FUMS: Giving Multiple Sclerosis The Finger

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 no...

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 y...

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 caregive...

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 w...

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 Emi...

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 be...

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 ...

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 Petr...

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 Wel...

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 podc...

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 f...

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...

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 Consult...

"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...

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 hist...

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 usin...

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/fums101

When I announced that I'd be talking to Marty...

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...

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 t...