The MS Gym Podcast: “Fine-Tuning Your Focus”

Hosts: Jodi Feltham & Brooke Slick
Guest: Carrie (Longtime MS Gym Member from Australia)
Release Date: February 5, 2025

Episode Overview

This episode features an in-depth conversation between host Jodi Feltham and Carrie, an Australian member of The MS Gym. Carrie shares her journey living with Inclusion Body Myositis (IBM), a rare muscle-wasting disease often misdiagnosed as Multiple Sclerosis (MS) or ALS. The episode explores Carrie's diagnostic process, her approaches to symptom management through exercise and diet, the unique challenges of living with a rare illness, and the crucial role of community and mindset in well-being.

Key Discussion Points & Insights

1. Carrie’s Diagnosis Journey

• Initial symptoms included weakness, difficulty with stairs, falling, and trouble using her hands.
• Experienced years of being dismissed by healthcare providers (“It’s your age, menopause, arthritis.”)
  • “You make all these adaptations without realizing.” – Carrie [03:47]
• Diagnosis was eventually confirmed as Inclusion Body Myositis (IBM) after EMG testing (muscle electricity) and clinical evaluation. She opted out of a muscle biopsy because of family obligations and the lack of treatment options.
  • “There is no treatment... the only thing that has shown benefit is exercise.” – Carrie [06:23]

2. How IBM Relates to MS

• Many overlapping symptoms with MS: hand weakness, trouble gripping, tripping, fatigue—frequently leading to confusion and misdiagnosis.
  • “So many of the symptoms that you have... are an overlap.” – Jodi [07:11]
• Main differences: IBM lacks spasticity and has distinct muscle wasting patterns (hands, quadriceps, dorsiflexors).

3. Path to The MS Gym

• Found the MS Gym via the Wahls Protocol and other online MS communities while researching ways to help her daughter with health issues.
• Inspired by seeing exercise and dietary changes help her daughter, she dove into research on IBM and MS.
  • “I love Trevor’s energy... I just loved him.” – Carrie [10:04]
• Joined The MS Gym online for the accessibility, affordability, and sense of community.

4. Dietary Management & Impact

• Adopted the Wahls Protocol (gluten-free, dairy-free, high in vegetables and clean protein) after experiencing severe fatigue and dysphagia (swallowing issues).
  • “Within three weeks, I could swallow those pills at night again. My fatigue had just lifted.” – Carrie [14:24]
• Noticed immediate setbacks when reverting to old eating habits, underscoring the impact of diet.
  • “That night I couldn’t swallow again. So in those early days, that was really convincing.” – Carrie [15:18]
• Became a Certified Wahls Protocol Coach and traveled internationally for deeper community connections and ongoing learning.

5. The Power of Community & Peer Support

• The rarity of IBM means limited local support; the MS Gym offers daily connection, motivation, and shared experiences.
  • “There’s only like 30 of us... in my state in Western Australia.” – Carrie [20:41]
• Regular participation in “buddy groups” within the MS Gym helped maintain exercise consistency and foster a sense of belonging.
  • “That gave me that consistency of actually doing that sort of three times a week.” – Carrie [21:41]

6. Adapting, Tracking, and Technology

• Carrie tracks falls and symptoms in a diary to monitor progress and setbacks, finding self-accountability helpful.
• Uses adaptive devices (trekking poles, wheelie walkers, lightweight electric wheelchair) as recommended by the MS Gym community.
  • “The trekking poles definitely came from Trevor, otherwise I’d just be using a cane.” – Carrie [24:31]

7. Balancing Life, Self-Care, and Future Goals

• After returning to work, recognized the added stress and its impact on symptoms—ultimately decided to reprioritize health and meaningful events.
  • “So every six to twelve months, I still do all the testing... and I’m staying above the norm.” – Carrie [23:21]
• Focused on staying well enough to travel, especially to visit her daughter abroad, and on building in-person and online social communities.
  • “One thing for me is staying able to visit my daughter in Italy... Another is reconnecting socially with friends and family.” – Carrie [28:07]
• Plans to return to Wahls Protocol coaching and continue consistent daily exercise for well-being.

8. Mindset: Resilience, Gratitude, and Flexible Self-Compassion

• Importance of resilience through tracking, gratitude practice, and flexibility with daily limitations.
  • “I try and do at least three self-care things every day... and every night trying to do three gratitude things.” – Carrie [31:18]
• Accepting the need for aids for safety and energy conservation.
  • “I’d really like it if I can get back to walking without having to use the wheelie walker, but I’d rather be safe.” – Carrie [31:27]
• Powerful analogy on chronic illness:
  • “It’s like being at the beach and trying to dig a hole in dry sand. Whenever you stop, it starts to fill in.” [32:29]

Notable Quotes & Memorable Moments

• On Medical Gaslighting:
  “...at that point it was like, ‘Oh, you’re overweight, you’re menopausal, you’ve probably got arthritis, it’s your age.’...You make all these adaptations without realizing.” – Carrie [03:03]
• On the Acceptance of No Treatment:
  “I didn’t have to make any decisions...maybe that was a positive. I didn’t have to decide what treatment.” – Carrie [06:00]
• On Dietary Change Results:
  “Within three weeks, I could swallow those pills at night again. My fatigue had just lifted.” – Carrie [14:24]
• On Tracking and Awareness:
  “I record my falls in my phone diary so I can go back and look...when I go off, when I indulge in things...this is when I fall over.” – Carrie [17:54]
• On Community in Rare Disease:
  “There’s only like 30 of us...in my state in Western Australia...the Ms. Gym was the importance of the positivity, the things people are trying to do.” – Carrie [20:41]
• On Adaptability and Energy Conservation:
  “Because of the Ms. Gym now, for me, it’s been so transformational. Monday to Friday...meet up and exercise...that just sets my day off so well.” – Carrie [34:13]
• Metaphor About Chronic Conditions:
  “It’s like being at the beach and trying to dig a hole in dry sand...Whenever you stop, it starts to fill in.” – Carrie [32:29]

Timestamps for Important Segments

• [01:25] Carrie's diagnostic journey and rarity of IBM
• [06:23] No treatment for IBM—exercise as primary tool
• [09:36] Research-based exercise regimens and the power of consistency
• [14:24] Immediate impact of diet on fatigue and swallowing
• [20:41] Challenges of finding peer support in rare disease
• [24:31] Adaptations and assistive technology for independence
• [28:07] Future goals: travel, coaching, and rebuilding a social life
• [31:18-32:29] Importance of self-care, safety, and the ‘dry sand’ analogy

Episode Tone

Warm, practical, and empathetic—balancing clinical detail with the emotional realities of chronic illness. Both Jodi and Carrie are thoughtful, supportive, and solution-focused, with a strong sense of international community.

In Summary

This episode is a testament to living beyond a diagnosis—finding adaptation, connection, empowerment, and joy despite the very real challenges of a rare chronic condition. Carrie’s story offers universal lessons for anyone managing MS or related illnesses: the value of active self-management, supportive community, tracking progress, and “fine-tuning your focus” to live by design, not by diagnosis.