FUMS is a podcast providing information, inspiration, and motivation for living your best life with Multiple Sclerosis. Join us for interviews with doctors, research scientists, patients, legislators, insurers, neuropsychologists, authors, caregivers, and a long list of others in our pursuit of answers. Learn to speak to this disease as it deserves – tell it “FUMS” every day!

Episodes

August 09, 2022 - 53 MIN

FUMS 112 - Using Pilates to Combat MS with Mariska Breland

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The truth has been out for a long time - exercise is good for MS and other neurological conditions. But of all of the programs suggested for us, how many of them really know what it's like to live with MS? My guest today is Mariska .. Read More
The truth has been out for a long time - exercise is good for MS and other neurological conditions. But of all of the programs suggested for us, how many of them really know what it's like to live with MS? My guest today is Mariska Breland. She was a video producer living a very high-stress life when she was diagnosed with MS at the age of 27. She started doing Yoga and Pilates and eventually began teaching Pilates, ultimately turning it into her full-time job.  Mariska has created multiple neuroscience and exercise workshops, including Pilates for MS (now expanded and taught as Pilates for Neurological Conditions). She is also the co-founder of the Neuro Studio, a Pilates studio focusing on people with neurological conditions, and has even invented her own fitness and rehabilitation equipment! Topics covered in this episode include:Why Mariska decided to focus her business on teaching a type of Pilates that is particularly useful for people with MS and other neurological conditionsHow Mariska's exercise program differs from other MS exercise programs - down to the fact that her methods have been supported by national MS Society in the US and UK and are currently undergoing clinical trials at the University of ColoradoKathy's own experiences with PilatesHow to find out more about Mariska and her work Full show notes and resources at https://fumsnow.com/fums112/ 
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July 26, 2022 - 31 MIN

FUMS 111 - The Owner's Manual for MS with Author Debbie Petrina

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I don't know about you, but when I was diagnosed with MS my medical care team couldn't answer all of my questions. Although, to be honest, the stress and cog fog meant that I forgot most of the questions I wanted to ask anyway. And t.. Read More
I don't know about you, but when I was diagnosed with MS my medical care team couldn't answer all of my questions. Although, to be honest, the stress and cog fog meant that I forgot most of the questions I wanted to ask anyway. And the pamphlets that were forced on me just didn't cut it.  What I really needed was an operator's manual. But that doesn't exist, right? Well… Over the past four decades, Debbie Petrina has lived with MS and spoken to thousands of people in the MS community - via social media, as a trained peer counselor, and as a participant in numerous MS-related events. She is the author of "Managing MS: A Roadmap to Navigate MS", a practical, easy-to-read handbook about understanding and managing MS. Informative and inspiring, it offers guidance and tips on a wide array of topics, including symptoms, people management, and long-term disability. The book is written for anyone who is interested in learning about MS and managing it effectively. With a newly-edited and expanded second edition, Debbie is here to talk about her MS journey, her long history of advocacy, and what is inside this amazing resource!  Topics covered in this episode include:Debbie's experience of being diagnosed with MS in the "Dark Ages" of the 1980sHow peer counseling became Debbie's support network AND her jobWhy Debbie concentrates on lifestyle and wellness to manage her MSThe reasons why Debbie decided to write her book, "Managing MS: A Roadmap to Navigate Multiple Sclerosis" Full show notes and resources at https://fumsnow.com/fums111/
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July 12, 2022 - 38 MIN

