How to Train Your Mind for Progressive Rare Disease
When a rare disease is progressive, hope can be hard to hold onto. How do we face the realities of a rare condition that progresses over time, while keeping the power of hope alive?
Welcome to Rare Resilience, a podcast about rare disease and mental health. Hosted by psychologist and father Dr. Al Freedman, we explore stories of people who have lived with and survived rare disease, and the challenges they overcame along the way.
In this episode, we are joined by father, musician, writer, and educator Pat Moeschen. Pat lives with limb-girdle muscular dystrophy, a progressive neuromuscular condition which affects his mobility. He works with young men living with MD at Parent Project Muscular Dystrophy, where he leads the Adult Advisory Council.
Pat opens up about his long journey with progressive rare disease. With great humor, he explains how his mind and thinking evolved over time as his disease progressed. He shares stories of adapting to life in a wheelchair, raising kids as a parent with rare disease, and why true mental resilience can be found by those willing to notice the little things.
Thank you so much for listening! If you like what you hear, remember to subscribe to Rare Resilience wherever you get your podcasts.
Rare Resilience is produced by BloodStream Media. For more information or to start a podcast of your own, visit bloodstreammedia.com.
Show Notes:
To read Pat’s writing, check out his blog Moeschen!
To read Josh Winheld’s autobiography, check out Worth the Ride: My Journey with Duchenne Muscular Dystrophy
A message from Dr. Al:
To all the rare families out there watching or listening, remember. Anything is possible. Never give up. And we’re all in this together.