FUMS: Giving Multiple Sclerosis The Finger

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 recipesFull show notes and resources at https://fumsnow.com/fums119/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 communityFull show notes and resources at https://fumsnow.com/fums117/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 transparencyFull show notes and resources at https://fumsnow.com/fums116/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 lifeFull show notes and resources at https://fumsnow.com/fums115/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 RebellionFull show notes and resources at https://fumsnow.com/fums114/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 studyFull show notes and resources at https://fumsnow.com/fums113/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 workFull show notes and resources at https://fumsnow.com/fums112/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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!DISCLAIMERThe 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 IFFull show notes and resources at https://fumsnow.com/fums110/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Jenna Green worked for 15 yrs in corporate marketing, when she realized that she had to leave for the sake of her mental health! So she began working freelance - but the hustle culture, combined with chronic pain she experienced following a car accident, led her to a diagnosis of Multiple Sclerosis in 2016.On what should have been her first Tysabri infusion, she learned that her insurance wouldn't cover the treatment. This was Jenna's first experience of Step Therapy or Fail First practices - where, in order to control costs, insurance companies restrict coverage of expensive therapies unless patients have already failed treatment with a lower-cost alternative. And we all know that a failed treatment for MS means more relapses, leading to more irreparable damage, increased disability, and worse outcomes! Jenna is now a patient advocate, content creator, consultant, and public speaker. She has used her experience in marketing to help bring awareness, support, education, and community to those who live with invisible illnesses, chronic pain, and fatigue, primarily on Instagram @thejennagreen. AND she's devoted to helping to change public policy via her volunteer work with the MS Society. GO JENNA!Topics covered in this episode include:Jenna's life before her MS diagnosis, and her experience of Step Therapy or Fail First policiesHer belief that privilege equates to responsibilityThe alternative therapies that Jenna uses alongside conventional medicineHow Jenna became an MS advocate, and how this work makes her feelInformation about Jenna's exciting patient resource about Public Speaking For Patient Advocates (coming soon) Full show notes and resources at https://fumsnow.com/fums107/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

If you listen to this podcast, there's a strong chance that you receive care - from a friend, a loved one, or from within your community. You might also be in the position I was in a few years back, caring for elderly relatives, young children, and myself as a person with a chronic illness!My guest today is Elizabeth Miller, a family caregiver, caregiver advocate, speaker, author, podcast host, and Certified Caregiving Consultant. Her personal experiences of caring for aging parents with chronic and terminal illnesses and for a sibling with developmental disabilities inspired her to create Happy Healthy Caregiver in 2015.Elizabeth's aim is to make caregiving sustainable and prevent burnout by encouraging intentional self-care.Like I said, you might be a caregiver or the one receiving care. Regardless, there are some great tips in our conversation for looking after yourself. And please remember that self-care is not selfish!Topics covered in this episode include:The story of Elizabeth's history with caregiving and what her hardest challenges wereHow sharing her story through a blog enabled Elizabeth to help others in the same situationElizabeth's advice for caregivers and the things which helped her to look after herselfChanges that Elizabeth would like to see in the healthcare systemThe services and support that Elizabeth provides through Happy Healthy CaregiverFull show notes and resources at https://fumsnow.com/fums106/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

"Grace" is a novel about a young woman navigating married life, sex, parenting, and friendship. Plus, the lead character is doing all this while dealing with an MS diagnosis. It was written by Delaney Parker, an author who lives in upstate New York with her family. She was diagnosed with Multiple Sclerosis in October of 2008, and it was her diagnosis that inspired Delaney to write "Grace."As Delaney says in this interview, the character's diagnosis is just a part of who she is, and the novel is not centered around MS. I loved this book's depiction of a young woman who just happens to have MS, and I can't wait for the sequel!Topics covered in this episode include:Delaney's diagnosis with MS while being a young motherHow her urge to be a writer grew out of a voracious reading habitWhy an MS diagnosis is not the main driver of the plot of "Grace"How sharing this story was helpful to Delaney in her own MS journeyWhere to buy your copy of "Grace" Full show notes and resources at https://fumsnow.com/fums105/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Identical twins Tamara Kahn and Terry Hord (née Harber) were born eight minutes apart and were both athletic as children. But they can now look back and see the fatigue and heat sensitivity they both experienced as early signs of the diagnosis to come - along with the trauma of losing their mother to cancer and the Epstein-Barr Virus that they contracted at the age of 15.In their 20s they received identical MS diagnoses, but a history of voluntary charity work led them to create an MS patient advocacy hub called TwinsCoast2Coast. They aim to inspire, empower, support, and educate others about MS, and to simply tell their story, imperfections and all.Despite the aggressive and progressive nature of MS for them both, they continue to create a support system and safe space for the newly diagnosed to land. As they say in this interview, "there is more to life than your disease - and you are not alone."Full show notes and resources at https://fumsnow.com/fums104/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The idea of using diet and lifestyle changes as a way to manage MS was still pretty radical until fairly recently. But as more research is done, the benefits are becoming more recognized day-by-day.My guest today is Dr. Terry Wahls, who has been studying the links between lifestyle and MS outcomes since getting her first symptoms twenty years ago. After being confined to a tilt-recline wheelchair, Dr. Wahls restored her health using a diet and lifestyle program of her own devising.Dr. Wahls previously appeared on the FUMS podcast back in 2018, so I figured it was time to get her back. I wanted to find out about recent clinical findings about the efficacy of diet and lifestyle as a way to treat multiple sclerosis - which is increasingly gaining traction as a recognized way to manage your health! We also talk about the findings of recent studies into Paleo, Swank, and Mediterranean diets.Full show notes and resources at https://fumsnow.com/fums103/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This episode is the second part of my interview with Marty Shenkman, an attorney whose private practice concentrates on estate planning. When his wife was diagnosed with MS, he recognized how different planning looks for people with chronic illness and it changed his whole approach to estate planning. If you haven't heard the first part, please visit https://fumsnow.com/fums101When I announced that I'd be talking to Marty about estate planning with a chronic illness, I was inundated with questions from the FUMS community. So in part two of my interview, we try to get through as many of them as possible. As Marty says, the answers he gives here are for educational purposes only and are intended to give you a broad overview of the issues you might face. They should not be used as a substitute for personally tailored, professional advice. Thank you, Marty, for how generous you were with your time. We've barely scratched the surface, so I'm looking forward to having you on the podcast again soon!Full show notes and resources at https://fumsnow.com/fums102/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This is the first in a series of episodes where I'll be looking at the messier parts of life - estate planning, divorce, digital death, end-of-life planning, wills, etc. Y'know - fun stuff like that. And in true FUMS style, I'm calling the series G.Y.S.T. - "Get Your Shit Together"Sooner or later, we are all going to have to start thinking about what happens at the end of our life - whether we have a lot or a whole lot of nothing, it's a fact of life! And while this is the same for everyone, if we have a chronic health condition there are a whole lot of other considerations. What if I'm unable to stay in my home? What if I can't make decisions about my finances or care? With this in mind, I looked for an attorney whose practice concentrates on estate planning for the chronically ill. I bet you can guess how many results that particular google search threw up. What I did find was a professional with a personal connection to chronic illness - MS, in fact.Martin M. Shenkman (call him Marty) is an attorney whose private practice concentrates on estate planning. When his wife was diagnosed with MS, he recognized how different planning looks for people with chronic illness and it changed his whole approach to estate planning. Marty was so generous with his time, and this interview is so full of important, actionable content, that we decided to split it over two podcasts. And far from being a depressing topic, estate planning is more about planning for life rather than death. It's the process of providing peace of mind for you, and your loved ones (however you define the term).Full show notes and resources at https://fumsnow.com/fums101/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

