Living Well with Multiple Sclerosis

10 minutes with George: Learnings after following the program for years and the future | S4E29

Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS.  In this final episode, George explains his learnings after many years on the program and his hopes for the future. You can also watch it here.   Keep reading for the key episode takeaways and Professor Jelinek’s bio.  Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS  This is the fifth instalment of a five-part series. Listen to parts one, two, three and four.      Bio: Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits.  George’s Story When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this.  It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis.  George has remained free of further relapses, as have many people who follow the OMS Program.    Selected Key Takeaways:   The Overcoming MS Program can improve your mental health, even if you don’t physically get better. (4:25) “Some of the best things I've seen have been in people who didn't physically get better. A good example is someone who came to the program very early on when I first started running the retreats, who was using a wheelchair and had had MS for 25 years and was very disabled and was very depressed…. I saw her again, some months and then years later, and she was still using a wheelchair to get around and she still clearly was very disabled. But for me, there was this sort of radiance coming from her…. And I thought, now there's an outcome worth celebrating, even though it doesn't quite fit into some of the preconceived ideas we might have about overcoming [MS] or recovering.”    As evidence accumulates, the program evolves. Cryotherapy is one potential example.(10:36) “There's stuff in the literature now about cryotherapy – about regular exposure to cold – and some people have already adopted that. But these things are in their infancy, really, and we aren't at the point where I think it's sensible to adopt it as a mainstream recommendation in the program. But like all evidence-based programs, as the evidence keeps accumulating, the program will keep evolving, and that's how it should be.”  The key elements in the OMS Program involve modifying the factors which cause the illness to progress. (12:24) “There's no guarantee, but if you can modify the risks, (and there's a good science on which factors cause the illness to progress)... then you give yourself every chance of having the best possible outcome. And these are generally diet, exercise, stress, sunlight and vitamin D. They're really the key planks [of the Overcoming MS Program].”    Related Links:   Overview of the OMS program  Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

10 mins with George Jelinek: Defining ‘overcoming’ MS and ‘recovery’ | S4E28

Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS. In this fourth episode, George explains how he uses and defines “overcoming” MS and “recovery”. You can also watch it here.  Keep reading for the key episode takeaways and Professor Jelinek’s bio. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. This is the fourth instalment of a five-part series. Listen to parts one, two and three. Bio: Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits. George’s Story When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this. It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis. George has remained free of further relapses, as have many people who follow the OMS Program.  Selected Key Takeaways: “Overcoming MS” can mean stabilizing rather than deteriorating(4:06) “My own health started to more than stabilize. And that was a surprise to me. In that I started to not only not deteriorate, but I started to feel better than I did before.” For us as a charity, “Overcoming MS” means living a full and happy life after a diagnosis. Although there is currently no cure, depending on your starting point, the Overcoming MS program may lead to improvements in your physical and mental health, reducing the impact of your MS symptoms, slowing or preventing its progression. Some people recover function and, most importantly, you can lead a full and happy life with MS. For George, “recovering from MS” is an ongoing process rather than an outcome(7:10) “I'd say I'm recovering from MS. [But] it's a process, not an outcome. In my view, we're not looking for a final destination. In life, the only final destination is death. I'm not trying to get somewhere, it's the process of how I'm living every day that constitutes recovering from MS.” For us as a charity, we look at a range of uses of the word recovery: recovering lost function, recovering mental strength and recovering quality of life. These different outcomes are possible depending on your starting point and personal situation.  The Overcoming MS program manages symptoms, it’s not a cure(9:00) “A cure has never been part of this. It would be ridiculous to say that living a really healthy life like this cures MS. Because I know if I was to return to my former bad habits, that there'd be every chance that I'd get a flare up of some sort.” Related Links: OMS Blog: How to Stick with OMS OMS Blog: Latest NEU Paper Shows Diet Quality Predicts Long-Term Quality of Life in MS OMS: What are the next Steps? Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here

10 mins with George Jelinek: The importance of mindset and support | S4E27

Welcome to the third episode in our short series '10 minutes with George', with Professor George Jelinek. This series marks the 10th anniversary of the charity Overcoming MS. In this episode, George talks about the importance of mindset, mental health and support from others with MS. Keep reading for the key episode takeaways and Professor Jelinek’s bio. You can also watch it here. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. This is the third installment of a five-part series. Listen to parts one and two. Bio: Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits. George’s StoryWhen George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this. It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with a commitment to the right lifestyle changes, there is a real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis. George has remained free of further relapses, as have many people who follow the OMS Program. Selected Key Takeaways: Take care of your mental health(6:04) “If you're going through… struggles, I would recommend talking to someone like a psychologist. Personally, when I first was diagnosed with MS, I had quite a number of sessions with a psychologist to help me understand what I was going through, what my emotions were about, and how that was playing out in the context of my life.” Others with MS are a great support(6:49) “Peer support is great for people who are struggling because, let's face it, all of us struggle with things at different times in our lives. There's nothing more helpful in many ways than someone who's been on the same journey and has worked out how to deal with it.” Health should be included in our top priorities(10:28) “I was into goal setting and things at the time that I was diagnosed. That was at the age of 45. And I looked back through a number of my goal-setting documents that I produced for myself, and I always left health blank. Now, what does that tell you? Everything else was filled in: work, leisure, finance, you name it, but health was always blank. So, it was an interesting wake-up call for me to get a serious illness.” While Overcoming MS isn’t currently holding retreats, you can find information about other events we are holding here. Related Links: The OMS Mental Health Hub Stories of Hope from other OMSers Join an OMS Circle Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

10 minutes with George Jelinek: Exceptions to following the program | S4E26

Welcome to Living Well with MS. This is the second episode with Professor George Jelinek in our short series '10 minutes with George', which marks the 10th anniversary of the charity Overcoming MS. Some people see the Overcoming MS Program, which Professor Jelinek created, as needing an 'all or nothing’ approach. George explains how and why some people make exceptions to following the program. You can also watch this episode here. Keep reading for the key episode takeaways and Professor Jelinek’s bio. Make sure you sign up for our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. You can listen to part one here. Bio: Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits. George’s Story: When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this. It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with a commitment to the right lifestyle changes, there is a real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis. George has remained free of further relapses, as have many people who follow the OMS Program.   Selected Key Takeaways: What you do most of the time matters more than an occasional slip-up (4:50) “Your health in 20 or 30 years’ time will reflect the whole range of things you've done and your daily activities over all that time. And that's true, in general, in any illness. The occasional slip up in that context is essentially mostly irrelevant.” Look inward if you're struggling to stay on track with the Program (7:10) “If there's an inner struggle going on around [sticking to the program], then trying to get some help and understand what that struggle is about is useful... Is it related to not valuing oneself, not valuing one's health? [Or] because of perhaps the way we've been brought up? There are all sorts of different reasons why not placing yourself and your own health as important in your life would manifest in not doing everything that you can to try and stay well.” The support of a partner is crucial (9:51) “When partners came to the retreats, we would often find that their highly sceptical attitude at the beginning of the retreat was replaced with a total commitment by the end. Not only to support their partner but to do everything they could for their own health, because they would come to realise how important it is to stay well for themselves.” While Overcoming MS isn’t currently holding retreats, we do invite partners to play an active role in supporting the PwMS in their life by  adopting the Overcoming MS Program.   Related Links: Join Circles Online, OMS’s virtual support groups Sticking with the OMS program Tips and information for following the Overcoming MS diet   Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

