FUMS 037 – MS Stories From Around the World #2: Robert Joyce (Ireland)

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 year
• How 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 exercising
• Tips on how to enjoy holiday food without regret - and making yourself feel worse
• Our favorite holiday food memories and recipes

Full 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 21
• How, after feeling like MS had crippled her life as an artist, Brooke was able to use comic art to build her career
• The 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 Sclerosis
• What Cognitive Behavioral Therapy (or CBT) is and why it is so effective for people with MS
• How CBT compares with medication as a way to deal with MS-related mood disorders
• Ways that cognitive decline can be monitored, and the three types of exercise that you should be doing to stimulate your brain!
• Dr. Feinstein answers questions from the FUMS community

Full show notes and resources at https://fumsnow.com/fums117/

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 life
• Her 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 family
• The power that comes from sharing experiences with transparency

Full 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 diagnosis
• How the diagnostic procedure looked in the time before MRIs
• Sue's limited experience of DMTs 
• The progression of Sue's MS, and how she chooses to look for the positives in her life

Full show notes and resources at https://fumsnow.com/fums115/ 

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 canvases
• The 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 murals
• The symptoms that Lydia and Kathy share, and why Lydia thinks the US Healthcare system is trying to wipe out or "cleanse" the chronically ill
• The plans that Lydia has in place for her death with dignity, aka suicide
• Information about the full-length feature documentary about Lydia, The Art of Rebellion

Full 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 study
• What 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 element
• Where to go to find out if you qualify to participate in the study

Full 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 conditions
• How 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 Colorado
• Kathy's own experiences with Pilates
• How to find out more about Mariska and her work

Full 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 1980s
• How peer counseling became Debbie's support network AND her job
• Why Debbie concentrates on lifestyle and wellness to manage her MS
• The 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!

DISCLAIMER

The information contained in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment.

Topics covered in this episode include:

• Defining Intermittent Fasting 
• Cynthia and Kathy's own experiences of IF - and the positive outcomes they have noticed
• What 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 fast
• Tips and resources for anyone wanting to try IF

Full show notes and resources at https://fumsnow.com/fums110/