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

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 sharing honest conversations about life with Parkinson’s disease. Through interviews with patients, caregivers, advocates, and experts, TIP aims to educate, reduce stigma, and build a community around the realities of living with Parkinson’s. Learn more: https://www.thisisparkinsons.org Contact: [email protected] ━━━━━━ ꕤ 🔔 🩵 ⟢ Thank you for watching and supporting TIP. Your support helps amplify the voices of the Parkinson’s community and brings greater awareness to this disease. Learn more about your ad choices. Visit megaphone.fm/adchoices