10 minutes with George Jelinek: Getting started with Overcoming MS | S4E25

Welcome to Living Well with MS. We are pleased to welcome Professor George Jelinek as part of a short series, '10 minutes with George’. These special episodes with the creator of the Overcoming MS Program mark the 10th anniversary of our charity, Overcoming MS. In this first episode, George explains how to get started with the Overcoming MS program.  You can also watch it here. Keep reading for the key episode takeaways and Professor Jelinek’s bio. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS   Bio: Professor George Jelinek developed the Overcoming MS Program and founded the Neuroepidemiology Unit at the University of Melbourne's School of Population and Global Health which continues to research its benefits. George’s Story When George was diagnosed with MS in 1999, he was determined to do something. His mother had died as a consequence of her MS, which spurred him on to sort through the medical literature on MS. His career as a Professor in Emergency Medicine and his background as Editor-in-Chief of a major medical journal gave him the tools to do this. It became clear to George that remaining well after a diagnosis of MS is more than just a possibility. He found that with commitment to the right lifestyle changes, there is the real probability that many people with MS can live long, healthy lives, relatively free of the usual problems associated with the illness. These lifestyle recommendations are now referred to as the Overcoming Multiple Sclerosis (OMS) Program, which he detailed in his book Overcoming Multiple Sclerosis. George has remained free of further relapses, as have many people who follow the OMS Program.   Selected Key Takeaways: The Overcoming MS Program is evidence-based (04:03) “The OMS book is obviously a must-read. And that gives you the credibility and the science behind the whole program. This isn't something that has just occurred to me in the middle of the night or anything like that. It's taken quite a bit of work and a fair bit of time, and the right sort of background to understand the science to really put it together.” Overcoming MS is about choice (09:24 “The whole basis of OMS isn't to tell people what to do. We've never, never sought to give rigid guidelines for people or anything like that. This is all about providing choices for people, choices [so] that they're able to look at the range of what's on offer and choose what's most appropriate for them. For some people, that's all of the program for some people, there will be parts that don't feel appropriate for them.” Meditation can benefit all aspects of life (11:55) “Quite apart from the health benefits, there are enormous benefits to one's whole life in terms of the insight aspect that comes with meditation practice, [and] the improvement in one's inner landscape and emotional life that that comes along with that. You develop and learn the skill of tolerating difficult thoughts and situations.”   Related Links: Books: Overcoming Multiple Sclerosis and The Overcoming MS Handbook The Overcoming MS program Try a guided meditation   Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you enjoy Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

The 100th episode with Dr. Jonathan White | S4E24

Welcome to Living Well with MS Coffee Break #36, where we are pleased to welcome Dr. Jonathan White as our guest for this very special episode, our 100th podcast in the Living Well with MS series! Keep reading for the key episode takeaways and Jonathan’s bio. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. Jonathan’s bio: Career: Jonathan went to University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss. In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. Overcoming MS and personal life: Jonathan was diagnosed with RRMS in October 2015 and has been following the OMS Program ever since.  Dr. White assists OMS as a medical advisor and event facilitator. He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film and spending time with his family. You can learn more about his background here.  Selected Key Takeaways The new Handbook is an accessible version of the original Overcoming MS book: (8:58) “I've always thought of the main OMS book as being a textbook, almost like a reference guide. Whereas the, Overcoming MS Handbook is a lovely light and easy [book] that you could dip in and out of. I loved reading it and I picked up lots of tips. And it was great to hear from the community itself.” The first 10 years of the Overcoming MS charity’s message of hope has been groundbreaking: (13:39) “I think [the OMS charity] has been paradigm shifting and groundbreaking. That message of hope, of us giving people a sense of mastery. That the traditional description of this condition - and how it affects people - doesn't have to be that way through relatively simple things that you can do for yourself. And I think that [message] came at a time where it was so needed. In fact, now it's needed more than ever.” The Overcoming MS Community plays a very important role: (20:41) “[The Overcoming MS Community] fills the bucket completely for me. It's been a wonderful privilege professionally, as well, to be able to spend some time with people, like myself, living with MS. And to hopefully give them a little bit of information, to clarify some things for them and to maybe steer them in the right direction. And then to see the amazing changes that they implement in their lives. It is so gratifying professionally to be able to help someone like that.” Find the life worth enjoying… with rebellious hope: (25:40) “Dame Deborah James, who was a phenomenally passionate cancer campaigner, … sadly passed away in June, 2020. But her very last Twitter post....just spoke to me and I thought she's put this so beautifully. This is exactly how I feel about OMS [Overcoming MS] and MS generally. So I'm going to use her quote. She said, ‘Find the life worth enjoying, take risks, love deeply, have no regrets and always, always have rebellious hope.’ And I just love the idea of rebellious hope, because that to me is me and it's me and [Overcoming MS] OMS.” Related Links: Books: Overcoming Multiple Sclerosis and The Overcoming MS Handbook Join an OMS Circle Dame Deborah James’ You, Me and the Big C podcast   About Coffee Break: Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. We hope you enjoy this episode’s conversation with Dr. Jonathan White, coming to you straight from Northern Ireland.   Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here.

Calming the Chaos – in Conversation with Mattie Cummins | S4E23

Bio:   Mattie is a counselor, brain coach and CEO of Cerebrations, LLC, with over 25 years of experience in social work, counseling and coaching for people with anxiety, chronic pain, neurodiversity, and other life transitions. Mattie guides people on a journey to harness the power of brain science and body awareness to master the art of thinking, and begin thriving, instead of just surviving.   Mattie has a bachelor and master's degree in social work and her varied experience in nonprofit leadership, system advocacy, program development, brain function, and counseling provide a unique perspective on resilience, creativity, and how to empower people to tap into their own inner strength, beauty, and experiences to calm their internal chaos.   Selected Key Takeaways   Mindfulness is about being present and aware of your body and emotions as much as possible throughout the day: (7:19) “We do a mindfulness practice around breathing or visualization to calm down the brain so that you can then begin to, to hear what's happening in your brain so you can actually change the cognition.”   There are a multitude of factors that influence mental and physical health in a PwMS, some that are directly related to multiple sclerosis and others that aren’t. (8:21) “There are all these layers of the reason why we live in chaos. And that can be lack of sleep. That can be grief from the MS. That can be just changes in our relationships because that happens too. And that's going to affect the way that we feel.”    It’s important to have a variety of strategies and tools to deal with stress and life changes. (11:54) “Life changes anyway, I mean, but when you have autoimmune disorders, life changes drastically sometimes at the drop of a hat. You have the, like, I call it a toolbox. You have a toolbox that you go, Hey, life's got more stressful. I'm going to pop open the top. I'm going to pull out the tools that work for me. And we're just going to add in some different tools for this particular situation.”   No one is perfect and self-compassion is vital to reducing stress and embracing the unexpected.   (17:24) “Thriving to me is living in the joy of life and being present. When we have the capacity to be present, understanding when we don't have the capacity to be present, but that we actually walk through every day with a calmness that today is going to be whatever day it is.     Related Links:     OMS blog by on tips to reduce stress-related inflammation OMS resources for managing anxiety Check out the Art of Anxiety class online Join the Calming the Chaos Collective, a free group experience Dig deeper into Mattie’s thinking by reading her blog   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Yoga Moves MS with Mindy Eisenberg | S4E22