It seems crazy to me but my ‘lil podcast is 100 episodes old today! So in a change from our regular schedule, I'll be taking a personal look back at the highs (which are many) and lows (not so much) of my podcasting journey since launching in 2015.I'll be talking a bit about why I started the podcast, my favorite episodes, as well as sharing some comments which have been sent in by some of you, the wonderful FUMS community.Here's to the next 100 episodes. And don't forget to speak to this stupid disease as it deserves and tell it FUMS, every single day.Love,Kathy xoxFull show notes and resources at https://fumsnow.com/fums100/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Even without a pandemic, a life with MS can be a lot to deal with. So, many of us will seek help for our mental health at some point. I know from personal experience how frustrating it is to have to explain exactly what MS is whenever I'm speaking to a new mental health therapist. Which is why I'm delighted that today's guest is working to educate therapists about psychological difficulties that are specific to a variety of chronic illnesses, including MS.Dr. Meghan Beier is a psychologist at Johns Hopkins University School of Medicine who specializes in MS. Her passion for improving care led her to create Find Empathy, which provides continuing education for mental health professionals on how best to serve patients who live with life-altering illnesses. Not only will Find Empathy provide learning for health professionals, but it will also help patients to find a provider with expertise in their particular condition. It's a win-win for everyone!Full show notes and resources at https://fumsnow.com/fums099/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Jenny Angus was very physically active, with a career in property management, when what she calls the Poltergeist took up residence in her life. Originally misdiagnosed in 2004, it took 10 years before she received her correct diagnosis of MS - during which time her disease had been left to run unchecked. Along the way, she had to stop her artistic career, which was so closely tied up with her identity. Jenny's story is a difficult one. She has investigated assisted dying, an arduous process that is legal in Canada. But with the help of her friends, family, and countless strangers, she is having HSCT (haematopoietic stem cell transplantation), an intense chemotherapy treatment for MS, in Mexico in January 2022.Recently she has been helping others through her patient advocacy work, and she is planning on blogging (and vlogging!) through her HSCT treatment.Full show notes and resources at https://fumsnow.com/fums098/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Adam Powell was a self-proclaimed beast until 2019 when he was diagnosed with the most aggressive case of Primary Progressive MS his doctor had ever seen. Over the course of 5 weeks, he lost the ability to walk and drive, which, combined with the onset of the COVID-19 pandemic, led to an intense grieving process.However, with his own unstoppable nature, combined with a healthy dose of FUMS attitude, he has found ways to cope. Through the use of physiotherapy, exercise, yoga, and light therapy, he even carried out a cross-country solo road trip! I think his story and his attitude to living his best life with Multiple Sclerosis are inspiring. Full show notes and resources at https://fumsnow.com/fums097/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

It is a truth universally acknowledged that women are up to three times more susceptible to developing MS than men. But men are more likely to have worse outcomes than women, as far as disability accumulation is concerned.We know it to be true - anecdotally, at least. But have you ever wondered why? Well, my guest certainly has.Dr. Rhonda Voskuhl is the Director of the UCLA MS Program, holds the Jack H. Skirball Chair in MS, and is a Professor in the UCLA Department of Neurology. She has received national and international awards for her research and sees MS patients in the neurology clinic, mentoring at the faculty, postdoctoral, graduate, and undergraduate levels.Full show notes and resources at https://fumsnow.com/fums096/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

