The MS Gym Podcast

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November 25, 2020  

A TALE OF TWO HSCT FACILITIES : Two Veterans Compare Notes on Their HSCT Experiences in Russia & Mexico

HSCT (hematopoietic stem cell transplant) veterans Brooke Slick and Jodi Feltham sit down for a one-on-one to discuss the differences between having HSCT done in Mexico and in Russia. These facilities are currently two of the most popular HSCT treatment facilities around the world, and due to their similar protocols, they are often the two that are most-compared before making a final decision. In this episode, Jodi and Brooke break down the differences into bite-size pieces that are easy to digest.

Be sure to check out the links below to access resources discussed in this episode.

EPISODE NOTES:

  • What is HSCT?
  • The types of MS and EDSS score
  • Discovering HSCT
  • The drugs/treatments that failed before deciding to pursue HSCT
  • Choosing a facility from all the options
  • The two types of protocols and which one is riskier
  • The types of protocols Mexico and Russia utilize
  • The cost of treatment
  • Financing the treatment
  • Lodging
  • Which facility requires a caregiver
  • Lodging
  • Where does the patient stay and where do friends/family/caregivers stay?
  • Creating lifelong bonds with other patients and families
  • Pre-testing
  • When does the chemotherapy begin?
  • The #1 fear-inducing part of treatment
  • Your attitude/mindset going into HSCT
  • Gratitude
  • The EDSS (mobility score) cutoff for acceptance
  • Recovery
  • Physical therapy after HSCT
  • The value of The MS Gym during recovery
  • A myth of HSCT
  • The ultimate goal of HSCT
  • The mistake of waiting until you're "bad enough"
  • Beware of scam stem cell facilities
  • Do your research
  • If a stem cell treatment does not include chemotherapy, it isn't HSCT
  • Advice to up-and-comers
  • Patience during recovery is paramount
  • What will set you up for disappointment?
  • Is it experimental?
  • Regrets

RESOURCE LINKS:

MS Society HSCT Recommendations Article

HSCT Facebook Group - Russia

HSCT Facebook Group - Mexico

Clinical Ruiz Website

National Pirogov Medical Surgical Centre Website

Brooke's HSCT Blog

The MS Gym

Brooke Slick

November 11, 2020  

Cultivating Community Through Coffee Chats

As the world continues to adjust to the ever-changing normal it's more important than ever to find connection in a safe community.

Today's podcast highlights the many benefits of The MS Gym Coffee Chats, yet another perk of being a member.

Two of the Coffee Chat hosts, Deb & Erica, join me today to discuss:

  • How the Coffee Chats came to be
  • How they keep the atmosphere light and positive despite the chaos going on around us
  • The connection forged between members
  • The benefits of Buddy Groups
  • How their own lives have been enriched as hosts

Links

The MS Gym

October 28, 2020  

ACCESSIBLE TRAVEL with Sylvia Longmire of Spintheglobe.net: Traveling Fearlessly with a Disability

Today's episode is all about wheelchair and accessible travel, but our guest, though an international expert in this field, brings way more to the table than just that. For instance,

She's an award-winning accessible travel writer, blogger and photographer, travel agent, author, entrepreneur and disability rights advocate.

She's a service disabled US Air Force veteran, full-time wheelchair user, single mother and former Miss wheelchair USA.

She's the founder of the award-winning Spin the Globe travel blog where she shares her traveling experiences from around the world in a power chair. She shares tips and tricks from her own travels, she gives fellow wheelchair users the tools and the confidence to create their own travel adventures without fear. Her travel articles have been featured in the New York Times, New Mobility Magazine and Lonely Planet and she's published three accessible travel-related books. And, I don't want to forget her 130 travel-related videos that she's created and produced from around the world. Videos led to voiceover work and that led to voiceover acting.  She is a powerhouse!  But there's more...

Though all Sylvia's accomplishments I've mentioned so far are related to what we're going to be talking about today, I'd be remiss if I didn't mention one of the most intriguing areas of her resume. Sylvia is an expert on Mexico's drug war and border security, and has been a frequent guest on CNN, MSNBC, Fox News, NBC Nightly News, to name a few. She's also been a guest expert on the History Channel's Brad Meltzer's Decoded in America's War on Drugs and has consulted for producers of the National Geographic Channel's Border Wars and Drugs Inc. series She is also an author of two books on these issues as well as hundreds of articles for Homeland Security publications.

To say that Sylvia is "more than her MS" wouldn't do her accomplishments any justice.

Join me now as I get the inside scoop from Sylvia on why travel post-disability IS possible, is way more accessible than you might imagine, and how your dream of traveling solo with a disability is absolutely achievable. 