Bio: Mindy Eisenberg, MHSA, C-IAYT is the Founder and Director of Yoga Moves MS, a nonprofit with the mission of improving the quality of life for individuals with MS, Parkinson’s Disease, and other neuromuscular conditions through the provision of adaptive yoga and holistic health and wellness education. Mindy has provided yoga therapy to individuals with mobility challenges for over 17 years and thrives on building a strong, mighty community for her students, their families, and care partners. She is the author of Adaptive Yoga Moves Any Body, created for individuals with MS and neuromuscular conditions and Adaptive Yoga Cards, daily yoga moves for all ages and abilities. She is a qualified Mindfulness-Based Stress Reduction Teacher and certified Buteyko Breathing Instructor. Her experience as a health care administrator at the University of Michigan Medical Center contributes to her ability to bring the Yoga Moves philosophy of healing to the healthcare arena. She created the cutting edge annual Virtual Holistic Health and Wellness Forum for MS; presents to corporate, academic, and yoga therapy organizations; conducts adaptive yoga teacher trainings; and offers small group and private therapeutic yoga, breathing, and meditation sessions. She lives with her husband and pets Felix and Oscar, in Michigan, and loves to visit her daughter and son, Julia and Noah, in New York City.   Selected Key Takeaways Anyone in any body can benefit from yoga (8:14) “This is a big issue that people are fearful of yoga or they think they can't do it. It's in the forefront now, it's a mission of mine to help people understand that anyone can do it. And yes, yoga does lend itself to adaptation because the idea is that you are not forcing your body into a pose. The pose is supposed to benefit you.”   It’s more about the journey than the destination (16:56) “Yoga is called a practice for a reason. And the practice is every day you get on your mat or you sit in your chair and you have a breath practice and that is going to change on a daily basis. It's not about getting the A or, nailing the pose... It's not a pass fail. 99% of yoga or meditation or Tai Chi is actually showing up and doing it for yourself. I feel strongly about that.”   On making peace with your body (20:48) “The idea with yoga is it's actually making friends again. You know, some people say that they're at peace with their body when they do yoga and the idea with the adaptive yoga is you're not identified by your MS. You know, that your MS isn't you, that's not who you are.”   On using the breath as a barometer during yoga practice (31:46) “The other measurement we use in yoga is the breath. And so you always have that barometer, if you will, where if your breath is fast and rapid and shallow. That is a really good indicator of fatigue. If the breath is non-existent meaning holding the breath, that is also an indicator of either fatigue or fear or a need to back off.”   Related Links: OMS exercise videos (filter by “yoga”) OMS stretches to improve spasticity Visit Yoga Moves MS on Facebook, Instagram or YouTube   Don’t miss out: Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.

