Day One: PD Superheroes is a novel, online intervention that aims to improve quality of life measures for people with Parkinson's. We completed the six-month pilot program 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. Please click on the videos below for interviews with participants from the initial study. This program was made possible by a generous grant from the Parkinson's Foundation.
UPDATE: The second round of the program began on February 26, 2022! If you would like to be considered for future studies, please email Robert here.
All too often, people are diagnosed with Parkinson's, 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 on how to have a positive mindset and face their challenges with strength, confidence and resilience.
People with Parkinson's (PD) commonly report quality of life issues including stress, anxiety, stigma, isolation and depression. Many of these symptoms can be correlated to how those with 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 program 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.
Conclusions & What's Next
Because every person with Parkinson's journey is unique, it is essential for each person to know, take ownership of and use their story to advocate for what they need - from medical providers, care partners and their communities. The first round of this feasibility study, which ended in April 2021, helped participants do that. The Parkinson's Foundation has generously agreed to another round of funding for the program in 2021-2022. The original participants will continue their journeys, furthering their own understanding and become mentors for others who haven't yet begun their heroic journey to understanding how to live their best with Parkinson's. New participants who are considered early onset or are within one year of their diagnosis are strongly encouraged to apply once IRB is completed. Feel free to contact Robert, the creator and facilitator this program, with questions.
For more information, please contact Robert, the program's creator and facilitator.