The MS Gym Podcast: "Get Out There... AND LIVE"

Co-hosts: Brooke Slick & Jodi Feltham
Guest: Sarah (MS Gym Member, UK)
Date: January 8, 2025

Episode Overview

In this episode of The MS Gym Podcast, co-hosts Brooke Slick and Jodi Feltham have an in-depth conversation with Sarah, an MS Gym community member from Lancashire in the northwest UK. The discussion explores Sarah’s decades-long journey with multiple sclerosis (MS), her adventurous spirit, adaptability, and the tools and routines she uses to live a vibrant, self-determined life—despite her diagnosis. The conversation touches on themes of resilience, innovation in MS management, the importance of social and family support, and the value of seeking out joy and connection.

Key Discussion Points & Insights

1. Sarah’s MS Journey and Independent Spirit

• Early Symptoms and Diagnosis

  • Sarah recalls experiencing her first symptoms at age 11 (a persistent ankle issue) and later, at 13, a bout of Bell’s palsy. Despite these early warning signs, she continued to lead a busy and fulfilling life, excelling at languages, traveling, and embracing new experiences.
  • “I just lived my life as you live your life and that was it really.” (Sarah, 01:17)

• Adventurous Young Adulthood

  • Sarah spent time studying in Germany and traveled solo through South and Central America, volunteering and teaching English.
  • “I really, really enjoyed it. It was just a really good time.” (Sarah, 03:14)
  • Her international experiences shaped her self-view and resilience.

2. Life in the UK and Diagnosis

• Work and Onset of MS Symptoms

  • On returning to the UK, Sarah joined her family’s demanding catering business, which ultimately aggravated her MS symptoms due to heat and physical strain.
  • She was officially diagnosed with MS at 28 after experiencing increasing weakness and mobility difficulties.

• Early Management and Family Business

  • Sarah initially tried medication (Copaxone) and soon after, her family sold their business—a shift that coincided with her growing physical challenges.

  • “I walked really badly. Really, really badly... I think I got a wheelchair almost as soon as we got married.” (Sarah, 08:25)

3. Treatment Innovations and Progress

• HSCT (Stem Cell Therapy) in Mexico

  • In 2017, Sarah underwent Hematopoietic Stem Cell Transplantation (HSCT) in Mexico, a pivotal intervention in her journey.
  • “Post-HSCT, I’m an awful lot better. My eyesight is a huge amount better. My tremors are a huge amount better. My walking’s quite a lot better.” (Sarah, 09:41)

• Discovering the MS Gym & Community

  • Sarah became an early member of The MS Gym, crediting the program—and its founder, Trevor—for helping her regain function and confidence.

• The Mollii Suit: New Technology for MS Symptom Management

  • Sarah uses a Mollii Suit (a neurostimulation suit akin to a wearable TENS unit), describing transformative cognitive and physical effects.
    • “It just makes me really clear... my eyesight just like, oh, you look around and it’s like... But when I’ve done my Mollii suit, I can see families.” (Sarah, 12:35)
  • She typically uses the suit three times a week, combining the sessions with MS Gym exercises for maximum effect.
  • The suit also enhances her core strength and gives her a stronger sense of bodily awareness.

4. Adaptive Tools and Embracing Life

• Mobility Aids & Remaining Active

  • Sarah describes her fast power chair, scooter, and her determination to engage in social and recreational life, including going to concerts and outings with her husband.
    • “MS is not managing me, I’m managing it by getting all these things together that make a big difference to my life.” (Sarah, 15:23)
  • Sarah sees her adaptive tools—Mollii suit, MS Gym, mobility aids—as empowering, enabling her to take charge.

• Support Networks

  • Sarah shares that, in addition to her husband and family living nearby, she has a network of local friends and enjoys a supportive, community-oriented town.
  • Her current dogs, while not assistance trained, provide companionship and motivation to get outdoors.

5. Living a Life by Design, Not Diagnosis

• Attitude & Mental Health

  • Sarah stresses the importance of remaining active, social, and positive, even on difficult days. Nature, social outings, and her dogs are her go-to strategies for boosting her mood.
    • “Going outside... walking the dogs out in the wind and the rain.” (Sarah, 20:10)

• Perspective on Disease-Modifying Therapies

  • Reflecting on the evolving landscape of MS treatment, Sarah notes that while new drugs offer options, there’s no “one size fits all”—everyone’s MS is different.

    • “How you manage it, isn’t it? It’s how you, how you live your life with what you’ve got.” (Sarah, 23:54)

• Advice to the Newly Diagnosed

  • When asked what she’d tell someone newly diagnosed, Sarah’s advice is direct and uplifting:
    • “Get out and live your life. Active as you can be. Be as social as you can be, as happy as you can be.” (Sarah, 24:36)

Notable Quotes & Memorable Moments

• Sarah on HSCT’s impact:
  “Post-HSCT, I’m an awful lot better. My eyesight is a huge amount better. My tremors are a huge amount better. My walking’s quite a lot better.” (09:41)

• On using the Mollii suit:
  “It just makes me really clear... my eyesight just like, oh, you look around and it’s like... But when I’ve done my Mollii suit, I can see families.” (12:35)

• On resilience:
  “MS is not managing me, I’m managing it by getting all these things together that make a big difference to my life.” (15:23)

• On advice for the newly diagnosed:
  “Get out and live your life. Active as you can be. Be as social as you can be, as happy as you can be.” (24:36)

Timestamps for Key Segments

• [00:48] – Sarah’s first symptoms and early years
• [03:01] – Traveling and volunteer work in South America
• [05:53] – Entering the family catering business and MS symptom escalation
• [08:21] – Initial management and transition to using a wheelchair
• [09:22] – HSCT in Mexico and resulting improvements
• [10:23] – Finding the MS Gym and early community involvement
• [11:03] – Mollii suit experience and transformative effects
• [15:23] – Philosophy of managing MS
• [18:20] – Role of social and family support
• [20:10] – Coping strategies for hard days
• [22:05] – Reflections on advances in MS therapies
• [24:36] – Sarah’s advice to newly diagnosed listeners

Episode Tone & Closing Thoughts

The conversation is candid, warm, and empowering—reflective of both hosts’ positive support and Sarah’s adventurous, pragmatic outlook. Listeners walk away with a sense of Sarah’s undiminished zest for life and practical hope: that living well with MS is possible through adaptability, self-advocacy, and the embrace of new opportunities and technologies.