Marijuana and MS with Dr. Mikhail Kogan | S4E21

Bio:   Dr. Mikhail (Misha) Kogan, MD, ABIOM, RCST is a leader in the newly established field of Integrative Geriatrics.  He is the chief editor of the first definitive textbook of the field entitled “Integrative Geriatric Medicine”, published by Oxford University Press as part of Andrew Weil Integrative Medicine Library series and is frequent speaker at a variety of international conferences on the topics of Integrative Medicine, Geriatrics, healthy aging, as well as medical cannabis.   While Dr. Kogan’s main medical cannabis expertise is in treating older patients and palliating symptoms at end of life he also treats a wide arrange of internal medicine problems from chronic GI problems to cancers where use of medical cannabis can be very beneficial.  In October 2021 Dr. Kogan, in collaboration with Dr. Joan Liebmann-Smith and Penguin Random Publishing House, published Medical Marijuana, Dr Kogan’s Evidence-Based guide to the health benefits of cannabis and CBD. Dr. Kogan currently serves as medical director of the GW Center for Integrative Medicine, associate professor of medicine in the division of Geriatric and Palliative Care, and associate director of the Geriatrics and Integrative Medicine Fellowship Programs and director of Integrative Medicine Track program at the George Washington University (GWU) School of Medicine. Dr. Kogan is also the founder and the executive director of AIM Health Institute, a 501(c)(3) non-profit organization in the Washington, D.C. metropolitan area that provides integrative medicine services to low-income and terminally ill patients regardless of their ability to pay.  Questions:   Background   You have a diverse and impressive background, including integrative medicine, serving as an Associate Professor of Medicine at George Washington University, founder of a health nonprofit, and author. So cutting to the chase, what has gotten you to the place where you’re one of the leading medical experts on cannabis? People have all sorts of associations with cannabis, mostly around its reputation as an illicit substance. Of course now it’s being legalized for recreational use in many places around the world. Can you speak to its use for medicinal purposes? What’s the medical backstory of cannabis? Maybe we can shift to a little rudimentary chemistry and biology to understand how cannabis works medically. Can you provide a layman’s explanation of the human endocannabinoid system, how the cannabis plant interacts with it, and the difference between CBD and THC?   Dispelling Myths   There are a number of perceptions around cannabis and its use, and I wanted to see if we could validate or dispel some of them: Firstly, is cannabis a gateway to harder drugs? Is it safe to use? Are there side effects? What about the argument about how effective it truly is for medical use? Can you speak to the efficacy ranges for cannabinoids? Is there an evidence base to suggest cannabis is effective as a medical treatment?   Cannabis and MS   If we shift the focus to MS, can cannabis be helpful? How does cannabis impact MS spasticity? And what about using it for pain management. Does it alleviate pain that may be associated with MS? So are there any downsides to using cannabis as part of an MS treatment regimen? Perhaps adverse interactions with DMDs? Which cannabinoids should someone be taking to get an anti-inflammatory effect? How do you prescribe or recommend the use of cannabis in your own medical practice? Maybe put another way, how does someone determine if they’re a good candidate to use cannabis medically? The organization behind this podcast, Overcoming MS, is a big advocate of healthy lifestyle choices. How does cannabis fit with healthy lifestyle choice in your view, Misha?   The Future of Cannabis   What is the current research activity around cannabis? Anything we should be aware of down the pike? What does the future hold for using cannabinoids for disease modification? And lastly, your book. You’ve just released a new book called Medical Marijuana. There’s a link in the show notes for more information and where to buy it. Can you tell us a bit about the project, what it’s about beyond what the title implies, what kind of impact you hope it will have? Thanks so much for being our guest on Living Well with MS, Dr. Misha Kogan. We are thrilled to learn about the amazing work you’re doing to help people navigate the intricacies and benefits of medical marijuana. And I encourage everyone to learn more about you and your work by checking out the links and more in our show notes for this episode. Thanks again, Misha.   Links:   Kogan’sbio Kogan’s new book,Medical Marijuana, selected as one of the summer 2022’s best science reads Kogan is Medical Director of theGW Center for Integrative Medicine Kogan isAssociate Professor of Medicine, George Washington University Kogan is Founder and Executive Director,AIM Health Institute, a DC-based nonprofit delivering integrative services to underserved Kogan’s personal website can be found here Kogan can be found on social media here: Facebook and YouTube   Coming up next:   Join us for the 35th installment of the Living Well with MS Coffee Break series, and get to meet Ann Coulson, who has been part of the OMS community even before such a thing existed and has been following the work of Professor George Jelinek dating back to its inception. Ann is undertaking an exciting adventure – sea kayaking around the Isle of Wight – to raise awareness of and funds for OMS. You won’t want to miss this dynamic discussion!   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.   S4E55 Transcript Medical Marijuana   Geoff Allix (00:00): Welcome to Living Well with MS, the podcast from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links.   You can find these on our website at www.overcomingms.org/podcast, or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at podcast@overcomingms.org, or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you.   Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. This episode of the Living Well with MS podcast is marijuana and MS, a conversation with Dr. Mikhail Kogan. Dr. Kogan is medical director at George Washington University Center for Integrative Medicine in Washington, D.C., amongst many other things, and is the author of the book, Medical Marijuana: Dr. Kogan's Evidence-Based Guide to the Health Benefits of Cannabis and CBD.   Welcome to the program, Dr. Kogan, and thanks so much for-   Dr. Mikhail Kogan (01:38): Thank you.   Geoff Allix (01:38): ... joining us on Living Well with MS. Firstly, are you okay if I call you Misha? I believe-   Dr. Mikhail Kogan (01:41): Yeah. Yeah. I much prefer that.   Geoff Allix (01:43): Okay. Excellent. You have a very diverse, impressive background, including integrative medicine and serve as an associate professor of medicine at George Washington University, you're a founder of a health nonprofit, you're an author. To cut to chase, what got you to a place where you're one of leading medical experts on cannabis?   Dr. Mikhail Kogan (02:07): Random and not so random set of events. Well, so I think I always was leaning towards holistic or integrative medicine even before the medical school. That was just given. But in early 2010s when D.C. approved medical cannabis, I started finding myself patients asking me all the time. I realized that, well, I have two choices. I can just follow the crowd, so to speak, or I can jump in it because it felt to me at the time that some of my patients, at least the older patients, could potentially benefit a lot.   Then at around the same time I met Donald Abrams, I don't know if you heard his name, and he's a grandfather of the cannabis research field, if you will, in clinical settings. So he also helped me to establish comfort zone. I think for me, the big problem was not just, does it work or doesn't it not work? It was more around this whole background information. I grew up in Russia. It was thought to be this terrible drug that if you take it once, then that's a life of alcohol addiction, prostitution, gambling, and early death.   This is how we've been told. I think some of this was completely ingrained in me. The hard part was just to kind of get over that and say, "Okay. I'm going to put aside everything I've ever heard about this. I'm just going to really learn it." In the beginning, learning was tough because there's nothing. 10 years ago, the amount of information like a formal learning was extremely limited, so I think I ended up learning a lot of things from a close collaborator I worked with.   Beth Hayes is one of the people who taught me a lot. If you want to say she's a cannahacker. The early cannahackers. After that, of course there started to be a lot more data and a lot more formal training programs. I've taken some courses here and there. I've listened to a lot of experts. I don't actually call myself a cannabis expert, believe it or not, mostly because I integrate cannabis in a very broad spectrum of treatments.   There are people who just do to cannabis and that's all they do. They're cannabis doctors, I'm not, not even close. Cannabis is just one of my skills. I've learned to be comfortable with some parts of it, but there are definitely things that I don't know. Like I don't treat much of kids or I mean, I don't do pregnancies. I mean, I'm not a gynecologist or... So there's a lot of things I don't do and so I don't necessarily claim any expertise there.   MS is one of those things that I do treat. That's why I thought it would be good to talk to you because as a geriatrician and especially as a palliative care doc we see a lot of cases of patients with progressed MS, patients who are older and have MS. So I've learned to be very comfortable with cannabis for this condition.   Geoff Allix (05:24): I think everyone's probably aware of the recreational uses of cannabis, but what sort of medical history is there? Is there a background to it being used medically?   Dr. Mikhail Kogan (05:40): Well, if you go back... And this is thousands of years ago, this is one of the oldest drugs known to humans. China used it more than 5,000 years ago and India pretty much any culture had some use of it in one way or another pretty much. I mean-   Geoff Allix (06:01): This is a medical use rather than the recreational use.   Dr. Mikhail Kogan (06:04): Well, yeah, I mean, I think back then, who knows how those things were... They were overlapping just like now, so somebody would use it for aches and pains, but also would use it ceremonially. I don't know if back then the word recreational was in the vocabulary. There was of course a lot of ceremonial use. Yeah, but we don't really know exactly what they were doing with it. I mean, we think that the Siberian princess story was pretty fascinating.   