Episode

Ep. 10 Finding Help, Then Finding Hope. Luke and Allison’s Story | This is Parkinson’s Podcast

Podcast
This is Parkinson's
Published
May 13, 2026
Duration seconds
1939
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https://traffic.megaphone.fm/CTCPO3400291183.mp3
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Summary

When the "Standard" Plan Changes: Gene Therapy, Godwinks, and the Power of Persistence. On this episode of This Is Parkinson’s, host Lisa Volenec sits down with her friend Allison Stieb for a raw, conversational look at the hurdles of seeking care from rural Nebraska. So, what do you do when you’re told there’s a nine-month wait just to see a specialist? If you’re Allison Stieb, you keep pushing until you find a "Godwink." Allison shares the incredible story of how a chance connection led her husband, Luke, from a frustrating standstill to the "ground floor" of a cutting-edge gene therapy clinical trial at Mayo Clinic in Arizona. We also dive into the reality of being a caregiver, the sticker shock of private insurance, and the emotional rollercoaster of pivoting from Deep Brain Stimulation (DBS) to a brand-new medical frontier. In this episode, we talk about: The "Squeaky Wheel" Effect: How persistence (and a little help from friends) can bypass nine-month waiting lists. Gene Therapy vs. DBS: Understanding the "one and done" potential of new clinical trials. The Caregiver’s Perspective: Navigating the shift from independent life to a "new normal" on the farm. Financial Realities: The high cost of Parkinson’s and the unexpected relief of trial-funded care. Hit that Follow button to join our community. Whether you’re a patient, a caregiver, or an advocate, we’re here to show you that you don’t have to navigate this journey alone. ━━━━━━ ꕤ Support the mission of This is Parkinson’s Donate here: https://bit.ly/thisisparkinsonsdonate ━━━━━━ ꕤ Follow us: Instagram: https://www.instagram.com/thisisparkinsonsofficial Facebook: https://www.facebook.com/thisisparkinsons ━━━━━━ ꕤ About This is Parkinson’s: This is Parkinson’s is a nonprofit storytelling platform dedicated to sha…