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 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

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 

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

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

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