widely available and it isn't in some places. In some places, some neurologists hand out brochures for OMS, but that's certainly not widespread.   Grazina Berry (35m 3s): They do. It's not wide, but I think you're absolutely right to mention that, Geoff, because actually, some people will be handed the OMS book. Just reflecting a little bit on some of the achievements this year, we've actually presented to hospitals here to teams of MS nurses and neurologists. As a result of that, we've had this bumper order for free OMS books so they can then hand out to their patients at the point of diagnosis or in following appointments, which I thought was incredibly encouraging, certainly, as we prepared for 2022.   Grazina Berry (35m 43s): What we also know through the survey that we've just talked about is that, I believe, in only 8% of cases, the OMS program will be discussed by the healthcare professionals and recommended, signposting people to us. Only 8%, which, okay, is a low number, but for me, that is a huge opportunity to really shift that number over the next year.   Geoff Allix (36m 8s): I would say, when I was diagnosed in 2015, at the time, it wasn't 8%, then I wouldn't have thought. I think it's gone up to 8% so it's heading in the right direction at this. That's a good thing.   Grazina Berry (36m 27s): Definitely, thank you.   Geoff Allix (36m 28s): Finally, what would you personally be most excited about for the year ahead?   Grazina Berry (36m 34s): Lots of things to be excited about for 2022, alongside those 10th birthday parties that we'll all be looking forward to. I'm really excited about getting out there and building deeper connections with the MS community. Of course, I have to caveat that pandemic allowing, restrictions allowing, but still absolutely build those deeper, meaningful connections with our community groups. I'm also really excited about leading our healthcare professionals' engagement plans to fruition. Actually, it feels like, with the bigger and more diverse board of trustees that we now have, with a full team in place, we'll be in such a great position to achieve our plans in 2022.   Grazina Berry (37m 21s): More about this, people can hear when they tune into our upcoming webinars in January.   Geoff Allix (37m 28s): I would absolutely encourage people, not just listening to podcasts, there are so many more resources, the webinar. There are huge amounts of content and resources on the Overcoming MS website and it's well worth having a look around if you haven't done so recently. It's really expanded the content there. It's huge now. With that, thank you very much for joining us for the start of 2022 and hopefully another successful 10 years.   Grazina Berry (38m 1s): My absolute pleasure, Geoff. Thank you so much. Also, thank you for being one of our committed ambassadors, community members who keep supporting OMS as they adopt the OMS program. Thank you for the opportunity to share those plans, talk about the challenges, reflect on your achievements, and really look forward. I'm wishing everyone a healthy, enjoyable, and much brighter 2022.   Geoff Allix (38m 31s): 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 be informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.  

Coffee Break with community member Pat Feller | S3E33

Welcome to the Living Well with MS Coffee Break, where we are pleased to welcome Pat Feller as our guest! Pat lives in California with progressive MS and follows the Overcoming MS program.  
   
Watch this episode on YouTube here. Keep reading for the key episode takeaways.     
 
Questions and Timestamps:  
01:28 Can you tell us a little about yourself, your life, and your family? 
02:44 How about your experience with MS?  
11:24 How about the Overcoming MS program then? What positives did you see? What problems did you have? 
16:25 How was it transitioning to various parts of the program? 
21:40 The Overcoming MS Circles 
24:33 How did you have to adapt your daily habits? Did you find it quite easy to do mindfulness?  
25:20 Tell us a little bit about Wim Hoff because I think it's quite an interesting topic. 
28:09 How has the COVID-19 pandemic affected your healthy habits? Could you get out and exercise? How did it change? 
33:30 What would be the best piece of advice you could give to someone who is newly diagnosed with MS, or new to the Overcoming MS program?  
 
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More info and links:     
Check out Pat’s profile on LinkedIn 
Check out Pat’s Instagram feed.  
Pat recommends this TED talk by Bob Cafaro, a cellist with the Philadelphia Symphony who was diagnosed with MS and achieved very good results with a protocol very similar to Overcoming MS.    
Pat loves this interview with the incredible Dr. Saray Stancic MD, who was diagnosed with MS and discovered the power of lifestyle medicine   
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Connect with others following Overcoming MS on the Live Well Hub 
Visit the Overcoming MS website    
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