They found this mummy in Siberia that had breast cancer and there was a cannabis next to her, presumably she was using it topically for applying right in the breast cancer. But those are all speculations. The reality, who knows? But the real documented use that was really documented use was in the Chinese Materia Medica. I think that's what they call it, where it was clearly documented it was part of their standard care for all kinds of conditions.   Then modern times, I think we ought to mention some of the pretty well-known positions. One of them is in your own backyard, used to be in your own backyard, O'Shaughnessy. He brought cannabis from India to England, and first was using it with royalty, with people from the palace, palace folks. Then it propagated from there. In the 1800s, mid-to-late 1800s, it was all over in Europe and America. In the U.S., they were using it as a standard drug.   It was written into a standard [inaudible 00:07:37] of U.S. up to sometimes in the 19th century. It was just a standard medication. Back then, there was not this discussion, does it work? In fact, it's crazy to think about this now, but in 1937, when U.S. government tried, or actually did, institute a tax, it wasn't a huge tax, but it was a tax that basically put most of the medical use of cannabis out of business because they taxed it at the point where consumers said, "Forget, we're not paying for this."   In one little swoop, it was all destroyed. The only organization that spoke against it was the American Medical Association and the commission of the AMA to The Hill basically said something along the lines of, "This is one of the most effective tools for all kinds of medical conditions and it's basically irresponsible to tax it because it is a medicine. It's a drug." That's actually documented in the Library of Congress.   That particular statement that was sitting there as historical evidence that back before prohibition, the standard medical association would say, "It's a drug. We use it every day." And every pharmacy was carrying it. It was sold left and right. They were combining it with morphine tinctures. They were combining it with all kinds of other things that for now, for them, for decades after we were like, "Oh my God, this sounds scary." No, it's not.   It's just we have forgotten. We're coming back to well-forgotten things and we're trying to now prove their efficacy again. It's like spinning the same wheel again and again, but it has to happen.   Geoff Allix (09:31): Now that we understand a lot more about how things work, could you explain a bit about the chemical, biological side of how the endocannabinoid system works and what actually happens and the different cannabinoids as well? What's the difference between CBD and THC and what is actually going on now that we do have some understanding?   Dr. Mikhail Kogan (09:56): Yeah, yeah. Sure, sure. By the way, so while we were using cannabis for thousands of years, but the actual understanding of how it works and what it does is relatively fresh. I mean, the THC was discovered in the 60s, same with CBD, but the actual endocannabinoid system, that took another 20 years or more. It took a pretty long time to get to a point of understanding, and I have a strong suspicion that we're only in like baby steps, that we are going to learn way more.   But not to go into this topic too much, because in itself it's a whole system of medicine really. The listeners can think of it this way. We always talk about the endogenous opioid system. Our body produce morphine-like equivalents and that controls pain and that makes us feel euphoric or feel well. Well, turns out there's what we call an ECS, endocannabinoid system. Instead of THC, which is what the plant produces, tetrahydrocannabinol, we have 2-AG and anandamide, so those are the two primary.   There's actually a lot more, but those are the two big ones specifically, and the anandamide, which in Sanskrit I think means bliss. Those are the internal molecules that work like a lock and key. You put the lock in a key and you open certain pathways, you trigger certain things to happen. There are big categories of things that can happen when our own endogenous cannabinoid system gets triggered or activates itself.   One is that we of course can't control the pain similar to opioids. But the bigger one is thought to be a couple of other things. One is neurotransmitter regulation, so we can control excitation or neural excitation with cannabinoids. That's one of the key reasons why cannabis is thought to be so critical in trauma resolution and that's why so many patients with post-traumatic stress disorder are heavily using it because it's the most effective tool that makes perfect theoretical sense.   Since our own system controls the trauma response, why wouldn't the exogenous molecules do the same? They do. There's no question really about that. That's one big one. There's a very strong regulation of immune system, and that actually is important for MS. There is more and more understanding that cannabinoids, endogenous and exogenous can regulate the immune system appropriately. That is very complicated by the way. It's not just based on... Because nervous system can also regulate the immune system.   It's a lot more complicated. There are other direct immunological receptors and immunologic pathways that can be regulated. Some molecules in cannabis, like CBD for example, have very strong neuroprotective and immunomodulation in the Petri dish. Now it's a little different in humans and animals. There's just not that... I mean, there's a lot less understanding yet, but it does seem to have those effects that I just mentioned.   Geoff Allix (13:16): Is there double-blind placebo controlled-   Dr. Mikhail Kogan (13:20): No. That's what I'm saying. No. There isn't.   Geoff Allix (13:23): All right.   Dr. Mikhail Kogan (13:24): Yeah. These are basic theoretical works. Some of them are in Petri dishes, so what we call in vitro, some of them are in a small or larger animals, but in terms of an actual human data, there's not a lot. I think what's really missing from human data is a combination of clinical data. I give THC to a patient with pain, the pain gets better. We have a little bit of that. Well, actually we have some of it, but then what actually happens on a mechanistic level at the same time?   Parallel studies doing both clinical, but also deeper dive into the physiology of change are few and far in between. But there is an explosion of that. There's an explosion of interest. There are explosions of studies. I actually think, Geoff, you mentioned that England is more conservative. It may be clinical, I don't know. I don't practice there, but I would say in terms of research, you guys probably are a little bit in a way ahead of the pack, because actually there's a lot of studies coming out of England.   U.S. has had cannabis as a schedule one. What that means... A DEA schedule one. It means that as a physician, I have to get a very special license to study cannabis and I cannot, under any circumstances, obtain actual government funding to study its benefit. I can only obtain government funding to study toxicity and side effects. That set us backwards decades. We would've been way further ahead.   Only now in the last few months there's been shift that now at least government says, "Okay. Fine. We're still not going to allow you to study benefits on government funds, but at least what you can do, at least we're going to give you access to more products." Because in the past it wasn't just, I can't study the benefits. That was one issue. The other issue was, well, you only get like two/three products that somebody growing out there, like specific... Those products are like back from 70s and nobody uses them in the real life.   You go to dispensary and you... We just talked before the... Right? You went to Seattle to check those things out and there's hundreds of products there. That's what's in real life. But studying that real life has been very challenging because of the legal status. Now, what's going on in England is of course the Sativex and Epidiolex have been available, which are the pharmaceutical-grade extracts of nabiximols what we call it. It's a direct extract of the plant, a different ratio.   THC and CBD one to one with Sativex and pure CBD with Epidiolex. You have drugs and then drugs are a lot easier to study from a legal perspective. Now in the U.S., we actually only have Epidiolex and everybody is really interested in studying more with THC because CBD has some great things that it can do, but it's highly limited and really as I often joke, [inaudible 00:16:43]-   Geoff Allix (16:43): We have a strange situation in the UK where theoretically, you can be prescribed Sativex but there's the National Health Service, which is broken down into regional units, and the proportion that actually do prescribe it is tiny. For example, I can't get Sativex. In Wales, you can get Sativex but there are very few places that actually do prescribe it. Just to come onto actually why they don't, because we have a large moral side to this that a lot of the print press say that cannabis is a gateway to harder drugs. I don't know if this is an area where you would have any knowledge. Is it a gateway to harder drugs? Is it safe?   Dr. Mikhail Kogan (17:32): Oh no, no. This is such BS. I'm sorry, I'll be so critical. This is like what we know. The data is very clear. It's not a gateway. It's an exit drug. There's no question about it. I mean, there has been study upon study in U.S. and for me, I'll tell you why it's so critical. I'll come to that in a second. There's been multiple studies to say, "If the state approves the cannabis..." And it doesn't even matter for what condition, because once it's approved, people can say, "Look, I have cancer."   But they're going to use it for... Nobody controlling that. Right? Once they have access to it, they can use it recreationally for what they care. What we know, this is a practical data, this is why I was so critical. The moment the state approves the cannabis, you see a dramatic decrease in medication use. We are talking here, listen to the data, more than a million prescriptions per day, or more than a million drugs taken per day per state that has legalized it.   That includes opioids, benzodiazepines, and a bunch of other drugs. In essence, the sleep aids go down, pain use medications go down. The data goes like this. Not only is that the total amount of opioids goes down in some massive amount, but you have 30 to 40% decrease in mortality related to the opioid toxicity. Now think of it this way, in America, every year, you have tens of thousands of deaths from direct application of opioids or indirect toxicity, both.   