It used to be the case that, if you were a person who had a chronic condition or a disability, you didn't have much of a voice. In fact, the idea that the patient was any kind of expert in their own health was just unthinkable! But with the rise of social media and patient advocacy, we are no longer satisfied with being the person to whom healthcare just happens.We all know that the struggle is real, and seemingly endless. But my guest today is someone who has dedicated her life to helping patients find their voice and become outspoken advocates for their health careAs the Co-founder and Executive Director of Patients Rising, Terry Wilcox has a track record of building coalitions with patients, caregivers, and medical professionals. She manages all of the day-to-day operations for the organization and is the visionary behind all of Patients Rising's programs, which include education, support, research, and the policy and advocacy work of Patients Rising Now.There's plenty in my wide-ranging chat with Terry to get you fired-up but there's also a TON of inspiration that you can carry forward into your life that can help you to advocate for yourself and your condition. As Terry says, it's all about building relationships!Topics covered in this episode include:How Terry was first inspired to work in patient advocacyThe current state of various healthcare bills, including the various bills under discussion in congressWhy most advocacy groups stay away from talking about pharma or medication pricesThe good news that Terry has seen, and what YOU can do to effect change!Why healthcare should be a non-partisan issue Information about the various programs available through Patient RisingFull show notes and resources at https://fumsnow.com/fums095/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

For most of us in the US, when we join the lucky MS'ers club, the first place we turn is likely to be the National Multiple Sclerosis Society. The National MS Society's vision is a world free of MS - something which we can all get behind! But while the bastard refuses to die, they also focus on ensuring that people affected by MS can live their best lives.One of the ways in which they do this is the MS Navigator program. The Navigators exist to connect you with the help you need, wherever and whenever you need it.To tell us more, my guest today is Allison Krehbiel, the Director of MS Navigator Services Delivery. Allison provides leadership to the nationwide team of MS Navigators who receive direct referrals from healthcare providers - utilizing the power of collaboration to improve client outcomes. Allison has been with the National MS Society since 2005 when she started as a contracted Case Manager. She received her Masters in Social Work from the University of Washington and has a certificate in non-profit management and in Diversity, Equity, and Inclusion.Topics covered in this episode include:The reasons why the program was startedDo the Navigators need to have a connection to MS? Examples of the different ways in which the program can help people with MS - including disability benefits and employment issuesThe training which is involved for NavigatorsHow to connect with the MS Navigator programFull show notes and resources at https://fumsnow.com/fums094/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

As the song says, it's the most wonderful time of the year! And many of us traditionally mark the season - and please know that the FUMS Podcast is a no-shame space - by giving up on eating and living in a healthier way. But increasingly, many of us living with MS and related chronic conditions are managing our health through nutrition and lifestyle. So how do we keep this up without missing our family traditions?Luckily, Functional Nutrition Counselor and Chef Alene Brennan is on-hand to show us the way.Alene knows first-hand what it's like to live, and rise above, a chronic illness and debilitating migraines. Following her diagnosis with Multiple Sclerosis in 2016, she now coaches individuals from around the world to manage autoimmune disease through diet and lifestyle.Listen in as she shows us that we don't have to compromise our healthy habits during the holidays to enjoy this special season.Topics covered in this episode include:Why Alene feels that it's important to focus on what's manageable for you to maintain a healthy lifestyle during the festive holidaysAlene's thoughts about the different diets which are believed to help with autoimmune conditions - including the Wahls protocol, and plant-based and gluten-free diets. How should we balance out conflicting advice?Why it's not enough to eat badly and exercise moreHow adopting a more mindful approach to your diet can help you to maintain your important family traditions and ritualsWhere to find out more about Alene and the work she doesResources for this episode (clickable links):Visit Patients Getting PaidIf you're getting value from FUMS, please consider leaving a review wherever you're listening nowHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchGet your copy of Kathy's ebook with Erin Glace: "Bowel and Bladder Issues in Multiple Sclerosis by Two Pee Brains With Potty Mouths Talking Shit About MS"Listen to Alene's previous appearances on the FUMS Podcast Show: Episode 061 – Essential Oils and MS with Alene Brennan and Episode 017 – Autoimmune Health Coach Alene BrennanFUMS episodes on Wahl'sTo learn more and receive free resources, visit Alene's website at www.lesspharmmoretable.com Follow her on Instagram @lesspharmmoretable and on YouTube** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

If you're anything like me, music is a big part of your life. It can lift me up, it can wipe me out, but it's always there. And you'll likely also have seen incredible videos which show people with Dementia or Alzheimer's responding to music when they otherwise are non-responsive.But did you ever think that music could make a difference to the health of people with MS? Dr. Cindybet Pérez is a board-certified clinical and neurological music therapist practicing in Puerto Rico. A faculty member at the Pontifical Catholic University, she also participated in a national-level project specially designed to promote health and wellness through evidence-based interventions for MS patients called MS in Harmony.In our fascinating conversation, Dr. Cindybet talks about how music therapy can help MS patients cope with their diagnosis, becoming another potential weapon in our arsenal - not simply lifting our mood but improving our movement and memory!Topics covered in this episode include:How Dr. Cindybet persevered to use her musical gift to help people, despite a lack of awareness of the benefits of Music Therapy in Puerto RicoWhy Music Therapy can be particularly effective for those newly diagnosed with MS, and how Dr. Cindybet adapts her work to the individual needs of each patientThe reasons why you should pay attention to song lyrics - evaluate the message as well as the rhythm and the feelThe power of playlistsDr. Cindybet's work on the national MS in Harmony projectResources for this episode (clickable links):Visit Patients Getting PaidIf you're getting value from FUMS, please consider leaving a review wherever you're listening nowHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchDownload Kathy's song, “Wash Your Mouth Out With Hope”Connect with the Puerto Rico Music Therapy Institute on FacebookLearn more about the MS in Harmony projectVisit the Certification Board for Music Therapists ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“Which part of our body are you ok with losing?” - this is the question that fitness trainer Kathy Chester will sometimes ask her clients.Prior to opening Disrupt Fitness Gym, Kathy had been a leader in the fitness industry for almost a decade. However, it wasn't until she was diagnosed with Multiple Sclerosis that she decided the time had come to take it to the next level. Having MS while being an instructor has allowed Kathy to not only push past places she'd been told she would never physically reach but has provided her with the gift of offering encouragement while working through different adversities with her clients.And why did she choose the name “Disrupt” for her gym? Well, that's because she's disrupting the idea of what we can and cannot do with MS and related autoimmune conditions. In other words, she says FUMS every day!Topics covered in this episode include:How Kathy relished speaking to groups in her former life as the wife of a pastor - and why she used humor to cover her initial MS symptomsHow a huge relapse coincided with the end of her first marriage and the ways in which Kathy handled dating with MSWhy she decided to change her fitness practice to focus on helping people with autoimmune conditions - and the reason Kathy decided to stop training in other venues and begin working with clients in her garageWhy Kathy's fitness practice is as much about emotions as it is about movementThe difficulties of running a business (and getting paid) within the autoimmune communityWhy Kathy decided to launch her own podcast and where you can find out more about her and her workResources for this episode (clickable links):Visit Patients Getting PaidVisit Disrupt Fitness Follow Disrupt Fitness on Facebook and InstagramListen to the Move It Or Lose It podcastListen to Kathy Reagan Young on the Move It Or Lose It podcast - Part One and Part TwoIf you're getting value from FUMS, please consider leaving a review wherever you're listening nowHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS Merch** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

