Podcast Summary: MS Living Well – Mind Over MS: Strategies for Staying Positive

Host: Dr. Barry Singer
Guests: Ardra Shephard and Tyler Campbell
Date: October 1, 2024

Episode Overview

This episode explores the psychological challenges faced by people living with multiple sclerosis (MS) and highlights real-life strategies for maintaining hope and resilience. Dr. Barry Singer interviews two prominent MS advocates—writer and media producer Ardra Shephard and former college football player turned motivational speaker Tyler Campbell—to discuss coping with a new diagnosis, navigating progression, finding meaningful support, and embracing change.

Key Discussion Points & Insights

Ardra Shephard: Embracing Change and Redefining Support

Early Symptoms and Diagnosis

• Initial Symptoms (01:35): Ardra experienced optic neuritis and hearing loss at age 23, mistaking initial signals for more benign issues:

  “Honestly, I kind of thought I had a hangover. I was 23.” — Ardra (02:06)

• Diagnosis Experience: Rapid diagnosis due to classic symptoms; experienced significant fear and lack of knowledge about MS.

Finding Peer Support

• Peer Connection (03:15):

  “It was super important for me to find people who were the same age and life stage and disease stage.” — Ardra (03:19)

  • Created a local support “wine club” with other young women.
  • Noted drawbacks of traditional support groups for newly diagnosed younger patients.

Navigating Progression and Disability

• Transition to Progressive MS (05:51):
  • Emotional struggle and lack of resources as she moved from relapsing to progressive MS.

  “Almost as hard as being diagnosed was the transition from so-called relapsing disease to progressive illness.” — Ardra (05:51)

  • Concept of “smoldering MS” only recognized much later in her journey.
• Stigma and Equipment (09:00):
  • Psychological challenge of adopting mobility aids, facing public reactions, and overcoming self-judgment.
  • Used social media to destigmatize assistive devices:

    “I was no longer going to let the world tell me what these devices mean about myself.” — Ardra (09:33)

Advocacy and Creativity as Purpose

• Adaptive Fashion and Media (10:01):
  • Created and hosted “Fashion Dis,” a show highlighting inclusive fashion for people with disabilities.
• Coping on Bad Days (12:49):

  “I’m a fan of having a good old-fashioned meltdown. I think it doesn’t help to pretend that everything’s okay when it’s not.” — Ardra (12:51)

• Role of Real Support:
  • Emphasized needing multiple sources of support—spouse, friends, dog, and MS peers.

  “Ms. Or not, you need multiple resources to manage your psychology and your emotions.” — Ardra (13:35)

Becoming an Advocate

• Starting ‘Tripping on Air’ Blog (14:25):
  • Motivated by a desire to be understood and normalize stigmatized topics like self-catheterization.

Advice for Struggling Patients

• Medical and Social Help (15:37):

  “If you have anxiety and depression, I think it’s really important to get those things looked at medically. They’re medical issues, and there are many, many things that can help.” — Ardra (15:37)

  • Stressed the importance of finding new purpose and community, creatively reinventing identity post-diagnosis.

Final Reflections

• On Future Possibilities (18:43):

  “What I learned having MS that I didn’t know when I was diagnosed is that all my best days weren’t behind me.” — Ardra (18:43)

Tyler Campbell: Acceptance, Advocacy, and the Power of Movement

Diagnosis and Athletic Challenges

• Onset as an Athlete (19:36):

  “My first symptom was a wealth of fatigue. I did not understand why I was so lethargic during training.” — Tyler (19:39)

• First Major Relapse (20:39):
  • Sudden paralysis and loss of function after a football game:

    “Instead of getting out of bed and walking, I got out of bed and I fell on my face.” — Tyler (21:03)

• Quick Diagnosis (22:18):
  • Access to collegiate sports medicine led to rapid identification of MS.

Concealing Diagnosis

• Hiding MS from Coaches (23:40):

  “To this day, I never had a conversation with a coach about my disease.” — Tyler (23:43)

  • Feared losing his scholarship and educational opportunities.

