FUMS: Giving Multiple Sclerosis The Finger

Kathy Reagan Young
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A podcast providing information, inspiration and motivation for living your best life with Multiple Sclerosis. Learn to speak to this disease as it deserves - tell it FUMS every day!

  1. FUMS 119 - National Lampoon's Chronically Ill Christmas with The MS Pod Squad

    2022-11-22

    FUMS 119 - National Lampoon's Chronically Ill Christmas with The MS Pod Squad

    Being a podcaster can be a lonely life. So what better way to begin the holiday celebrations than getting some of your favorite MSers together to talk about our plans for the season?  Alongside my guests, we talk about some of the things that can play on our minds during this time of year, particularly when combined with having a chronic illness like MS.  Dan & Jennifer Digmann talk about how to handle the stresses of maintaining relationships. Ardra Shephard is here to talk about staying fashionable and feeling good about yourself. Then Kathy Chester covers the different ways that you can maintain your fitness and movement schedule, while Alene Brennan talks about the essential stuff - food choices and cooking! Finally, we all share some of our favorite holiday recipes - link provided below. Topics covered in this episode include: Tools for handling challenging relationships at this time of yearHow to look our best when we're tired, cog-foggy, and stressed? And why should we care?How to find the time and motivation to keep moving and exercisingTips on how to enjoy holiday food without regret - and making yourself feel worseOur favorite holiday food memories and recipes Full show notes and resources at https://fumsnow.com/fums119/

    49 min
  2. FUMS 118 - Comic Artist and MSer Brooke Pelczynski's Perfect, Shitty Situation

    2022-11-01

    FUMS 118 - Comic Artist and MSer Brooke Pelczynski's Perfect, Shitty Situation

    Brooke Pelczynski's life with Multiple Sclerosis is an inspiring example of someone taking their diagnosis and turning it into something great. Most recently, her varied career has led to her working for Marvel Comics! Brooke was undertaking her BFA in Illustration in New York when the fatigue and clumsiness that resulted in a number of ruined artworks was diagnosed as Multiple Sclerosis - at the age of only 21. Although she now feels that MS had crippled her career, Brooke has since used her disease to build a career as an artist, illustrator, and comic-creating multiple sclerosis fighter!  As well as her full-time role providing illustrations for MultipleSclerosis.net, her work - in a variety of forms - has been featured by a variety of clients and publications including Yahoo, Momentum Magazine, Hotel Indigo, Lifewire, and many more. Brooke also worked as a story consultant for Marvel's Darkhawk comic series, using her experiences to inform the title character's own journey toward an MS diagnosis.  Topics covered in this episode include: Brooke's life before her diagnosis with MS aged only 21How, after feeling like MS had crippled her life as an artist, Brooke was able to use comic art to build her careerThe way that Brooke's work for MultipleSclerosis.net fits around her "Perfect, shitty situation" - and how she always strives to remain creative, even on her worst MS days (MSiest?)How she got involved as a story advisor for Marvel's Darkhawk comics  Full show notes and resources at https://fumsnow.com/fums118/

    25 min

  3. 2022-10-18

    FUMS 117 - Mind, Mood, and Memory in Multiple Sclerosis w/ Dr. Anthony Feinstein

    MS is often described as an invisible disability. But as the disease progresses, the focus - of patients as well as medical professionals - can shift to more visible, physical symptoms, like mobility issues. However, because the majority of people with MS are diagnosed in their 20s and 30s, the psychological and cognitive effects can all too often go untreated. And these symptoms are just as common as the outward ones. In fact, as you'll hear, these may be even more common, with 50% of all people with MS having at least one clinically significant episode of depression.  My guest today is Dr. Anthony Feinstein. He is a Professor of Psychiatry at the University of Toronto, where he runs an MS neuropsychiatry clinic and research team. His MS research has focused on MRI-visualized brain changes associated with depression, the development of fully-automated cognitive tests for people with MS, and much more. He is also the author of Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis.  Dr. Feinstein is here to discuss the hidden symptoms of MS that add significantly to the disability associated with the disease, including cognition and mood. He even offers some tips for us all that can help keep our brains active and stimulated! We all know that regular exercise is essential for living well with MS. So don't forget to give your brain a workout too!  Topics covered in this episode include: How an MRI machine led Dr. Feinstein to specialize in Multiple SclerosisWhat Cognitive Behavioral Therapy (or CBT) is and why it is so effective for people with MSHow CBT compares with medication as a way to deal with MS-related mood disordersWays that cognitive decline can be monitored, and the three types of exercise that you should be doing to stimulate your brain!Dr. Feinstein answers questions from the FUMS community Full show notes and resources at https://fumsnow.com/fums117/

    27 min

  4. 2022-10-04

    FUMS 116 - Managing Daily Life as MS Progresses w/Jenn Powell

    My guest today is Jenn Powell. She's an active advocate in the MS community, imparting her hopeful optimism to the real-life challenges facing those of us living with MS. Now with secondary-progressive MS, Jenn continues to elevate the patient voice to better the lives of our community. Jenn is the Brand and Marketing Manager for BioNews, an organization that strives to create dynamic communities that give patients and caregivers a powerful voice. Jenn also writes for Multiple Sclerosis News Today (a subsidiary of BioNews) and is the host of the Multiple Sclerosis Podcast. Jenn's attitude is optimistic, taking each day as it comes, recognizing her victories and being thankful for her gifts, but realistic about the limitations that MS has placed on her. I think it's an attitude that - if we can adopt even a small part of - it will do us, and the people around us, some good! Topics covered in this episode include: Jenn's life pre-diagnosis and her amazing technique for undergoing the dreaded Lumbar Puncture (or Spinal Tap) procedure!Complementary therapies that she uses to help in her day-to-day lifeHer belief that "the script for a day needs to be ripped up and torn apart"Why Jenn felt she had to seek out her support network from outside of her familyThe power that comes from sharing experiences with transparency Full show notes and resources at https://fumsnow.com/fums116/

    35 min

  5. 2022-09-20

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

    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/

    20 min

  6. 2022-09-06

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

    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/

    53 min

  7. 2022-08-23

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

    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/

    20 min

  8. 2022-08-09

    FUMS 112 - Using Pilates to Combat MS with Mariska Breland

    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/

    53 min
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A podcast providing information, inspiration and motivation for living your best life with Multiple Sclerosis. Learn to speak to this disease as it deserves - tell it FUMS every day!

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