Day One: The Parkinson's Prison
(and how to escape!)
"I'm a prisoner in my own body," Muhammad Ali
The stories we tell ourselves shape our reality, whether we are conscious of them or not.
Storytelling researcher Brene' Brown says that stories are data with soul. To that end, researchers need this valuable data to know what research needs to be done. The feeling of being trapped, stuck and isolated are commonly reported by people with Parkinson's.
In this powerful new class, people with and affected by Parkinson's, will explore their stories from the perspective of being imprisoned. What stories are keeping you locked in? This new program begins in 2023.
Day One: PD Superheroes!
Day One: PD Superheroes is a novel, online intervention that aims to improve quality of life measures for people with Parkinson's. It was developed as part of Robert's PhD program in the Interdisciplinary Health Sciences program at UNLV. We completed the six-month pilot feasibility study in April 2021, with 16 participants from across the US and UK. The qualitative feedback was excellent, with all participants requesting a continuance and expansion of the program. Nine of the 16 participants continued to become mentors for the second cohort, which began its hero's journey in May 2022. Once again, participant feedback was excellent. Results are being written up into a study with intent to publish as a peer-reviewed article. Please click on the videos below for interviews with participants from the studies. This program was made possible by a generous grant from the Parkinson's Foundation.
If you would like to be considered for future studies, please email Robert here.
All too often, people are diagnosed with Parkinson's disease (PD), handed a flyer with information and told, "we'll see you in six months". The goal of this program is to bridge that gap of fear and isolation, helping to empower those with PD and their care partners on how to better understand and take control of their narrative of what it means to live with PD.
People with Parkinson's (PwP) and their care partners commonly report quality of life issues including stress, anxiety, stigma, isolation and depression. Many of these symptoms can be correlated to how those with and affected by PD feel about themselves, what they've lost and what comes next. Day One is a novel and unique program that helps participants understand their relationship with PD and heroically embrace their challenges.
The first cohort met online for one hour, once a week, for 27 weeks from October 2020 through April 2021. This was a feasibility study. 16 Participants learned about the hero's journey, often associated with Joseph Campbell's work, to better understand their own heroic role within their relationship to Parkinson's. We also practiced improvisation to build confidence, resilience, motivation and trust within the ensemble. Weekly writing assignments kept participants conscious and aware of each step of their journey. Participants produced several unique expressions of their journeys in a class-concluding celebration, demonstrating pieces of what they had learned about themselves and their relationship to PD.
With the second group, we attempted to reach a wider variety of people with PD by moving class meetings to Saturday mornings, trimming the number of meetings from 27 to 13 and extending the meeting time from one hour per session to 90 minutes. We recruited several early onset members and military veterans. We also welcomed our first care partner of a PwP to the study.
The Hero's Journey
Joseph Campbell is the researcher and academic who adventured into our world's mythology, crossing cultures, geographies, religions, and historical periods, dating back to Neanderthals drawing on cave walls, to bring the Hero's Journey to light. This 12-step version is a modified interpretation with credit due to author, Christopher Vogler ("The Writer's Journey"). This model was the backbone of the Day One curriculum, providing structure to help guide people with PD and a caregiver through their own heroic journey of what it means to have PD. Participants also watched clips from Star Wars: A New Hope and Boys of Summer: First Base to see heroic journeys in action. Robert and Susan break down the steps of the hero's journey in the videos below.