EPISODE NOTES:

  • A quote to set the tone
  • Documenting everything
  • The psychological grieving process
  • Preparing for what's to come
  • Anticipating medical retirement
  • Keeping one foot in the door of her career
  • Pivoting from drug trafficking, border security and human trafficking to her passion for travel
  • Travel as a form of healing
  • Finding the confidence to travel alone with a disability
  • How a 16-hour flight to Dubai set the bar
  • Becoming a professional travel blogger and the birth of Spin the Globe
  • How doing your homework on a destination is key
  • Accessible travel 101
  • Identifying your limitations
  • Taking incremental steps to find your comfort zone
  • Traveling solo
  • Asking for help
  • The biggest travel-related setback she's encountered so far
  • Frankfurt and a broken scooter
  • Timing layovers to accommodate your ability
  • The country that is surprisingly more accessible than you might think
  • Patience, patience, patience
  • Personal boundaries
  • Projecting positivity while traveling in a wheelchair
  • Being grateful for what you CAN do
  • Wheelchair vanity. It's a thing.
  • When people look at your mobility device as cool
  • Arranging MS drug therapy with your travel schedule
  • Three things a traveler with a disability should never travel without
  • Being resourceful when hotel accessibility is a challenge
  • Wheelchair accessible cruising
  • Cruising during the Covid era
  • Expert advice to new wheelchair users
  • Adapt and overcome
  • Where to find all of Sylvia's resources

LINKS:

Spintheglobe.net - Sylvia's blog, travel consultations/opportunities, books (travel & drug war-related), photos, cool merch, media kit and more!

The MS Gym

Brooke Slick

 

 

October 14, 2020  

MS, Mayhem & Motherhood: A Journey from Unsuspecting to Expecting

The Canadian MS Society states that:

  • 77,000 Canadians live with the disease
  • MS can occur at any age, but is most often diagnosed between the ages of 20-49
  • MS affects individuals during the peak years for education, career and family-building
  • MS is 3 times more likely to affect women than men 

Today’s guest Melissa Hayes candidly shares her struggles and challenges with:

  • Her Diagnosis at age 23
  • Starting a new career in the midst of multiple MS symptoms
  • Having multiple relapses at once
  • Worsening of her disease while on a Disease Modifying Therapy (DMT)
  • Raising a toddler
  • Reaching out for help
  • Having to enlist the help of daycare
  • Family planning
  • The fear of the future

But the story doesn’t end there. Melissa also shares her goals and dreams for the future with her:

  • New DMT
  • Finding the MS Gym
  • Improvements of MS symptoms through daily exercise
  • Accountability and Buddy Groups
  • New baby
  • Gratitude
  • Belief for herself and her healing
  • Vision and her "WHY"

LINKS: 

THE MS GYM

October 5, 2020  

RADICAL ACCEPTANCE: Acknowledging your current reality at the present moment

I wanted to welcome you all back from summer break and give you a taste of what to expect this upcoming season. If you haven't already heard the announcement, Jodi Feltham, who already plays a huge role in the organization of the MS Gym behind the scenes will be joining me this season as a co-host. To say I'm thrilled would be an understatement. Jodi's episodes will be focusing on member victories, struggles and lifestyle, while my episodes will continue to feature guests related to all things MS life. Add to that, freestyle episodes where Jodi and I bounce MS-related topics off each other, plus select recordings of Jodi's fan favorite, Motivation Mondays, and the new season is guaranteed to keep you tuning in. Let's get started with Jodi's Motivational Monday from this week titled radical acceptance.

 
EPISODE NOTES:
 
Is acknowledging your current reality at the present moment - whether it's what happened or what is happening
 
It does not mean:
 
- I approve of it
- I think it's fair
- I like it
- That I'm being passive or giving up
- I agree with what happened
 
Why practice radical acceptance?
 
- Fighting reality only creates suffering
- While pain is inevitable, suffering is optional
- Suffering is what you do with that pain and the interpretation you put on the pain.
- Acceptance brings opportunity to heal
- When we accept it than we can think about how we want to change it
- If we spend all our energy fighting it then we have no energy left to change it
- What reality are you having difficulty accepting?
 
LINKS:
 
 
July 31, 2020  

CLINICAL TRIALS, MEDICAL TREATMENT AND THE BLACK MS COMMUNITY: A History Lesson with Dr. Mitzi Joi Williams, Damian Washington & Jenna Green

EPISODE NOTES:

I recently had the opportunity to be part of a round table discussion that focused on how the medical history of yesterday affects the decisions of black patients in the MS community today.

At the table we have neurologist, Dr Mitzi Joi Williams aka, Dr. Mitzi, who was recently part of the MS Gym Summit; MS advocate, Damian Washington, who is also the creator of the popular YouTube vlog No Stress MS; along with MS advocate, blogger and Instagram phenom Jenna Green, creator of the blog Full of Grit and Grace.

Take a listen as Dr. Mitzi unpacks the complicated history of medical distrust for us.