It's a third-time visit for MS-specialist Physical Therapist Dr. Gretchen Hawley. She began treating people with Multiple Sclerosis during her first year of professional practice. The positive results she saw in her patients led her to specialize in the treatment of MS, taking every opportunity to attend workshops and conferences dedicated to improving lives through Physical Therapy.She has previously appeared to talk about the benefits of PT for People with MS, and the launch of her online MSing Link wellness program - which coincided with the global COVID-19 shutdown. I've been hearing her name mentioned in lots of MS-related areas recently, so she's back to talk about all the exciting things she's working on now - including the launch of her own podcast, and a FREE 5 Day MS Strength Challenge!How Dr. Gretchen's online MSing Link Wellness program has helped people all over the world - and the importance of accountability as an aid to achieving health goalsWhy heat intolerance affects so many people with MS - along with tips and tricks to help us to deal with itWhat is Neuroplasticity? And why is it relevant for people with MS?The counter-intuitive benefits of light to moderate exerciseWhy Dr. Hawley decided to start a podcastDetails about how you can sign up for Dr. Hawley's Free 5 Day MS Strength ChallengeResources for this episode (clickable links): Visit Patients Getting PaidDr. Hawley's two previous appearance on the FUMS Podcast: FUMS 022 – Benefits of Physical Therapy for MS with Dr. Gretchen Hawley and FUMS 074 – Dr. Gretchen Hawley Providing the MSing Link for MS with PTPrevious FUMS podcast episode about the ThermApparel Undercool Cooling Vest: FUMS 059 - A Solution for Heat Sensitivity in MS Dr. Hawley's MSinglink websiteListen to The MSing Link podcast Learn about the Free 5 Day MS Strength Challenge Visit Gretchen on YouTube, Instagram and FacebookIf you're getting value from FUMS, please consider leaving a review wherever you're listening nowHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS Merch** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Well, COVID-19 doesn't seem to be going away anytime soon, does it? You had questions about the COVID-19 vaccines and booster shot and Dr. Beaber had answers.Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He posts new videos about MS on YouTube every Wednesday AND he has written a book that features amazing stories and practical advice to enable people to develop resilience as they live with MS.In my conversation with Dr. Beaber, we also talk about diet, exercise, and the potential benefits of dirt!Topics covered in this episode include:COVID-19 and MS - Are people with MS more at risk or are we better protected than the 'normals'? How do the various vaccines interact with MS DMTs?What Dr. Beaber thinks MSers should do about receiving COVID booster shots Dr. Beaber's thoughts about the numerous diets which are supposed to help MSers - and his cautious recommendationsWhy exposing yourself to a little bit of dirt might be good for what ails ya!The counterintuitive benefits of exercise in combating MS fatigueDr. Beaber's book, "Resilience in the Face of Multiple Sclerosis" - and how you can get a free downloadFull shownotes and resources at https://fumsnow.com/fums089See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

I, like many of us, have been watching with interest the current research into the potential benefits of psychedelics in the treatment of depression - because, obviously, depression is pretty common when you're dealing with a life-changing MS diagnosis!Maybe like me, you asked yourself, "Hmmm. I wonder if anyone has been looking into its potential usage for chronic illnesses like MS?"Well, guess what?!Neurobiologist Caitlin Thompson is an independent scientific researcher studying the potential of psychedelic compounds as a novel approach to the treatment of autoimmune conditions. During her healing process from Lyme disease, chronic fatigue, PTSD, pain, and a plethora of other autoimmune symptoms, Caitlin became fascinated with the potential of using psychedelic substances to treat and relieve autoimmune and chronic health conditions. She is also an active practitioner and educator of Kambo, a traditional Amazonian medicine.Please noteIt should be noted that much of the research so far is anecdotal at best, and there remain a number of questions that need to be answered about efficacy, safety, and the long-term effects. However, this is potentially a really interesting area for further study. Full show notes at https://fumsnow.com/fums088See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

There are countless ways that MS can MesS with your life. But one of the most infuriating, most common, and most difficult to talk about, is sexual dysfunction. Obviously, this is something that can affect anyone. But a shocking 80% of people with MS report having sexual concerns or issues. The symptoms can include loss of sensation to an inability to climax, and the causes can run the whole gamut from depression, poor body image, and medications to treat your MS and associated conditions.So Dr. Fred Foley is here to help you bring your sexy back!Dr. Foley is Professor of Psychology at Yeshiva University, in the Bronx, NY, and the Director of Neuropsychology and Psychosocial Research at the Multiple Sclerosis Center at Holy Name Medical Center in Teaneck, NJ. The most important thing to learn from this podcast is that there are lots of ways you can still get busy and get happy! But the key is communication - with your partner, your doctor, and healthcare professionals. So Dr. Fred also offers guidance on how to do that.Full show notes and resources at https://fumsnow.com/fums087See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