If you can save 30%, I mean, we are not talking about a few deaths. We are talking about tens of thousands of lives every year saved if cannabis gets approved and yet there are still politicians who say, "Oh, you take it once and you're done for." It's very unclear to me, why is this still happening? Because the data is out there. I mean, I'm talking about studies in JAMA, New England Journal of Medicine. I am not talking about some obscure medical journals.   I'm talking about researchers who are NIH-funded, main institutions of United States of America. Yet we are not moving. I'm guessing... Or well, my father used to joke. It takes like literally generations to die out before academia and politics shift. I think it's actually even more than that. I think we have an institutionalized fear and institutionalized racism related to it and nobody wants to give it up.   It's comfortable to say that, "Oh, only Blacks are using this because it's bad for them and they're getting addicted and all of that." It was very good strategy to use as a tool for racism, and it's still the same way. It's changing very slowly and there is an attempt to maintain the status quo. What shocks me is that usually in medicine, when you have data of the magnitude I just mentioned, that usually shifts the needle within, I would say a decade.   We are not seeing that. The studies I mentioned, first of them started coming out 10 years ago. Like 2012 was one of the first studies to say if particular states that have been early adopters of cannabis, they've been seeing dramatic decrease in mortality related to the opioid use. Subsequently, we have better data. The data after that would be more precise, it would say, "Okay. Well, so this how many less prescriptions of opioids are taken per day? This translates to X amount of an actual decrease in mortality."   Now that data is also about five years old. Why are we not seeing any political discourse? I talk about this at every corner, because I believe that it has to be brought up as a universal tool for pain, and with that, we're probably going to see a massive drop in use of opioids. Of course, I don't really care about saying this-   Geoff Allix (21:51): I think what's happening in the UK is that... I mean, so here it's illegal essentially but I know I could buy cannabis today because I walk with my dog and I go past and there's a field where there's a bench and quite often there's kids there or teenagers there.   Dr. Mikhail Kogan (21:51): That are smoking. Yeah.     Geoff Allix (22:10): I can smell they're smoking cannabis. It's distinctive, isn't it? I know that I could probably... But the thing is, if I then find out who the dealer is who's supplying them, almost certainly that would be somewhere where I could also buy cocaine, MDMA, LSD. That's really in my mind where it becomes a gateway, because actually you're forcing people who want to use cannabis to go drug dealers [inaudible 00:22:36]-   Dr. Mikhail Kogan (22:36): Right. Right. Right. But we are not talking about that. I mean, we are talking about a medical tool. I'm actually... I'm having a great time because I didn't realize that England is so backwards actually, because in U.S., most of the states by now have approved medical. There is no question that within less than decade, we're going to have an entire country approve it just because of money.   The governments of the states, they're making so much revenue on taxation that everybody wants it. This is one of the few universally bipartisan issue in every state that gets passed through every state legislature with no problems because they want it. I mean, both sides say, "Hey, we need money, so let's get cannabis through because we need to fill up the coffers."   Geoff Allix (23:26): Yeah. I believe we're one of the biggest producers of medical cannabis in Europe, but not-   Dr. Mikhail Kogan (23:26): Probably.   Geoff Allix (23:31): But it's exported.   Dr. Mikhail Kogan (23:33): But it's exported.   Geoff Allix (23:34): Which is insane.   Dr. Mikhail Kogan (23:36): Yeah, it is. It is. It's... Yeah.   Geoff Allix (23:38): To come onto MS specifically, can cannabis specifically be helpful for MS and what help could it be? Would it help things like spasticity of the brain?   Dr. Mikhail Kogan (23:49): Right. Right. Well, when I was preparing for this, I thought of doing a couple of things. One, of course people can go to my book and there's a whole chapter that I kept it open here on MS, starting on page 190. We talk a lot about symptom management in that chapter. That's the first part. The first part is multiple sclerosis of course is characterized by the spasticity and chronic pain from that spasticity.   The cannabis for that is proven. It's not just proven, maybe. It's undoubtedly proven. What's not a hundred percent clear is though what should be the best products to use? We think that the daily dose of THC for MS needs to be somewhere high in contrast to some other conditions. For MS, you probably need somewhere between 20 to 50 milligrams of THC per day in whatever the form you need to take it in.   But what's not clear is okay, well, is the cannabis itself, medical cannabis as a whole, plant extracts or smoking or vaping or whatnot, better or worse than let's say an oral medication? Whether it's Sativex or whether it's Marinol in U.S. or whatnot. That's not very clear. There have been very few side by side studies, but what we do know for sure that somewhere close to half of all the patients with MS using cannabis, they often don't report. That's also known, and they generally universally say it's helpful.   Now, is that randomized trial data? No, it's not, but it's in such mass that there's no doubt in anybody's mind. Whoever takes care of as a provider... Myself included, takes care of patients there's no doubt that it's effective. Question becomes, okay, safety versus effectiveness. In medicine, you always do no harm. Yeah, if somebody's smoking cannabis and they have MS and they already have spasticity and their lungs may not work very well, is it smart? Probably not.   You may want to consider giving them something under the tongue or oral preparation so they don't put potential toxic substance on inhalation into their lungs. That's one domain. The bigger question in my mind, and this is a very radical thought process here. Can cannabis play the role in disease modification of MS? Meaning, can people take certain formulations of cannabis that will actually slow down or even reverse progression of MS?   I'm not afraid of saying that because what I'm trying to say is this, there seems to be a very strong signal in every neurodegenerative condition, whether it's Alzheimer's, Parkinson's or MS or ALS for that matter, that the cannabis plays a role. What we don't know is this, okay, if I have a patient in front of me, what should I give them to help their disease process not just their symptoms? To help their symptoms, we've already been doing it for decade plus.   Now, can I do something to them practically to alter the course of MS? The answer to that is we don't know, but we think, yes. The data from control trials doesn't exist, but we seemingly have preliminary data from in vitro studies and also small animal models that says, yes, just like with cancer, we're seemingly able to affect the disease process itself. If you think about this, it makes a lot of sense, because you have to think about what is MS?   Well, it's a neurodegeneration and it's characterized by a strong inflammatory state, neurons die and the spasticity forms as a symptom, not necessarily that that's a pathology in itself. Different cannabinoids... And there's more than one. There are probably dozens if not hundreds, that actually have those neuroprotective and anti-inflammatory properties. How much should we take? Should we tell all patients, everybody should take 200 milligrams of CBD per day? No clue.   This is why I think the future of the next decade should not concentrate on, does this work or not? Okay. There are tons of skeptics. There are people saying, "Well, only oral medications work. There's no data that cannabis works." I don't care. Patients are going to be using it. Those experts can say whatever the they want. That train is so far gone and they're so in the past that just they're in academia and they think that they know something. It's just nonsense.   The question is, what should the study designs look at in terms of an actual disease modification? Here, I have certain opinions. First of all, I feel strongly that the minor cannabinoids, we're not talking about CBD and THC, we're talking about rare things or less common things, acidic forms, so CBDA, CBGA and THCA. Those tend to be very potent anti-inflammatories, all three I mentioned, and what dose should we give them? That's one critical aspect.   The second aspect, we also know that there's a whole bunch of other cannabinoids like CBC, CBG and CBN and a whole slew of them. What should the ratios be and what should be the target dosing? Like with cancer, some thought process goes around like this, don't worry about particular cannabinoids, pick some basic ratio and then give as much as a patient can take in. Okay. That is one way to think, has no evidence to support that, but that's a way to think, because we know that from animal studies, there is a certain threshold.   For the symptoms, your mantra is start low, go slow, deliver where it needs to go. For the disease modification it's a different model. It's what is the minimum dose that's required to start altering particular process? We just don't have the data. We think we do, and there's a lot of experts way over my pay grade who say, "Look, not only do you need to titrate it up like crazy, but you also need to give different routes at the same time, because they do get in differently and they do trigger different things slightly." It gets quite complicated very quickly. The bigger issue is also partially practical. THC dosing can be quite limiting because of euphoria or-   Geoff Allix (30:38): That's what I was going to say, because I think... I mean, personally, if my spasticity was resolved, that would be the biggest single improvement for my life at the moment, but-   Dr. Mikhail Kogan (30:50): That's for the moment, but the disease is still progressing.   Geoff Allix (30:53): Well, yes.   Dr. Mikhail Kogan (30:54): That's the problem, you know? That's the thing.   Geoff Allix (30:56): But if you went for a high THC, that's the thing that makes you high, isn't it?   Dr. Mikhail Kogan (31:01): Correct. I think-   Geoff Allix (31:01): Is there any way to alleviate?   