FUMS 110 - Using Intermittent Fasting to Manage Your MS with Cynthia Thurlow

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I've talked before about diet and lifestyle as a way to manage Multiple Sclerosis. It's an exciting area, with more research being done all the time! If you've been researching this for any time, you've probably heard about Intermit.. Read More
I've talked before about diet and lifestyle as a way to manage Multiple Sclerosis. It's an exciting area, with more research being done all the time! If you've been researching this for any time, you've probably heard about Intermittent Fasting (IF). But what is it? And how could this possibly help with your MS? My guest today is Cynthia Thurlow. She is a nurse practitioner, the CEO and founder of the Everyday Wellness Project, and an international speaker, with over 10 million views for her second TEDx talk, Intermittent Fasting: Transformational Technique. In this episode, Cynthia explains what IF is, its effect on her own health, and the types of fasts that are available. I also talk about my own experiences of IF. As someone who loves their food, take it from me, it isn't just about stopping eating! DISCLAIMER The information contained in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment. Topics covered in this episode include:Defining Intermittent Fasting Cynthia and Kathy's own experiences of IF - and the positive outcomes they have noticedWhat is metabolic flexibility and how does it improve when practicing Intermittent Fasting? How to eat in order to maximize fasting success, and different ways to fastTips and resources for anyone wanting to try IF Full show notes and resources at https://fumsnow.com/fums110/  
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June 28, 2022 - 43 MIN

FUMS 109 - Real Talk About MS with Jon Strum

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Jon Strum's wife, Jeanne, was an avid biker, hiker, and writer when she was diagnosed with Progressive MS. Almost immediately, she became so severely disabled that Jon stopped working and became Jeanne's carer and advocate. He contin.. Read More
Jon Strum's wife, Jeanne, was an avid biker, hiker, and writer when she was diagnosed with Progressive MS. Almost immediately, she became so severely disabled that Jon stopped working and became Jeanne's carer and advocate. He continued in this role until Jeanne passed in February 2020.   Part of Jon's advocacy was (and continues to be) hosting the popular RealTalk MS podcast. As you'll hear, Jon started the podcast while sitting on a scientific committee as a member of the International Progressive MS Alliance, to bridge the gap between patients and caregivers and the scientific community. Since its launch in 2017 and over 200 episodes later it has been downloaded more than 1,000,000 times by listeners in over 100 countries around the world. Jon's devotion to his wife is moving and unquestionable. But so is his desire and commitment to advocating for all people living with Multiple Sclerosis. Listen in to my interview with this wonderful man and find out about all the ways that you can advocate for people with MS and affect change! Topics covered in this episode include:The story of Jeanne's diagnosis, and Jon's journey into caregiving and advocacyJon and Jeanne's experiences with health insurance, the impact on their finances, and the heartbreaking decision Jon had to make for Jeanne's care Why Jon feels that people with more progressive forms of MS can feel forgotten by the scientific community, and why he started the RealTalk MS PodcastJon's partnership with the National MS SocietyThings that are on the legislative horizon for people in the US with MS, and how you can get involved and put pressure on your representatives! Full show notes and resources at https://fumsnow.com/fums109/ 
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June 14, 2022 - 18 MIN

FUMS 108 - A Cause for MS Has Been Found

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In January of 2022, one of the biggest MS news stories EVER was announced - that MS is probably caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers... Read More
In January of 2022, one of the biggest MS news stories EVER was announced - that MS is probably caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers. Now, this link has long been suspected but here was proof! My guest today is Kjetil Bjornevik, the lead author of the publication that got us all excited. Kjetil is an epidemiologist whose focus is on finding risk factors and better treatments for neurological diseases, including multiple sclerosis. As you'll hear, by opening the doors for future preventative treatments for EBV (one of which is in a Phase 1 clinical trial right now), this report points towards a way to prevent MS and the real possibility of a CURE. Topics covered in this episode include:What led Kjetil to specialize in neurological diseases in general and multiple sclerosis in particularA breakdown of the study and its findingsEBV is one possible (but important) trigger of MS - what are the others?The possibility of an EBV vaccine and the effect this would have on people at risk of developing MSFuture research at the Harvard T.H. Chan School of Public Health that is of interest to the FUMS community Full show notes and resources at https://fumsnow.com/fums108/ 
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Hosted By:

Kathy Reagan Young