If you've been following us for any amount of time, you'll know that we always give a big FU to MS (the clue's in the name!) And even though we'll have our ups and downs, we try to inject a little humor along the way.Now, we know that MS is NO JOKE. But if you allow yourself to see the funny side of it occasionally, it can help with getting through the day-to-day.My guest this week is Shari Short, a comedian, writer and, naturally, a developmental psychologist working in healthcare communications. Since her MS diagnosis in 2008, Shari has used humor to deal with MS, communicate about MS and cope with MS - and she thinks that you might benefit from doing the same. Topics covered in this episode include:The story of Shari's MS diagnosis and and her experiences of injecting her first MS DMTHow she got into comedy and where it fits into her lifeWhy Shari thinks that humor was helpful in her diagnosis and continues to be in her life with MSHer first experiences doing standup and how she manages her symptoms when performingThe “Crazy Cane Lady Letter Series” and other satirical writingShari's opinions about how MS is portrayed in the mediaFull show notes and resources at fumsnow.com/fums086.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Amber Tuma was studying for her music degree in Texas and raising two kids with her husband when MS reared its ugly head. So she says FU to MS by continuing to write and play music with her band The Gallows Crow.Hear the inspirational story of how Amber refuses to let MS get in the way of how she lives her life. Go, Amber!Topics covered in this episode include:Amber's life pre- her MS diagnosisThe story of her initial symptoms, her quick diagnosis, and an unknown link to MS How Amber handles the emotional and physical stresses of playing music, including the story of the gig she played shortly after her diagnosisHow Amber's friends and family members have responded to her diagnosisAmber's aspirations, and plans to write a song about MSResources for this episode (clickable links):Visit The Gallows Crow and follow them on Instagram and FacebookListen to Kathy's song, Wash Your Mouth Out With HopeHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchSign up for the Patients Getting Paid course email waiting listGet the “Bowel and Bladder Issues in Multiple Sclerosis by Two Pee Brains With Potty Mouths Talking Shit About MS” ebook** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

When Cheryl Hile's neurologist told her to “lower her expectations”, the marathon runner showed that she was an FUMS'er to her core. Adopting the mantra “I do what I can and never give up”, she has now completed 56 (FIFTY-SIX!!!) marathons, 41 following her diagnosis.After running 7 marathons on 7 continents in 12 months, Cheryl founded the running and walking team Run A Myelin My Shoes to challenge the perception that strenuous exercise is bad for MS.Listen in as I chat with this amazing MS Warrior and even get strong-armed into taking part in the 2021 event!Topics covered in this episode include:Cheryl's pre-MS life including running marathons on vacation with her husbandHer first MS symptoms and THAT neurologist conversationHow she founded Run A Myelin My Shoes after meeting MSers who ran or wanted to runWhy you don't have to run to get involved with Run A Myelin My Shoes!Details of how you can get involved with the 2021 event, regardless of where you liveResources for this episode (clickable links):Visit CherylHile.comVisit the website for Run A Myelin My Shoes and get details about the 2021 RAMMS eventWatch the Run A Myelin My Shoes mini-documentaryHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchSign up for the Patients Getting Paid course email waiting list** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

I'm sure that all of us can agree that MS sucks for a lot of the time. But having an FUMS attitude means not just surviving with MS - but THRIVING!Jen DeTracey is a certified coach and the founder of Women Thriving with MS. In 2010, Jen was a successful consultant and professional speaker when, during a speaking tour, she found she could barely walk, write or smile. 48 hours later she was diagnosed with Multiple Sclerosis. At that time, she thought she would never be able to work again.Jen has been living with MS for over 10 years and has now discovered how to thrive. And now she's guiding women on how to empower themselves to live life better with MS. Listen in to find out how!Topics covered in this episode include:What Jen was doing prior to her diagnosis with MS - in her career and private lifeThe story of Jen's early symptoms and MS diagnosisHer post-diagnosis struggles with mental healthHow an insurance policy empowered Jen to make a change in her careerWhy Jen started her Women Thriving with MS programDetails about Jen's recently launched weTHRIVE membershipResources for this episode (clickable links):Check out Jen's weTHRIVE membership programmeVisit the WomenThrivingWithMS.com website and listen to the PodcastFollow Women Thriving With MS on YouTube, Twitter and FacebookHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchSign up for the Patients Getting Paid course email waiting list** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.comPrivacy Policy and California Privacy Notice.

I hear from a lot of people with MS who have had success in treating their condition with Naturopathy and adopting an anti-inflammatory diet. So who better to talk to about this than a renowned Naturopath who also has MS?Since being diagnosed with multiple sclerosis at age 30, Elizabeth Yarnell has spent the past 20 years studying how to manage autoimmunity naturally as a traditional naturopath. Her focus is on how anti-inflammatory therapies can influence the course of MS.Through her work with hundreds of people with MS and other autoimmune conditions, Elizabeth's personalized natural therapies have helped them slow or even reverse the course of their disease. Topics covered in this episode include:Elizabeth's diagnosis story - and why she chose to explore natural therapiesWhat exactly is a naturopath? The tests which Elizabeth uses to find each patient's personal inflammatory triggers - and those tests which you should avoidThe links between inflammation and digestive issuesElizabeth's three-pronged approach to treating her patients and the results which people can expect to experienceWhat makes certain foods anti-inflammatory?Schedule a complimentary naturopathic assessment with Elizabeth at bit.ly/eyassessmentResources for this episode (clickable links):Visit ElizabethYarnell.com Connect with Elizabeth on Twitter, Instagram and FacebookSee Elizabeth's books, including Glorious One-Pot MealsHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchSign up for the Patients Getting Paid course email waiting list** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

