A Parkinson’s diagnosis usually comes from a doctor. But learning how to actually live with Parkinson’s happens somewhere else.
In this episode, we chat with Katie Webster about the gap between medical care and the day-to-day reality of living with Parkinson’s — and why community, education and trusted resources matter so much.
They discuss how organizations like Changing Parkinson’s and resources like The Secret Life of Parkinson’s podcast can help people feel less alone, better understand what they’re experiencing and become more confident navigating life with Parkinson’s.
Katie also shares why creating a safe, trusted community is so important, the emotional journey that often follows diagnosis, and how resources for newly diagnosed individuals, exercise programs and patient-led education can help fill some of the gaps traditional healthcare simply can’t.
Because sometimes the first step into the Parkinson’s community isn’t walking into a support group. Sometimes it’s pressing play.
Chapters
00:00 Introduction to the episode and guest
00:28 The purpose of the podcast and nonprofit
02:25 Addressing the gap between diagnosis and reality
04:18 The importance of community and feeling safe
06:14 The impact of community on new diagnoses
08:04 The role of the podcast in education and support
12:10 The reach and impact of the podcast at the World Parkinson's Congress
16:48 Challenges in growing a nonprofit organization
22:55 The emotional journey of diagnosis and acceptance
26:57 Resources and support tools for newly diagnosed
27:23 Call to action and closing remarks