Dr. Mikhail Kogan (31:05): Yeah. That's why I mentioned the ratios because most of us would say, yeah, we know that the THC has a ceiling and I mean, yes, there are some people who can take crazy amounts and function, but an average person, they wouldn't want that. You'll get them to a certain limit. You'll spook them off and they won't go back to it because it's too altering. You can get most people tolerant and so you can gradually titrate the dose and keep titrating and they get more tolerant.   That's one way to do it, but actually a more common way we think at practice is the ratios. We would put more of other cannabinoids, not THC. More CBD, more CBDA, more CBG, more CBC. Then we would say, "Look, when you give all those other non-psychotoxic, that's the word, cannabinoids, you can add some THC in there for the synergistic effect."   Of course, there's also what we call an entourage effect, which basically means, okay, if I just give, say Sativex which is pure THC and CBD and nothing else, there's no terpenes in there or nothing. If I give that versus if I give the same exact concentration of a dose, but I keep everything else that originally was in the plant inside of that prep, whether it's a tincture or an on oil, whatever, we... Not think, we know that the efficacy of that is way, way higher.   It's probably somewhere two to one, or maybe even three or four to one. I need to give way less of a dose of the full extract oil than the Sativex. That data has been around for quite some time. Now, that doesn't necessarily mean I know how much to give a particular patient to cause the disease modification. It's simply a base understanding of what's out there in the market and what we are using.   But my next big project is really to look into some of these neurodegenerative conditions and try to say, "Can I figure out particular ratios? Can I titrate it up and see what I see?" The problem is that work like this tends to take a lot of time because these conditions are slow. They're not like cancer where you can give somebody a couple of months' supply and if the cancer changes, that's it.   The neurodegenerative conditions, they take years to evolve. They're very slow. Assessing whether something is effective, requires very sophisticated tools and a lot of time. That causes just pragmatic challenges to-   Geoff Allix (33:51): And just nothing happening can be a benefit.   Dr. Mikhail Kogan (33:54): Actually, I argue this. We have this very large Alzheimer's program and I argue with so many family members. They're like, "So when am I going to see an improvement of my..." I'm like, "You're really not understanding this, are you? Praise God that your loved one is not getting worse." I mean, that's all we... First step. I mean if we can get them better, great, but that's the first step. It's actually this whole slew of these neurodegenerative conditions.   In one way, they are a blessing because they're slow. The family have a lot of time to adapt, but they're so disfiguring from a mind perspective, then people gradually lose themselves. You watch them deteriorate, not just physically, but cognitively and mentally. In few years, you may not even recognize that the person with you is the same person you always loved. That part is extremely hard.   I think we have to research cannabis very aggressively because the signal is undoubtedly there. I have no doubt, I have zero doubt that within few decades, the cannabis will be at the forefront of curing these conditions. Why am I saying this? Well, because actually we know what happens in the models of all these conditions and MS is included. The cannabinoid system gets completely dysregulated, and the further condition progress, the more that dysregulation occurs.   Now, somebody could ask me an obvious question. Well, how do you know it's not a secondary problem? Like it just occurs because the disease is there. Sure. But we also know that if you take an animal with those conditions and you give them replacement, they seem to do better. The animal models are faster to study, like especially mice. I mean, mice models of Alzheimer's and MS are pretty easy to study because they're rapidly progressing compared to humans.   We know that it's there. Again, as I said, we just don't really have actual controlled clinical data to guide our patients into particular treatment protocols. That's the painful part.   Geoff Allix (36:12): You've mentioned some things where it might have effects which are equivalent to disease-modifying therapies, and in much of the world an MS patient could actually go out and try a variety of different cannabinoids and find one that works for them. But is there a risk that could interact with a medical, like a drug-based disease-modifying therapy?   Dr. Mikhail Kogan (36:44): Sure. Sure. If somebody thinks that this tool has no problems, they're completely wrong. I mean, just like anything, I always joke, you eat cucumbers, you will die. It's like everything has some toxic side effects. The reality is that while we don't think anybody can die from overdosing on cannabis, unless you run the car into a tree or something, but you're just not going to die from overdose. That doesn't mean there's no problems.   The THC has a lot of different side effects. Dizziness, dry mouth, memory loss in young people, some increased risk of paranoia and all those things. There's no question, but there are also some other big concerns. Could there be drug-to-cannabis interactions? A lot of people with MS of course take a number of medications. Could they be interacting with cannabinoids? The answer is yes. The good news is that the answer is yes, mostly theoretically.   We're not actually in practice seeing those interactions. We have a lot of people taking different cannabinoids, including high-dose CBD, which is actually the biggest concern. The biggest concern with the interactions is not the THC, is that the CBD in the liver it affects the liver in a way that it causes the drug-to-cannabis interactions or drug to CBD interaction. It's a really big concern for example, for patients on a high-dose Epidiolex and CBD with seizures. But at the same time in practice, we're not seeing that. We're just not really seeing what we see with other medications. We see a lot of drug-to-drug interactions in actual hospital, or somebody shows up into emergency room with toxicity because there is an interaction. We're not really seeing that. Why? I don't know yet. Maybe it's because we haven't reached the critical mass to yet see. Maybe it's because those interactions are theoretical but not practical, and that's what I actually believe.   I think some of those interactions are going to occur at such high doses that it's just people are not going to take that much, at least not yet, for now. I think the other big issue is are we worrying about quality of the products and are we sure that what our patients are buying is safe from other perspectives? I mean, right? Because it's an extract. If it's not well regulated, if it's not well checked, how do you know they buy what they pay for? How do you know there's no toxins? I'll give you one example. I don't know. You guys probably don't know this, but in U.S. we have this delta-8 THC craze, have you heard about that?   Geoff Allix (39:30): No.   Dr. Mikhail Kogan (39:32): Yeah. It's basically a metabolite or isolate of the cannabis. You can actually make it from CBD or from hemp. You can start with a non-cannabis... Well, hemp is cannabis, but little THC in it to begin with and you can make this product called delta-8 THC. It's not as potent as THC, as delta-9 THC, which is an actual THC, but it causes a lot of problems because it seemingly works identically to THC in terms of recreational use. It's just not as potent.   But to make it, you have to extract it from large volumes of hemp and almost every product that's been researched, looked up out there in the U.S. market, has toxins. We're not talking about some mild toxin. We're talking about heavy metals, we're talking about organic pesticides, residues and all kinds of stuff. So how do you control it against that when the market itself is like a wild horse running out there, you can't even catch it anymore? You constantly retract.   Congress here in U.S. is trying to say something about it because delta-8 is... Okay, for full disclosure, I tried it and I'll tell you, yeah, it's not as potent, but it's potent enough that if you take enough, you're going to get pretty much a similar effect as THC. I bought it. Like I walked into the store during a holiday with my 13- and 15-year-old kids trying to buy... Like I wanted to buy CBD tincture oil for my dog and I saw the delta-8 and they sold it to us. My kid was right next to me. I said, "Wait, go back. Let's see what..." He went back and they would've sold it to the 13-year-old.   Geoff Allix (41:20): 13-year-old.   Dr. Mikhail Kogan (41:22): 13-year-old. They would've sold delta-8 because it's a hemp product. They don't even think of it as a something, but it should really be just like THC, controlled and dispensed appropriately. We have this kind of government legal logistical nightmare in U.S. Sounds like you guys are not anywhere near that yet, but it'll reach you. It'll reach you. It's interesting to see how all of that evolves because now there's delta-10. Now there's this THCV, THCO.   There are all these other new molecules. They're not really new. They're new to market. They've been known, but they haven't been sold out on the market. A lot of what's happening is wild experimentation if you will. Certain pearls will come out of it. I'm always worried that this will negatively impact the field in the long run because it'll trigger some kind of a negative, large backlash because we're going to have some problem.   Like right before COVID hit, we had this epidemic of EVALI. It was basically bootlegged cartridges for vaping that were causing this massive lung inflammation and some people, kids, young people died. It wasn't from the actual cannabis or the tobacco. It was some kind of a preservative or something in that concentrate that activated this inflammatory cascade in the lungs. It's growing pains for the industry and for the patients, it translates in the U.S. into a logistical nightmare because doctors don't know anything about it.   That's actually a really big point. Most of the neurologists are clueless or what they do know is so little that it's completely irrelevant to their patients. They just know like, okay, maybe they shouldn't smoke or something, but they really don't understand the details at all. Patients have to go find the cannabis experts on their own usually. By the way, that was one of the main reasons why I decided to write the book.   