As part of the rich buffet of joy that MS lays out for us, problems with your gut and pooping have to be right at the top of the charts - or the shit-list, if you will.Just to state it for the record, not everyone with MS will have these issues - as we know, MS isn’t a one-size-fits-all deal. But it is something that a lot of people deal with, which is why we’re covering it here.So my guest today is Dr. David Levinthal, the Director of the Neurogastroenterology and Motility Center at the University of Pittsburgh Medical Centre. Dr. Levinthal got his doctorate in Neuroscience and has a particular interest in functional and motility disorders of the GI tract, and GI symptoms that arise in the context of neurological disorders, including MS.So as far as gut issues and MS are concerned, it’s safe to say that he knows his shit! Topics covered in this episode include:What are the GI issues which commonly affect people with MS? How neural circuitry interacts with the gutWhy are these issues overrepresented in people with MS?Current experiments with brain stimulationNew developments, treatment options, and Dr. Levinthal’s current focusWhat on earth is the Bristol Stool Chart?!Resources for this episode (clickable links):Get your copy of Kathy’s ebook with Erin Glace: "Bowel and Bladder Issues in Multiple Sclerosis by Two Pee Brains With Potty Mouths Talking Shit About MS"Connect with Dr. Levinthal on Twitter and view his Clinical Provider PageVisit the American Neurogastro­enterology and Motility Society websiteWeb MD page about The Bristol Stool ChartHelp keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

In my life, I spend a lot of time in various MS-related spaces. Having a community that understands what I’m going through, and where I can offer support, is one of the blessings in my life.But even with all of that, there are still things about these spaces which concern me. So in this solo episode, I’m getting a few things off my chest! And in all of this, I’m not trying to cause offense. I’m just saying that you should value your own health, so be careful where you get your medical advice! As always, I’d love to know your thoughts on this subject.Topics covered in this episode include:My MS bona-fides! AKA I know what I’m talking aboutThe problem I have with how some people are using online MS-related groups The real value of these groups, what they’re good for… and what they’re NOTMy current issues with the US healthcare systemDon’t be intimidated by your medical team - hold their feet to the fire! Resources for this episode (clickable links):Visit Healthline’s Living with MS Facebook pageGet Healthline’s free MS Buddy app for iOS and AndroidHelp keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack.~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEdit

Matt LaFrance is a 37-year-old husband and father of three young boys from San Jose, CA. He was diagnosed with MS in 2009 at the age of 25. In May he will be running 162 miles in six days as part of the 2021 MS Run the US relay team. I’ll let that sink in. 162 miles in six days. AND he has MS! MS Run the US is the longest annual relay run across America. It’s an epic 3,260-mile run to stop MS! The relay begins in April in Santa Monica, CA and finishes in August in New York. The relay team is made up of 19 runners hand-selected from a pool of applicants nationwide.  Matt is running the MS Run The US relay to inspire those who have been recently diagnosed and support those living with MS who have not been as fortunate as him. If you're able, please consider donating to this worthy cause and supporting Matt. Topics covered in this episode include: Matt’s diagnosis story and his life since then Why he decided to combat his illness with exercise, diet, and supplements, rather than DMTs  Why Matt views his MS diagnosis as a blessing in disguise How Matt got involved with MS Run The US How you can support him in his epic run  Resources for this episode (clickable links): MS Run The US website  Matt’s fundraising profile on the MS Run The US website MS Hope website Follow Matt on Instagram, Facebook, and LinkedIn  Help keep FUMS alive at the FUMS Podcast Patreon page  Sign up for the Patients Getting Paid course email waiting list ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

The benefits of a healthy diet and lifestyle for people living with MS have been of increasing interest over the last few years. But have you ever stopped to think about the effect of the cosmetics you put on your face? Following her diagnosis with Multiple Sclerosis, Natalie Schultz White was determined to put a positive spin on her experiences, through her website, MS Saved My Life. At the same time, she came to the conclusion that toxins in her life and the food she was eating were contributing to her illness, and began treating her MS with a real whole-food lifestyle, bypassing all traditional MS medication. After three days, she began feeling better, her symptoms began to dissipate and her energy began to return. Listen in to hear her inspiring #chronicpreneur story!  Topics covered in this episode include: Natalie’s MS diagnosis story How she chose to explore the benefits of a healthy diet with the support of her family What is clean eating? Why Natalie used the same principles to build her skin care business - “If you wouldn’t put it in your mouth, you shouldn’t put it on your skin” Get 10% off your first order at the be well company - with code FUMS10 Resources for this episode (clickable links): FUMS Podcast Episode 010: Dr. Terry Wahls On Her Diet vs. Dr. Roy Swank's Diet for MS Natalie’s website, MS Saved My Life Website for the be well company - get 10% off your first order with code FUMS10 Follow the be well company on Instagram, Facebook, Twitter and Pinterest  Help keep FUMS alive at the FUMS Podcast Patreon page  Sign up for the Patients Getting Paid course email waiting list ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Tamara Sellman was last on the FUMS podcast back on Episode 31 - when she was talking about sleep disorders and her professional life as a medical board-certified sleep technologist and sleep educator. It was during her training that she was diagnosed with Multiple Sclerosis. A widely published writer in the years following her diagnosis in 2013, Tamara wrote the collection of prose and poetry which makes up her "hybrid memoir", Intention Tremor, which was published in early 2021. We talk about why she writes, why she writes about MS in particular, and the difficulties of launching her first book during a global pandemic. Topics covered in this episode include: A brief recap of Tamara's diagnosis story Why she chooses to write about MS Tamara's unusual book tour! A reading of "The Expert" from Intention Tremor Details of a special gift you can receive if you mention the FUMS podcast when buying your copy of Intention Tremor Resources for this episode (clickable links): FUMS Podcast Episode 031: Multiple Sclerosis and the Science of Sleep with Tamara Sellman FUMS Podcast Episode 055: Coronavirus and Chronic Illness: A Message for the Healthies Tamara Sellman website Mention the FUMS podcast when you order Intention Tremor from Tamara's website to get a free USB flash drive The Accelerated Cure Project Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

