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Multiple Sclerosis Podcast, hosted by Brooke Slick and Jodi Feltham: For Living a Life by Design not Diagnosis
Episodes
Wednesday Nov 08, 2023
Wednesday Nov 08, 2023
Social media is all around us and is a valuable tool for spreading knowledge, influencing others, and creating awareness. Today, we will learn from Toronto-born Christina Andaya as she shares about how she uses social media to:
- Create community and share about her own MS journey
- Raise awareness about atypical MS symptoms and unusual diagnosis in minority ethnic groups
- Collaborate with organizations, such as MS Canada and #sothisisMS
- Showcase her involvement in the Miss Galaxy Canada competition
- Explore career opportunities
Learn more about Christina Andaya.
Christina Andaya - Social Media Marketing Specialist
Thursday Oct 19, 2023
Thursday Oct 19, 2023
Today's episode is a super special one because I get to reintroduce and/or introduce the MS Gym to the masses.
The MS Gym has been around for almost 6 years and has thousands of followers, but there are upwards of 3 million people worldwide who have MS, so there's always someone newly diagnosed out there or just discovering us who may want to know more about exactly who we are.
Who's the founder? Where's it located? What's it all about? How can I benefit from it? And, what does it cost?
Our audience is going to get all of that information and more in today's episode as I had the unique opportunity to have an in-depth conversation with the creator and founder of the MS Gym, Coach Trevor Wicken. Let's goooo!
EPISODE NOTES:
- Its founder, programs, and pricing
- Reintroducing The MS Gym
- What is it?
- What is neuroplasticity?
- The role of the central nervous system.
- The brain is plastic
- The truth about neural pathways
- Trevor's credentials
- His own neurologic events
- Defending MS practitioners who don't have MS
- Fighting for people's lives
- The free online resources and where you can access them
- The difference between the free MS Gym information and the paid for program
- When you want more structure
- Details on the paid-for products and programs
- The Members Only Corner (MOC)
- The value of community and connection
- Mindset training
- A healing lifestyle
- Can you continue your regular exercise while using The MS Gym programs?
- Where to start
- Two of the most popular free programs
- Programs for people who use wheelchairs and/or mobility aids
- Full program pricing: semi-annual, annual, monthly
- Link to a promotional discount for podcast listeners
- Are the programs self-paced?
- The MS Gym app
- Consistently up-leveling the programs
- What the MS Gym isn't
- A fun random question about food
LINKS:
THE MS GYM:
The MS Gym Programs and Products with Pricing:
Membership Program including Members Only Community (MOC)
SPECIAL PROMOTION PRICING! (mentioned in this podcast episode)
BROOKE SLICK:
Thursday Jun 08, 2023
Thursday Jun 08, 2023
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.
Things like...Is your vacation rental gonna have steps? Is it going to have an elevator? Are you going to be able to get to your connecting flight fast enough through the airport? Are you going to hold everybody back because you're slow? Are you even going to be able to enjoy yourself on the trip? You know what I'm talking about.
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
- 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:
Solax Transformer Automatic Folding Scooter
Bruno Scooter Lifts for vehicles
THE MS GYM:
BROOKE SLICK:
Wednesday May 17, 2023
Wednesday May 17, 2023
In today's MS Gym podcast episode, we'll chat with MS Gym member Kim as she shares about her:
- Symptoms and rare diagnosis
- Brain biopsy
- Family life
- Career in mental health
- Support system
- Love for MS support groups
- Inspirational mindset
- Independence and self-determination
- Priorities for living well
- Use of imagination to activate movement
- Desires for inclusivity and awareness
- Ability to break obstacles down into smaller, manageable parts
MS Gym Links: The MS Gym
Join host Jodes Feltham, on Instagram, TikTok, or Facebook Reels to learn more about disability awareness and inclusion.
Thursday Apr 06, 2023
Thursday Apr 06, 2023
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: BURTRRMSTrial@scrippshealth.org
THE MS GYM:
BROOKE SLICK:
JODI FELTHAM:
Wednesday Mar 22, 2023
Wednesday Mar 22, 2023
Today, we'll chat with one of our Original Gymmers, Jan J, and learn about her:
- Misdiagnosis and surgical treatment
- Primary symptoms and their impact on her life
- Change in occupation
- Adventures living in foreign lands
- Love for travel and how that looks after diagnosis
- Introduction to the The MS Gym
- Love for the Members Only Corner Facebook group
- Strategies to keep calm and maintain a positive outlook
- Ability to find joy in daily chores
- Future travel plans and bucket list destinations
- Goals for finding continued freedom
- Advice to keep moving your body
The MS Gym Links:
Wednesday Mar 01, 2023
Wednesday Mar 01, 2023
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
Join me on my advocacy journey:
Thursday Feb 16, 2023
Thursday Feb 16, 2023
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: BURTRRMSTrial@scrippshealth.org
THE MS GYM:
BROOKE SLICK:
Thursday Feb 09, 2023
Thursday Feb 09, 2023
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: BURTRRMSTrial@scrippshealth.org
THE MS GYM:
BROOKE SLICK:
Wednesday Jan 25, 2023
Wednesday Jan 25, 2023
Let's travel the globe to chat with one of our international gym Member, Birgit.
We'll unpack her:
- Difficult diagnosis
- Relief with finding answers
- Active lifestyle
- Career and accommodations
- Difficulty educating colleagues about MS
- Lifestyle choices with food and exercise
- Discovery of The MS Gym
- Choice to pursue medications
- Acceptance and convictions of her disease and choices
- Transparency with close friends and family about her diagnosis
- Honest and open relationship with her neurologist
- Tools to stay calm and focused on her difficult days
- Advice to the newly diagnosed
- Future travel plans and whale watching adventures
- Passion to mentor the newly diagnosed in her community
- Her love for the Members Only Corner
The MS Gym Links