Hitting Rock Bottom

• Lowest Point (25:20):
  • Isolation from teammates and first experience of erectile dysfunction.

  “That thing that I thought defined me bigger than football was taken. And that was the lowest of the lows.” — Tyler (26:26)

Turning Point and Advocacy

• Path to Advocacy (26:56):

  “When I started to accept...life started to give me back. I understood what patient advocacy could potentially be for me.” — Tyler (27:19)

  • Channeled personal struggle into supporting other African American men and young people with MS.
  • Openness and public speaking started three years after diagnosis.

Building Support and Village

• On Disclosing to Others (29:18):
  • Stressed readiness and self-acceptance before sharing diagnosis, especially in dating.
• Support Network (28:37):

  “My mother and my father embraced and loved me...those were the individuals that helped me pull.” — Tyler (28:37)

Practical Coping Tips

• Finding Your Village (30:07):

  “You have to continue to work to find your village. And your village can be one person...You can’t fight it by yourself.” — Tyler (30:07)

  • Encouraged participation in support groups, in-person or online.
• Movement as Medicine (31:13):

  “If all you have is the functionality of a finger, then doggone it, move the finger more than you did yesterday.” — Tyler (31:21)

  • Advocated for physical activity at any level and time in nature as mental health boosters.

Evolving Perspective

• Shift in Values (33:04):

  “I value time probably a lot more...the gift that came back to me was I started having more relationships of meaning with people because MS slowed me down.” — Tyler (33:04)

  • Developed deeper listening and appreciation for others’ stories.

Overcoming Shame

• Final Thoughts (36:04):

  “I just hope that today we can move shame out of the window and we can help people begin their next steps on their journey mentally and physically with MS.” — Tyler (36:04)

Notable Quotes & Memorable Moments

• “It was super important for me to find people who were the same age and life stage and disease stage.” — Ardra Shephard (03:19)
• “Moving into that gray area of progression is much more subjective...for me it was a real struggle.” — Ardra Shephard (05:51)
• “I was no longer going to let the world tell me what these devices mean about myself.” — Ardra Shephard (09:33)
• “I’m a fan of having a good old-fashioned meltdown.” — Ardra Shephard (12:51)
• “My first symptom was a wealth of fatigue.” — Tyler Campbell (19:39)
• “You have to continue to work to find your village...You can’t fight it by yourself.” — Tyler Campbell (30:07)
• “If all you have is the functionality of a finger, then doggone it, move the finger more than you did yesterday.” — Tyler Campbell (31:21)
• “I value time probably a lot more...the gift that came back to me was I started having more relationships of meaning with people because MS slowed me down.” — Tyler Campbell (33:04)
• “What I learned having MS that I didn’t know when I was diagnosed is that all my best days weren’t behind me.” — Ardra Shephard (18:43)

Important Timestamps

• 01:35 – Ardra’s first MS symptoms and rapid diagnosis
• 03:19 – Importance of finding peer support
• 05:51 - 09:59 – Navigating progression, stigma, and embracing mobility aids
• 12:49 – Coping with bad days and need for multiple support sources
• 14:25 – Ardra’s advocacy journey and breaking taboos
• 18:43 – Message of hope for newly diagnosed patients
• 19:39 – Tyler’s initial symptoms as a student athlete
• 21:03 – First major relapse and sudden physical loss
• 23:43 – Concealing diagnosis out of fear for athletic future
• 25:20 - 26:36 – Rock bottom: isolation and erectile dysfunction
• 27:19 - 28:35 – Acceptance and path to advocacy; support systems
• 30:07 – Value of building your “village” and support group
• 31:13 – Importance of movement and being outside
• 33:04 – Perspective shift and the value of connection

Conclusion

This episode provides an honest look at the emotional landscape of life with MS, from the shock of diagnosis to the hurdles of adaptation and ongoing mental battles. Both guests model vulnerability, resilience, and proactive self-care—empowering listeners to seek the support they need, redefine their identities, and find purpose beyond MS. The enduring message: no one has to face MS alone, and a fulfilling, meaningful life is possible at every stage of the journey.