The popularity of personal DNA testing and genome sequencing has really increased in recent years. As someone with MS, have you ever thought about getting it done yourself? Patrick Short is the co-founder and CEO of Sano Genetics, a platform that helps patients match with precision medicine research and learn more through personalised reports, and other content including patient stories. The platform is patient-centric and private-by design, and through data-driven matchmaking and home genomic testing, has enabled precision medicine studies in common and rare diseases, including autoimmune and neurology (MS in particular) as an area of focus. Sano Genetics empowers people to access research, information, and their DNA through their platform. It works as a guide for people who want to take part in research and inform them of different types of research. Participants can also gain access to their DNA through some of Sano's research projects. Exclusive FUMS giveaway! You can enter a giveaway for a free Sano Genetics DNA kit through this link. You must create and validate an account in order to enter and a winner will be picked after the giveaway closes (two weeks after the episode is published on Tuesday March 9th, 2021). Topics covered in this episode include: The different types of research which Sano Genetics carries out Is MS genetic? What is precision or personalised medicine? The Sano Genetics process - and Kathy's own experience How can research benefit the MS community? Resources for this episode (clickable links): Visit the Sano Genetics website and the page for Multiple Sclerosis Listen to The Genetics Podcast Connect with Sano Genetics on LinkedIn, Instagram, Twitter and Facebook Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

My guest today is Mindy Eisenberg. Mindy is the Founder and Director of Yoga Moves MS, a nonprofit company with the mission of improving the quality of life for individuals with MS, Parkinson's Disease, and neuromuscular conditions. She is the author of Adaptive Yoga Moves Any Body and the creator of Adaptive Yoga Cards, which show daily yoga moves for all ages and abilities. Mindy has provided yoga therapy to individuals with mobility challenges for over fifteen years and thrives on building a strong, mighty community for her students and families. She is also a Qualified Mindfulness-Based Stress reduction teacher. Mindy previously appeared on the podcast in 2018 - see FUMS 019 - and is back to talk about how her practice has developed and continues to grow! Topics covered include: The story of how a family link inspired Mindy to develop her yoga practice in order to increase the quality of life for people with Multiple Sclerosis and other neuromuscular conditions How Mindy strives to make yoga accessible for all in her classes Why Mindy adapted her Yoga book into instructional cards The importance of the support group for people who are following Mindy's Yoga classes and how this grew into the Holistic Health and Wellness Forum How she was able to provide instruction and pivot to running the forum and yoga classes virtually during the pandemic - with a global audience! How the work that Mindy does positively impacts the MS community - and how the view of exercise as part MS of disease management has changed over the years The importance of mindfulness in managing your MS Resources for this episode (clickable links): A performance of "Wash Your Mouth Out With Hope", the theme to the FUMS podcast show Mindy's previous appearance on the FUMS Podcast Show: FUMS 019 – Adaptive Yoga, Mindfulness, and Meditation with Mindy Eisenberg Visit the Yoga Moves MS website and Yoga Moves MS instructional products Visit Yoga Moves MS on YouTube, Instagram and Facebook Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for The FUMS 6-Pack here: The FUMS 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Dr. Gretchen Hawley is an MS-specialist Physical Therapist. She began treating people with Multiple Sclerosis during her first year of professional practice. The positive results she saw in her patients propelled her to immerse herself even deeper into the treatment of MS, taking every opportunity to attend workshops and conferences dedicated to improving lives through PT. Gretchen previously appeared on the podcast in 2018 - see FUMS 022 - and is back to share exciting news about her new online MS wellness program, The MSing Link, something she talked about way back in 2018! Topics covered include: A recap of Dr. Hawley's journey to become an MS Specialist Physical Therapist Emerging discoveries in the field of Physical Therapy What is Neuroplasticity? Why Dr. Gretchen thinks that every MSer should have at least one session of Physical Therapy The importance of stretching, exercise and mindfulness practice for all people with MS Details of Dr. Hawley's new MSing Link Online MS Wellness Program Resources for this episode (clickable links): Gretchen's previous appearance on the FUMS Podcast Show: FUMS 022 – Benefits of Physical Therapy for MS with Dr. Gretchen Hawley Hawley's MSinglink website Visit Gretchen on YouTube, Instagram and Facebook Dave Bexfield's Active MSers website Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

David Lyons was a healthy athlete, gym owner and TV & film producer when he was diagnosed with Multiple Sclerosis in 2006. After immediately being told that he would be wheelchair bound, David, along with his wife Kendra, decided to battle MS in the gym! David founded the MS Fitness Challenge (MSFC) charity to help educate and train both MSers and fitness professionals on the importance of fitness in the fight against MS. In 2009, at age 50, David competed in his first bodybuilding contest with MS, winning a Most Inspirational trophy. He went on to be presented with the Milestone Award by the National MS Society for his accomplishments. Listen in for David's inspiring story, as well as details of his new OptimalBody membership program for MS exercise and fitness. Topics covered include: David's background in fitness and his diagnosis story Why, after succumbing to depression, he decided to get back into the gym David's first bodybuilding competition - with MS - at age 50! The realization that bodybuilding and available exercise programs weren't helping him to beat his disease, and his decision to create his own training methods The motivational benefits of group membership and accountability for David's fitness programs Details of David's OptimalBody membership program for MS exercise and fitness - and the response to the program so far PLUS information about a lifetime discount for members of the FUMS Nation when they sign up for the OptimalBody membership program using the discount code FUMS5 Resources for this episode (clickable links): Information about the OptimalBody membership program for MS exercise and fitness - use the discount code FUMS5 for a lifetime discount DavidLyonsFitness.com - online personal trainer The MS Fitness Challenge website, Facebook group and Facebook page MS Fitness Challenge on Twitter Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

