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

September 20, 2022 - 20 MIN

FUMS 115 - MSer Sue Casey says "Grab The Happy!"

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If you're connected with Multiple Sclerosis in any way - whether you're a patient, or a caregiver, family member, or loved one of somebody with the disease - it's easy (and NATURAL) to live in the what-ifs. We can all wallow in the n.. Read More
If you're connected with Multiple Sclerosis in any way - whether you're a patient, or a caregiver, family member, or loved one of somebody with the disease - it's easy (and NATURAL) to live in the what-ifs. We can all wallow in the negatives - hey, there's a reason why this podcast is called FUMS! But Sue Casey, my guest today, tries to live by a different mantra - "Grab The Happy!" Sue has been living with MS for nearly 50 years. This means that when she was first diagnosed, they didn't have MRIs or any of the procedures that we all experience today. And Disease Modifying Therapies? Forget about it!  Even though her neurologist told her to never get married or have children, Sue has lived a full and happy life and as her MS has progressed, she has learned to appreciate the small things. And whenever I speak to her she just exudes kindness and love. As you'll hear, Sue has not had it easy, so her positive attitude is hard-won. And, listening to this, you might not be ready to adopt even the smallest part of this mindset. But at some point, you do have a decision to make, and I hope you'll be inspired by Sue's approach to life with MS. Topics covered in this episode include:Sue's life before MS, her initial symptoms, and the story of her diagnosisHow the diagnostic procedure looked in the time before MRIsSue's limited experience of DMTs The progression of Sue's MS, and how she chooses to look for the positives in her life Full show notes and resources at https://fumsnow.com/fums115/ 
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September 06, 2022 - 53 MIN

FUMS 114 - The Art of Rebellion With Kick-Ass MSer Lydia Emily

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Content warning: this episode includes a discussion about Lydia's personal experiences of Primary Progressive MS and her plans with regards to Death with Dignity, aka Suicide. Lydia Emily Archibald is an artist to her core. She was .. Read More
Content warning: this episode includes a discussion about Lydia's personal experiences of Primary Progressive MS and her plans with regards to Death with Dignity, aka Suicide. Lydia Emily Archibald is an artist to her core. She was born in Chicago to globe-trotting activist parents, and this laid the foundation for her socially-conscious and politically-motivated artworks, including the creation of large-scale murals. Lydia Emily's work has been featured at gallery shows in Milan, Berlin, Los Angeles, New York, Miami, Washington DC, and San Francisco.  After battling cancer, Lydia was diagnosed with Multiple Sclerosis in 2012. She later became a spokesperson for the MS Society, sharing the story of her diagnosis and life with MS and her message of hope for others with the disease. Lydia Emily is the subject of the recent documentary The Art of Rebellion, a feature-length film from Bluprint Films directed by Libby Spears. I think she is an amazing person, living an amazing life, and I'm sure you'll agree. Topics covered in this episode include:How Lydia received her MS diagnosis only TWO YEARS after battling cancer!How she started painting and the different materials she has used instead of canvasesThe political and socially conscious art that Lydia makes, the adaptations that she has made, and the team that supports her in the creation of her large-scale muralsThe symptoms that Lydia and Kathy share, and why Lydia thinks the US Healthcare system is trying to wipe out or "cleanse" the chronically illThe plans that Lydia has in place for her death with dignity, aka suicideInformation about the full-length feature documentary about Lydia, The Art of Rebellion Full show notes and resources at https://fumsnow.com/fums114/   
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August 23, 2022 - 20 MIN

FUMS 113 - An Invitation From Dr. Terry Wahls To Be Part of Her Latest Study

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More and more often, we're all hearing and talking about the use of diet and lifestyle as a way to manage chronic illness - and not just on the FUMS Podcast! In this episode, Dr. Terry Wahls (now officially our most featured guest) i.. Read More
More and more often, we're all hearing and talking about the use of diet and lifestyle as a way to manage chronic illness - and not just on the FUMS Podcast! In this episode, Dr. Terry Wahls (now officially our most featured guest) is here to tell us all about how we can get involved in her latest study, which asks a couple of simple but important questions: Can diet improve my quality of life with MS? And which diet is the best?  If you don't know by now, Dr. Terry Wahls is an Institute for Functional Medicine Certified Practitioner and a clinical professor of medicine at the University of Iowa where she conducts clinical trials in the setting of Multiple Sclerosis. In 2018 she was awarded the Institute for Functional Medicine's Linus Pauling Award for her contributions to research, clinical care, and patient advocacy. She is the author of The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles, and the cookbook, The Wahls Protocol Cooking for Life. As you'll hear, Dr. Wahls will be carrying out a long-form study - entitled Efficacy of Diet on Quality of Life in Multiple Sclerosis - which examines how a participant's quality of life is affected by one of three very different diets - Ketogenic, Modified Paleolithic, and usual diet.  And YOU could take part - even if you don't live in the US!  Topics covered in this episode include:Details of Dr. Wahls' new studyWhat aspects are looked at to gauge Quality of Life?How long will the study take? And who can take part?A description of the three diets that will be used, how participants will be monitored, and details of the essential community elementWhere to go to find out if you qualify to participate in the study Full show notes and resources at https://fumsnow.com/fums113/
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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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Hosted By:

Kathy Reagan Young