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/

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/

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/

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/

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/

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/

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/

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/

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/

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/

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/

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/

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/

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/

"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/

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/

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/

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/

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/

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/