The MS Gym Podcast

Episode: Serving Under the Umbrella of Advocacy
Hosts: Jodi Feltham & Brooke Slick
Guest: Michelle, MS Gym member
Date: March 5, 2025

Episode Overview

This episode spotlights Michelle, a long-term member of the MS Gym community. Michelle shares her journey from her early MS diagnosis through post-secondary education and a career devoted to advocacy and helping others. She discusses the challenges of balancing health, work, and passions, and offers candid insight into medication choices, lifestyle adaptation, and the importance of self-advocacy for people living with MS.

Key Discussion Points & Insights

Early Diagnosis and Initial Reactions

• Diagnosis Story:

  • Michelle was diagnosed with MS in 1997 at the age of 22.
  • First symptom: sudden numbness on the right side of her body after a shower.
  • An unresolved ear infection led to an MRI. Lesions were found, followed by a neurologist referral and a confirming spinal tap.
  • Rapid progression from no symptoms to clear diagnosis (00:49).

• Family History:

  • Michelle’s father, and cousin (father’s brother's daughter) also have MS.
  • She highlights the term “familial” rather than “hereditary”—noting it often runs male-to-female in her experience (04:09).

  “I was told that it's not hereditary but familial and it's often passed down from the male to the female.”
  —Michelle (04:09)

• Early Challenges:

  • At 22, Michelle had just finished college and was starting her career in social services (03:04).
  • She was proactive in seeking out roles where her Spanish fluency could serve diverse populations (03:45).

Progression & Physical Impact

• Course of Disease:

  • Initially relapsing-remitting, transitioned to secondary progressive MS between 2006 and 2009 (01:36).
  • Relapse in 2002 left her with significant mobility issues in her right leg (01:08); now uses a walker to conserve energy.

• MS Symptoms:

  • She experienced significant neuropathic pain for three years, which eventually resolved as suddenly as it had started (05:15).

Medication and Treatment Experience

• Timeline of Medications:

  • Delay in initial treatment due to 1990s protocols: didn’t start drugs until four years after diagnosis (06:20).
  • Tried Avenex (self-mixing), Copaxone, Tysabri, Gilenya, Rituxan, Ocrevus, Mayzent, Kesimpta (06:44–08:39).
  • Switched drugs due to side effects, JC virus status, or efficacy decline.
  • Stresses importance of MS-specialist over general neurologist (13:39).

  “It's something that was impossible then, but to go on medication right away, to find yourself not a neurologist, but an MS specialist.”
  —Michelle (13:39)

Adoption of Exercise and the MS Gym

• Lifelong Movement:

  • Exercise has always been central to her life—before and after MS diagnosis (08:59).
  • Doctors and therapists advised that “exercise is the best medicine.”
  • Discovered the MS Gym around three years ago—calls it “the best thing that ever happened to me” (09:45).

  “With the exercises I do myself and the PT I do myself, I feel like it's keeping me, it's maintaining.”
  —Michelle (10:14)

Career Shift & Advocacy

• Work and Volunteering:

  • Started as a social worker; later earned a Master’s in School Counseling (03:04).
  • Left full-time employment due to MS fatigue around 2008, switched to part-time and eventually volunteer roles (10:24).
  • Currently volunteers in a school and helps at a women's clinic as a Spanish interpreter (11:59).

• Passion Projects:

  • Maintains Spanish fluency with online lessons.
  • Hopes to travel again, especially back to Spain (12:24).

Self-Advocacy & Advice

• Therapist Praise:

  • Therapists have called her “the exception” regarding the rigor of her exercise and self-care routine (13:00).

• Advice for Newly Diagnosed:

  • Urges early treatment, finding a knowledgeable MS specialist, and self-advocacy.
  • Strongly advocates for building a relationship with care providers—not being “just a number” (13:39).
  • Encourages openness to mental health counseling and medication for emotional support when needed.

  “To not be a number. To make sure your MS specialist hears you, sees you, listens to you, and to keep moving.”
  —Michelle (13:50)

  “No one's gonna baby you or pamper you. You have to fight for you, fight for your rights.”
  —Jodi (15:07)

• Importance of Tenacity:

  • Emphasizes persistence in healthcare (15:51).
  • Repeatedly notes, “If you don’t [advocate for yourself], you’ll just be passed by.” (16:03)

Support and Openness

• Support Network:

  • Attributes much of her resilience to her supportive friends and family (16:44).
  • Advises others to disclose MS diagnosis to employers only after hiring (17:09).
  • Stays open about diagnosis with others as part of her advocacy.

  “My friends and family have been there 100. I couldn't ask for anything better. I'm lucky, very lucky.”
  —Michelle (16:44)

• Learning Over Time:

  • Has learned much more about MS since her diagnosis due to increased research, advocacy, and internet access (17:47).
  • Expounds on epidemiological nuances, such as the higher prevalence among those of Northern European ancestry and the ambiguities around genetic causes (18:31).

• Perspective for Newly Diagnosed:

  • Michelle and Jodi reflect that, while MS is never a good diagnosis, today's new treatments offer hope for significantly improved outcomes (19:23).

Notable Quotes & Memorable Moments

• On Resilience:

  “I get very anxious when I'm not moving.”
  —Michelle (09:05)

• On Persistence:

  “We learn words like tenacity and persistence and all those things that other people might perceive as annoying, but we know, we know what it takes.”
  —Jodi (16:15)

• On Self-Advocacy:

  “It's definitely one thing I've learned since being diagnosed to be, to speak up, to be your own advocate. Because a lot of times if you don't, you'll just be passed by.”
  —Michelle (16:03)

Important Timestamps

• Diagnosis and Early Experience: 00:49–05:55
• Medication Journey: 06:20–08:43
• Discovery of MS Gym/Exercise Philosophy: 08:59–10:14
• Career, Advocacy, and Volunteering: 10:24–12:49
• Advice & Self-Advocacy: 13:39–16:15
• Support Network & Openness: 16:44–17:28
• Changes in MS Knowledge & Resources: 17:47–19:23

Conclusion

This candid, empathetic conversation with Michelle offers a window into the practicalities and emotional realities of living—and thriving—with MS. By foregrounding self-advocacy, tenacity, and the importance of staying connected to passions and community, this episode encapsulates the MS Gym Podcast’s philosophy of “living a life by design, not diagnosis.”