RESOURCE LINKS:

DR. MITZI JOI WILLIAMS

To schedule an appointment with Dr. Mitzi:  Joi Life Wellness Group

For more information on Dr. Mitzi, visit her personal website, to book her as a speaker, purchase her books, or read her blog, at https://drmitzijoimd.com/

Instagram: @thenerdyneurologist

DAMIAN WASHINGTON

YouTube:  No Stress MS

Instagram: @damianwashington

Twitter:  @deedubs57

JENNA GREEN

Website: Full of Grit and Grace 

Instagram:@thejennagreen

Mentioned in this episode:

Book: Medical Apartheid - The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present

Documentary: 13th

THE MS GYM

Host: Brooke Slick

 

June 29, 2020  

AN UPDATE AND AN INVITATION!

Hi everyone! It's Brooke, and I'm popping on to let you know about an exciting project we've been working on, and, to celebrate the one-year anniversary of our move to an interview format of the podcast.  I'm going to share some fun little statistics about the progress we've made and who we're reaching with our content. I'll also be sharing a link to registration to The MS Gym Thrive Summit below. So let's get started!

LINKS:

Link to MS Gym Thrive Summit Registration

The MS Gym

Brooke Slick

May 5, 2020  

LIVING IN THE “NOW” AND “NOT YET”: Why Crystal Balling is Futile

One of the many advantages to belonging to the MS Gym community is getting to listen to Jodi Feltham's weekly Motivation Monday video on the MS Gym's Facebook page. This week's episode of Motivation Monday was so thought provoking, I knew it was one that our podcast listeners needed to hear. Now, let's put down our crystal balls and let Jodi put things into perspective for you.

EPISODE NOTES:

-Getting stuck in the "used tos"

-If only I had or hadn't

-Questioning past treatment choices

-Comparing your past condition with your present capabilities

-Stealing present victories

-The danger of comparison

-Living in the future

-Crystal balling for negatives and positives

-Will I be able to XYZ?

-Unproductive patterns

-The futility of future gazing

-Results obsessed or efforts focused?

-Are you proud of what you've done today?

-A timeless quotation that applies to life with MS.

LINKS:

The MS Gym

Host: Brooke Slick

April 24, 2020  

COVID-19: THE UNEXPECTED EQUALIZER

In this episode, we'll take a look at the world's response to COVID-19 through the eyes of someone with MS or a chronic illness, plus 15 predictions for life post-COVID.

EPISODE NOTES:

- MSrs watching the meltdown

- Having to think the unthinkable

- The lengths you have to go to survive

- What once was a given is now a privilege

- Watching it all go up in flames

- Sacrifices made

- Logistical hardships

- Dreams on hold

- COVID-19 doesn't give a damn

- Just another war story

- Before and after landmarks

- The gifts of unfettered time

- Are you fearful or excited about life post-COVID?

- 15 predictions for life post-COVID

- What lessons will you have learned?

- Time is a gift

LINKS:

The MS Gym

Brooke Slick

 

March 21, 2020  

CORONAVIRUS/COVID-19: Weighing Your Risks with MS

In this impromptu episode, I'll be sharing information that I've gained regarding the Coronavirus, also known as COVID-19, and its impact on those who have MS.

The Coronavirus is the potentially deadly virus that reportedly surfaced in China in December of 2019 and has now swept the globe in what is now considered pandemic proportions. With this episode, I'm hoping to arm you with information that will quell your fears and help you to safely move forward as we all navigate this hopefully once in a lifetime occurrence. Just like MS, this virus knows no border, so we're ALL impacted. Please listen as I do my best to inform you about what may or may not put someone with MS at higher risk of contracting or fighting off the virus.

EPISODE NOTES:

-The interview that inspired this episode

-Dr. Aaron Boster of the Boster Center for Multiple Sclerosis and actor and MS advocate Damian Washington

-The risks that may or may not be specific to people with MS

-Does MS put you at higher risk for contracting the virus?

-Will someone with MS struggle fighting off the disease

-What symptoms to look for

-The incubation period

-How you can contract the virus

-Where the virus likes to hide

-Clean everything!

-6 tips on how to avoid contracting the virus

-Who is it high risk?

-The risk for people with MS

-The list of which MS drugs put MSrs at the highest risk

-Injectables, pills and infusions

-Damian and Dr. Boster's Q&A

LINKS:

UPDATED CDC RECOMMENDATIONS FOR MASKS!

INTERVIEW - Coronavirus/COVID-19 - MS Views and News – with Damian Washington & Dr. Aaron Boster

Damian Washington’s NoStressMs - YouTube Channel

MS Views and News - YouTube Channel

Dr. Aaron Boster - YouTube Channel

The Boster Center for Multiple Sclerosis

The MS Gym

Host: Brooke Slick

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