The whole story here is that my patient connected me to a professional writer, Joan. Joan approached me first and said, "Hey, let's write something." I said, "Sure." We went to the publisher. I wanted to write the book for the older adults on this topic. They said, "Ah, forget it. We need a general book. It's too small for..." I said, "Okay."   But it was Joan's idea. Say, "Look, you have to write it in such a way that there's an actual protocol so that the doc could buy it or the patient can give the book to the doc and say, "Here, this is what's working for people. Can I try it?" I know that it'll get outdated in no time, but at least for time being, it's going to actually help a lot of providers because they're going to read this, and it's pretty simple to read, and they're going to understand at least some basics. Now, of course there are textbooks on the topic and bigger texts with a lot more detail, but often physicians they're not going to learn a whole brand-new branch of medicine just because they're just going to follow their patients.   Geoff Allix (44:40): There's links in the show notes to the book. Yeah, just released called Medical Marijuana. You said a little bit about it, but so is it useful for both doctors and patients as well? You'd recommend?   Dr. Mikhail Kogan (45:01): Yeah.   Geoff Allix (45:01): Is it worth a read for everyone?   Dr. Mikhail Kogan (45:05): It's worth a read for everyone. I mean, of course, if you're already more than an expert in cannabis this is totally too basic for you. But if you are curious about this topic, if you have a condition which you think... MS for sure, if you think that this may be helpful, the book is really for you because it's written in a way that a lot of cannabis books are not written. A lot of cannabis books are written either as desk references, which are very hard to read and their protocols are really not there.   They would summarize the studies, they would say, "Okay. Well, this study showed this." For patients, that's not relevant. Patients want to know, what should I do today? I don't care about the study. I want to know what works and what doesn't. This is what we did. This is a book written by a clinician for patients and his colleagues. That's basically what I did. I took only conditions where I felt evidence is sufficient and my knowledge is sufficient to give specific recommendations.   I avoided some controversial topics, but I also avoided topics where I simply don't have enough expertise, so of course the book is superficial. But it's deep enough for those conditions that I covered that I think people who have those conditions who are going to open the book are going to find it useful.   Geoff Allix (46:24): You mentioned wider integrative medicine. Would you say that it fits as part of that jigsaw? Because certainly Overcoming MS encourage healthy lifestyle, so healthy diet, mindfulness, taking medication as necessary and so on and so on. You'd say it's one of those pieces?   Dr. Mikhail Kogan (46:45): Yeah. I mean, absolutely, and the beauty of MS, if there is such a thing, is in contrast to Alzheimer's and Parkinson's, the chances of a complete cure are much higher. I have seen a lot more patients with MS get rid of their disease completely or put it in a permanent remission. We can't really say cure here because I think if you stop doing what you're doing, it'll probably come back, but it's a permanent remission.   As long as you're gotten better and what you did that’s integrative with lifestyle and other things worked and you keep doing this, the disease is basically non-present and you're living a normal life. That's the goal. It's a lot harder to do for Parkinson and Alzheimer's, I'll tell you that. But yeah, and it fits perfectly because, well, it's botanical... right? It's already a natural product, so to speak, but it also fits perfectly because it provides me a set of tools that certain things don't.   Generally, integrative medicine does not have a lot of immediate relief. Certain things like acupuncture for spasticity, for example, have some evidence, but generally it's a slow medicine. We give tools that gradually make people better. But if they come to me and they have pretty bad spasticity and pain, I can't really work with them unless I help them to get at least that a little better, otherwise they won't be able to exercise. They won't be able to eat.   All they will think about all day long is how do I get my pain improved? Right? But the cannabis offers that too. It's often that bridge between I would start the cannabis for certain things and say, "Okay. Once you're a little bit better, that's when the work begins. That's when I'm going to put you on a better diet, that's when you're going to start exercising, that's when you're going to start meditating and doing other things."   It takes time but I find that my practice improved so much because when I do it that way, patients start trusting me and they actually stick longer, because the big problem with our approach, I’d say people tire out. They're not really seeing immediate result and they just give up. That's-   Geoff Allix (49:00): Yeah. It's a difficult one. You sort of say to people like, "Improve your diet and exercise and mindfulness." They say, "Well, I've been doing that for a week and I've not noticed any difference." You're like, "No, you're looking at like six months or give it a long time before you [inaudible 00:49:18]."   Dr. Mikhail Kogan (49:18): Yeah. Yeah. Yeah. Because cannabis can cause shifts rapidly. I mean, I find... And I used to talk a lot about pain control, but I'm actually now talking just as much about sleep. A touch of THC with some CBD, or just pure low dose, you can have profound shifts in the sleep improvement. You can take somebody who has been sleeping poorly and because of that their energy is down, their pain is worse and everything's worse.   You start them on a touch of THC at night and you massively improve them within a week I'm talking. I mean, I'm not talking about months and months. That sometimes gives people so much instant cognitive and overall boost, the energy boost to start doing more things. That's what I find because the motivation is critical. Often, especially in neurodegenerative conditions, motivation is a huge problem. Because people already are coming in, they may have been sick for many years, they don't believe that they can get better.   They're just in the existing mode of operation, but they can't think of a better something. You shift them suddenly and they're like, "Oh, wow, I actually can feel that much better? Okay. Well, I better listen to this guy because he just did this." I think it shifted my practice significantly because of that.   Yeah. I find it a little ironic and often funny how five/six years ago, even more close to 10 years ago, I would have very difficult conversations with experts, with like neurologists, for example, who would say, "Oh, cannabis, you're going to make my patient addicted. They're dying anyway. How could you do this?" Now conversation's like, "Oh, when can you start them on this stuff?" Because they're also seeing the shift.   They don't do it themselves just yet, but they're realizing the value and they're sending me patients. I mean, they're like, "Well, what should I do with this particular patient?" It's really interesting how I'm seeing the shift not yet on the level of everybody knows how to do it, but everybody's trying to find somebody in the community who knows how to do it, which is great. Our next big step is to actually train every medical student.   I think they all should come out of medical schools, and not just medical students, nurses, and everybody, to say, "Look, I know a little bit about it. I can do some basics." That would be the day. Now, of course sounds like you guys are a little behind, but I have no doubt you'll get there. I think places like Israel, for example, or there are several countries, Canada, Israel, that nationally approve the cannabis. They're a bit more ahead of the game because they actually have larger groups of providers who've been in this for a long time.   But the U.S. is definitely on top, and definitely top three because we have so much business interest in this and so much patient interest that there is just a market for people who can call themselves cannabis docs. I don't call myself a cannabis doc. If you go to my clinic sites, either of them, you see a little bit in my bio, but we're not advocating that we're just giving cannabis to everybody. It has more to do with the fact that I use integrative medicine as a concept.   I try not to just substitute things. This is really important. I mean, we have a term for this called green apathy. When you take people away from the drug onto the botanical, it's okay. It's actually a good thing for certain things, but it's the principle that matters more. You want to simply teach patients to take care of themselves better. That's really the biggest aspect. If that means that cannabis has an exit strategy there to help them get off of something so they're onto something else, I'm all in. Yeah.   Geoff Allix (53:31): With that, I'd like to thank you so much for being our guest on Living Well with MS, Dr. Misha Kogan. We're thrilled to learn about the amazing work you're doing to help people navigate the intricacies and benefits of medical marijuana. I would encourage everyone to learn more about you and your work by checking out the link in the show notes. The book is available from all major... Well, there is one massively major book resource on the internet, which everyone knows of, but I'm sure it's available in all the others as well. I checked out that one.   Dr. Mikhail Kogan (54:02): Yeah.   Geoff Allix (54:03): I'm sure it's widely available.   Dr. Mikhail Kogan (54:04): It is available in Audible and I'm proud of the person who recorded it, so [inaudible 00:54:10]-   Geoff Allix (54:10): Is it you or not you, or?   Dr. Mikhail Kogan (54:13): No. No, no, no, no. No. English is not my first language. There was a professional actor who did the recording. It's really well made actually.   Geoff Allix (54:23): Okay. With that-   Dr. Mikhail Kogan (54:23): So listen in.   Geoff Allix (54:24): Yep. Thanks very much for joining us. Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode.   Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising-free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups, and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.   The Living Well with MS family of podcasts is for private non-commercial use and exist to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS Charity, its affiliates, or staff.

Coffee Break with community member Leah Tsirigotis | S4E20

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