It's a New Year! And although the COVID-19 crisis is still ongoing, there is light at the end of the tunnel with vaccines beginning to be rolled out. But even though this is really positive, there is a lot of misinformation out there about the COVID vaccines in general and how they interact with chronic health conditions like Multiple Sclerosis. If we need someone to cut through all the BS and talk about this, who else are we going to turn to other than Dr. Aaron Boster MD? He's been featured on the podcast twice before (FUMS 049 and 052) so he's the perfect person to bring on to sort through the noise and speak directly to how this affects us! He also spends time answering questions from FUMSers and tearing down a few Anti-Vaccine myths. This conversation was originally published as a Facebook Live even - see the original video on the FUMS YouTube channel. Topics covered include: The background to the spread of COVID-19, how this disease relates to people with MS and the impact of comorbidities The development of two available Messenger RNA (mRNA) vaccines - the Pfizer-BioNTech COVID-19 vaccine and the COVID-19 Vaccine Moderna How these two vaccines work and the latest thinking about how they can interact with certain MS Disease Modifying Therapies (DMTs) Your questions answered What to be aware of if you're doing your own research online Resources for this episode (clickable links): Watch the original video of this conversation on the FUMS YouTube channel Aaron Boster YouTube channel Aaron Boster Facebook page Aaron Boster on Twitter Page for The Boster Center for Multiple Sclerosis Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Prepare to have your mind BLOWN! MXTreality is an XR company based out of Seattle, WA. XR is an umbrella term for various technologies and incorporates Virtual Reality, Augmented Reality and Mixed Reality. The company has made over 100 experiences to meet client needs, further accessibility, as well as interactions that are just fun. MXTreality is working with Swedish Hospital in Seattle, and local MS patients, to design MS CART (working title), a Virtual Reality experience that incorporates Creative, Artistic, Relaxation, and Therapeutic elements. Even more interestingly, these elements are being designed in collaboration with the MS community. I think you'll agree that the possibilities of treatments for people living with Multiple Sclerosis are super exciting! Enjoy this conversation with Rodger Caudill, the Head of Communications at MXTreality. Topics covered include: How MS CART came to be How the team at MXTreailty came to link up with Swedish Hospital in Seattle What the potential benefits are and where this technology can go How people with MS can be involved with MS Cart Resources for this episode (clickable links): MXTreality website MXTreality on YouTube, Twitter, Facebook and LinkedIn Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Neuropsychologist Dr. Victoria Leavitt was previously a guest way back on Episode 13 of the FUMS Podcast Show. She's back with us today to talk about her new role as cofounder of eSupport Health, a telehealth company which provides easily accessible online support groups for people with MS. The eSupport Health model is based on Dr. Leavitt's research into the benefits of social support groups for people with MS. And I think that - in 2020 and the time of COVID - we can all agree that social interaction is more important than ever.   Topics covered include: How the eSupport Health model grew out of the laboratory The recognized positive effect of social support on brain health The moment when Dr. Leavitt recognized the value of a support network who understand the ins and outs of your health condition - and how she was able to quantify the positive impacts of participation in online groups How the initial research grew into eSupport the company eSupport's various subscription plans, which all include a free first month   Resources for this episode (clickable links): eSupport Health website Leavitt's previous podcast appearance, FUMS 013 – Cog Fog in MS FUMS Podcast Episode 065 "But You Look So Good" Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com

Following her diagnosis with MS at just 22 years-old, Jessie Ace has been on a mission to fill the internet with positivity after her doctor told her to 'go home and google' her condition, leading her to find every scary story going. As a podcast host, writer, public speaker and illustrator, she provides help and advice for people living with all chronic health conditions. Jessie is the author of the ENabled Warrior Symptom Tracker book which helps you manage multiple conditions, medications, spot symptom patterns, prioritize your energy, achieve your goals, and accurately keep symptom records for your doctor. Listen in to find out more about her story and the Enabled Warrior Symptom Tracker.   Topics covered include: Jessie's account of her misdiagnosis / diagnosis - and her funny-slash-awkward lumbar puncture story! Her initial experiences with online forums for chronic illnesses How she was prompted to begin her advocacy work after being unable to find her experiences reflected online The birth of the ENabled Warrior Symptom Tracker book from her experiences at Neurology appointments How to get your copy of the ENabled Warrior Symptom Tracker [affiliate link] Resources for this episode (clickable links): Jessie's writing on Multiple Sclerosis News Today Her diagnosis story, featured on the MS Trust website Listen to the DISabled to ENabled podcast Buy your copy of the ENabled Warrior Symptom Tracker [affiliate link] View Jessie's artistic portfolio The DISabled to Enabled Facebook page and Instagram profile Enabled Warriors Facebook group Help keep FUMS alive at the FUMS Podcast Patreon page Sign up for the Patients Getting Paid course email waiting list ** Sign up for the FUMS Friday Night 6 Pack here: Friday Night 6-Pack. ~ Special thanks to my podcast editor Steve Woodward. Do you have a podcast or are you interested in starting a pod? **GREAT way for a Patient to get PAID!! I HIGHLY recommend adding Steve to your team. Find him at PodcastingEditor.com