EP-131 Rollercoaster Moments: How a 12-Year-Old Named Evie Sees Parkinson's

I'm Not Dead Yet!

When 12-year-old Evie chose to make Parkinson's disease awareness part of her Bat Mitzvah project, she opened a window into how this condition affects not just patients, but entire families across generations. Her grandfather's diagnosis four years ago became a pivotal moment for their family, but not in the way you might expect.
What emerges in this candid conversation is a refreshing perspective on family communication during health challenges. While many families shield children from difficult medical realities, Evie's family took a different approach. They shared the diagnosis immediately, creating space for questions, conversations, and ultimately, a stronger bond between Evie and her grandfather. "I feel like I can talk to him about it more than I could when I was younger," she explains, demonstrating how transparency has allowed their relationship to deepen rather than become strained.
The wisdom Evie shares belies her young age, particularly when she describes her philosophy on chronic illness: "Diseases are sometimes like roller coasters. You sometimes will go up and be happy, but you don't know when it can go down." This insightful metaphor captures the unpredictable nature of Parkinson's while maintaining space for joy and connection. Her mother Leslie complements this perspective by highlighting how her father's proactive approach to managing his symptoms through specialized exercise, his positive outlook, and his willingness to maintain normal family activities like travel has created a template for resilience.
For families navigating similar terrain, this episode offers both practical insights and emotional reassurance. The conversation touches on finding community support, maintaining normality amid health challenges, and the power of intergenerational communication. Most importantly, it demonstrates that a diagnosis doesn't have to define a person or their relationships. As Evie simply yet powerfully states, "Parkinson's is a disease, but it also shouldn't define somebody." Listen, share, and join our community of supporters by subscribing and following our work at PCLA.

• 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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Chapters

1. EP-131 Rollercoaster Moments: How a 12-Year-Old Named Evie Sees Parkinson's (00:00:00)

2. Introduction to I'm Not Dead Yet Podcast (00:00:01)

3. Meeting Evie and Her Bat Mitzvah Project (00:01:34)

4. Family Response to Grandfather's Diagnosis (00:04:22)

5. Maintaining a Positive Attitude Together (00:07:22)

6. Connecting with Others Through Shared Experience (00:10:55)

7. The Parkinson's Roller Coaster Perspective (00:16:24)

8. Awareness and Final Thoughts (00:22:56)