With summer, vacation months upon us, at least here in the U.S., for those of us living with mobility issues, it adds on an extra layer of complexity and consideration into planning a trip.

Today's guest is going to tell you how you can conquer all of your fears with ease...on a scooter. That's right. It's the mobility device you didn't know you needed. Maybe the mere thought of using one makes you want to stop listening. Maybe you think you're not ready or bad enough yet to use a scooter.

Well, you can keep wasting your time and your physical energy trying to get all of your daily tasks completed. You can struggle through trying to keep up with the crowd. You can continue to rely on others to get you where you need or want to go. Or, you can listen to today's guest debunk all of your misgivings and tell you how it's done.

Join me in welcoming Jodi Johnson, one of our fellow MS Gymmers, to the podcast. 

EPISODE NOTES:

- Rapid decline

- Most symptoms -related

- Persistent foot drop

- Tripping

- Enter mobility aids

- From strolling to rolling

- Starting with canes

- The joy and frustration that came with deciding to use a mobility aid

- Embarrassment

- Traveling with aids

- Discovering a workaround for walking longer distances

- Renting a wheelchair even though she wasn't "ready"

- Feeling small

- Being an ambulatory wheelchair user

- Trying out a walker/wheelchair combo…even in Portugal and Costa Rica

- Getting unapologetically used to using a mobility aid

- Mobility aids in the home

- Getting her first scooter

- Pride Gogo Scooter

- Shocked at the freedom and portability of a scooter

- Going to the mall again!

- Getting her independence back

- Using multiple mobility aids depending on how she was feeling on any given day

- Canes/walker/wheelchair/scooter

- Acquiring her bumblebee scooter

- Flying with a foldable scooter

- The Transformer by Solax

- Getting a lift for her car - Bruno Scooter Lifts for vehicles

- Opening up doors for travel

- Been on over 40+ flights

- Being aware of potential airline damage

LINKS:

Jodi Johnson on Instagram

Pride Gogo Scooter

Solax Transformer Automatic Folding Scooter

Bruno Scooter Lifts for vehicles

THE MS GYM:

Website

YouTube

Facebook

Instagram

BROOKE SLICK:

Website

Instagram

In today's MS Gym podcast episode, we'll chat with MS Gym member Kim as she shares about her:

• Symptoms and rare diagnosis

MS Gym Links: The MS Gym

Join host Jodes Feltham, on Instagram, TikTok, or Facebook Reels to learn more about disability awareness and inclusion.

Welcome back to our 3rd and initially unplanned episode with Dr. Richard Burt, author of the recently released book, Everyday Miracles and the OG provider of HSCT here in the US.

Let me explain why we thought it would be useful for our listeners, as well as Dr. Burt to come back and re-hash some of Dr. Burt's touch points from the first two episodes. In particular his stance on NOT treating PPMS and non-active SPMS with HSCT.

You see, after the first two episodes, I witnessed rumblings of concern and discontent within the online HSCT community. I belong to multiple HSCT groups and most had at least one or two conversations going on addressing Dr. Burt's most recent interviews, including ours on this podcast.

So, who was most concerned? Well, primarily PPMS patients, and non-active SPMS patients who are either considering HSCT, are already booked to have HSCT or those who've recently had HSCT. I 100% understand how Dr. Burt's stance on the efficacy of HSCT on their types of MS would have been reason for pause. Knowing that, I felt a responsibility to revisit the topic with him and drill down on the details.

It would also give us a chance to ask him a couple of questions we missed on the first interview, like dietary restrictions before and after HSCT as well as questions on second transplants.

We feel so fortunate that Dr. Burt graciously agreed to come on again and address a lot of these pressing issues.

Also, if you hold on until the end, Jodi and I have a short chat about what we took away from today's interview and recap our thoughts on our entire experience with Dr. Burt.

Because she and I have had HSCT, and each in different facilities, Russia and Mexico, we have a unique perspective and are able to relate to the concerns of an HSCT patient no matter what stage they're at in their HSCT journey.

EPISODE NOTES:

- 2nd transplants 

- Were you misdiagnosed?

- Do you even have MS?

- Many diseases mimic MS

- The average percentage of patients who relapse post HSCT

- Explaining in detail his thoughts on treating PPMS and non-active SPMS patients

- What is RPMS (relapsing progressive MS) and would he offer HSCT to RPMS patients?

- The type of regimen he would recommend If progressive MS is treated with HSCT

- If not HSCT, what types of treatments does he recommend for PPMS and non-active SPMS patients?

- Does he have any dietary recommendations for HSCT patients either before or after HSCT?

