EP - 129 The Parkinson's Club: Finding Strength in Struggle

Simon's voice carries the weight of a decade battling Parkinson's disease as he shares his raw, unfiltered experience with dystonia – one of the condition's most debilitating manifestations. Despite undergoing deep brain stimulation surgery twice, Simon continues to struggle with both the physical torment of involuntary muscle contractions and the emotional burden of depression and apathy that often accompany Parkinson's.
The conversation takes a profound turn when Simon contrasts his journey with co-host Travis Robinson's more resilient approach. "Travis is the blitzkrieg of Parkinson's patients," Simon remarks with admiration, describing Travis's "cake or death" philosophy of pushing through difficulties. This striking juxtaposition highlights a crucial truth rarely discussed in chronic illness narratives: there's no single "right" way to face Parkinson's disease.
What makes this episode particularly valuable is its unflinching examination of the darker aspects of living with Parkinson's. Simon courageously admits, "I'm not winning the battle," giving voice to countless others who feel similarly overwhelmed but lack the platform to express it. The hosts thoughtfully explore how the medical community, despite their expertise, still grapples with Parkinson's complexity. As Simon notes, "Even the movement disorder specialists don't know that much... their guesses are just far more educated than ours."
The conversation ultimately builds toward a powerful message of community and connection. Whether through support groups, writing (Simon will be contributing a column called "Simon Says" to the PCLA website), or honest conversations like this one, breaking isolation proves essential. As Judy beautifully summarizes: "We're doing it collectively. If we stand together, we can make changes."
Ready to hear more unfiltered conversations about living with Parkinson's? Subscribe to our podcast and join our community at PCLA.org where you'll find resources, support groups, and others walking similar paths.

• Co-hosts: Judy Yaras & Travis Robinson
• Editor & Audio Engineer: (EP1-100) Spencer Yaras
• Audio Engineering Intern: Ana MacAller
• Social Media Intern: Ana MacAller

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