- His thoughts on carbohydrates

- The Epstein Barr virus (EBV) connection to MS

- Following EBV titers after transplant

LINKS:

Episode #1 on YouTube: https://youtu.be/ezjhqHtYA8Y

This episode, #2 of 2, on YouTube:  https://youtu.be/40dqLdIeZlc

Dr. Burt's book, EVERYDAY MIRACLES: https://www.amazon.com/Everyday-Miracles-Scleroderma-Autoimmune-Hematopoietic/dp/1637631251

Dr. Burt's website:  https://astemcelljourney.com/about/drrichardburt/

Email to apply for HSCT with Dr. Burt: [email protected]

THE MS GYM:

Website

YouTube

Facebook

Instagram

BROOKE SLICK:

Website

Instagram

JODI FELTHAM:

TikTok

Instagram

Today, we'll chat with one of our Original Gymmers, Jan J, and learn about her:

• Misdiagnosis and surgical treatment

The MS Gym Links:

The MS Gym

Join me today to uncover what purposes and desires reside in your heart that you want to share with the world.

Are you passionate about a specific hobby, diet, activity or cause?

Today, I'll talk about my own desire to become an advocate for disability and also my favorite clothing line lululemon.

It's my desire that disability be part of the "diversity" movement in word and in action.

Links

The MS Gym

Join me on my advocacy journey:

Jodesfeltham on Tiktok

Jodesfeltham on Instagram

Welcome to part two of two of our interview with Dr. Richard Burt. I can't tell you how many people have reached out to me after listening to part one and how anxious they are to see what awaits in part two. I even had one listener message me to say the interview with Dr, Burt should be required watching for everyone with MS, and I'm not going to disagree with that deduction.

If you have PPMS, whether you're considering HSCT or not, you should definitely listen to this episode. Dr. Burt completely reframes the type of disease PPMS is or isn't. If you want to hear about the future of organ and tissue repair including but not exclusive to remyelination, you should listen to this episode. Those topics are just scratching the surface of what this medical innovator brings to the table for the future of the treatment of chronic illnesses, debilitating injuries, and to the exciting new world of neuroregeneration. I feel certain that what he's working on today is laying the groundwork for treatments that will be considered commonplace over the next 30 years.

Before we jump into this next episode, I wanted to let you know that this episode will be available to view on the MS Gym’s YouTube page, and there will be links in the episode notes to that YouTube page. There will also be links to part one of this interview as well as links to Dr. Burt’s book, and his website, as well as an email, where you can contact Dr. Burt’s team if you're considering HSCT.

EPISODE NOTES:

- His thoughts on PPMS and why he doesn't treat it

- How disease labels can evolve over time

- How HSCT drug protocols vary per autoimmune  disease

- What can trigger a relapse post HSCT

- IPS stem cells and neuroregeneration

- Starting a new biotech company

- The future of HSCT in Chicago

- How IPS could help patients with SPMS and PPMS

- Where patients can receive non-myeloablative HSCT in the US now

- Neurodegenerative treatment for non-active SPMS and PPMS

- Pseudo flares post HSCT and what can cause them…don't panic!

- Tweaking the healthcare system to make the patient first

- Medicine is a profession, healthcare is a business

LINKS:

Episode #1 on YouTube: https://youtu.be/ezjhqHtYA8Y

This episode, #2 of 2, on YouTube:  https://youtu.be/40dqLdIeZlc

Dr. Burt's book, EVERYDAY MIRACLES: https://www.amazon.com/Everyday-Miracles-Scleroderma-Autoimmune-Hematopoietic/dp/1637631251

Dr. Burt's website:  https://astemcelljourney.com/about/drrichardburt/

Email to apply for HSCT with Dr. Burt: [email protected]

THE MS GYM:

Website

YouTube

Facebook

Instagram

BROOKE SLICK:

Instagram

I'm super excited about these next two episodes!

Of course, any episode that has to do with HSCT (hematopoietic stem cell transplant) is super important to me. For the last 10 years, I've been a vocal advocate for HSCT. Screaming about it from the top of my lungs through social media, blogging, and to anyone who would listen or inquired. As you may or may not know, my co-host, Jodi, and I have both received HSCT for our MS. I had mine in Russia 10 years ago, and Jodi in Mexico in 2018. So when Dr. Richard Burt's team reached out to us to discuss all things HSCT, as well as his recently released book, Everyday Miracles, that puts forth, in lay terms, his long road to accomplishing his goals, we were beyond open to having the opportunity to ask all the questions we ever wanted to know. Those questions include the reasoning behind his choices for inclusion and exclusion of certain patients for this treatment...in particular, MS patients. Questions like…Which MS patients does this treatment work for? Who doesn't it work for? and why?

So who is Dr Richard Burt? He's the determined and innovative physician who pioneered the use of HSCT in the US. Within the HSCT community, he's considered the Godfather of HSCT, and yes, in case you're wondering, he IS the Dr. who treated actress Selma Blair.

For the last 35 years, with laser focus and blinders on to block out any peripheral static from naysayers, Dr. Burt has been quietly and methodically raging against the machine that is today's medical system.

Armed with the knowledge he gained while treating patients with leukemia with HSCT, he felt certain it could potentially halt the progression of certain autoimmune diseases and in many cases, reverse symptoms. So he plowed forward with a mission to prove his hypothesis. But it wouldn't happen overnight. There were randomized trials, hundreds of patients, many diseases and, in the end, life-changing success stories.

Dr. Burt was the first doctor in the US to give hope to patients with MS, Lupus, Crohn's, Stiff Person Syndrome and CIDP, when in the past they'd grappled with a life filled with a long list of ineffective drugs and certain disease progression.

To be clear, just because he was butting up against systemic red tape here in the US, doesn't mean he wasn't becoming a highly decorated peer by the international medical community and beyond. His list of awards granted by esteemed medical organizations is lengthy and impressive. I mean seriously, how many doctors do you know who've been presented with the "keys to the Vatican" in Vatican City, Rome? He was even recognized by Science illustrated for accomplishing one of the top 10 medical breakthroughs for the next 10 years. And, the forward for his book was written by the Dalai Lama!

Yes! Dr. Burt has got the juice! So much so that we had to squeeze it out in two full episodes. Both of which are packed with answers from pointed questions that you won't find anywhere else. Asked by HSCT veterans who, for over a decade, have been privy to all the insider speculation regarding Dr. Burt's methodology. Like why he will or won't treat certain MS patients, why he uses certain drugs in his protocol, and what he considers a successful HSCT. 

It's time to dig in and peel back the curtain on HSCT with Dr. Richard Burt.

EPISODE NOTES:

- Dr. Burt's book, Everyday Miracles

- Making HSCT easy to understand

- 54 patient stories

- Being a patient-oriented physician

- Insurance coverage

- How HSCT works

- The mistake of thinking that the stem cells are what resets your immune system

- Whose stem cells are used?

- Myeloablative or non-myeloablative HSCT…which one does Dr. Burt prefer for AI disease

- HSCT for cancer vs. an autoimmune disease

- Stronger protocols don't always mean better

- A one-time treatment

- How long will it last?

- The important role of measuring brain atrophy in MS progression

- The colonialistic attitude of doctors toward patients

- The risks associated with a myeloablative protocol

- What is the definition of a successful HSCT 

- The difference between active and non-active SPMS

- Neurodegeneration…it's tricky

- Ocrevus, neurodegeneration and progression to SPMS

- Your immune system is your ally

- MS drugs are toxins

- Why he used ATG as part of his HSCT protocol

LINKS:

This episode on YouTube: https://youtu.be/ezjhqHtYA8Y

Dr. Burt's book, EVERYDAY MIRACLES: https://www.amazon.com/Everyday-Miracles-Scleroderma-Autoimmune-Hematopoietic/dp/1637631251

Dr. Burt's website:  https://astemcelljourney.com/about/drrichardburt/

Email to apply for HSCT with Dr. Burt: [email protected]

THE MS GYM:

Website

YouTube

Facebook

Instagram

BROOKE SLICK:

Instagram

Let's travel the globe to chat with one of our international gym Member, Birgit.

We'll unpack her:

• Difficult diagnosis

The MS Gym Links

The MS Gym

Today we're going to be talking about integrative and functional medicine and how you can use them in tandem for your best and healthiest outcome while living with MS.

No matter where you are in the trajectory of your disease. Whether you've just been diagnosed or you've had it for 30 years, you may have asked yourself, "What can I be doing for myself above and beyond the drugs I'm taking, or the infusions I'm getting? There has to be something else."

That's where our next guest, Dr. Susan Payrovi, comes into play. Dr. Payrovi is the co-founder of True Medicine which you'll hear more about in this episode. She's board certified in integrative and functional medicine and has dedicated her practice to a whole-person approach to treatment that goes beyond simply throwing drugs at a patient to see what sticks.

Over and above her degrees that hang on her wall, Dr. Payrovi is even more uniquely qualified to provide advice to her patients because she herself lives with MS.

Please join Jodi and I in welcoming Dr. Susan Payrovi as she educates us on the power of lifestyle habits that can lead to lifelong wellness.

EPISODE NOTES

• What is integrative and functional medicine?

LINKS

DR. PAYROVI & TRUE MEDICINE

THE MS GYM:

Website

YouTube

Facebook

Instagram

BROOKE SLICK:

Instagram

Welcome to part two of our podcast about the gut and microbiome with coach William Dickinson.

In today's episode, we'll learn more about:

• The five pillars of good gut health (stomach acid, digestive enzymes, bile, motility and the gut mucosa)

Links:

The MS Gym

William Dickinson Linktree