a 501(c)3 non-profit org.
“The cave you fear to enter holds the treasure you seek,” Joseph Campbell
Parkinson's disease (PD) is more than a movement disorder. In order to care for and provide the best quality of life for people with and affected by PD, we must explore, understand and share our stories.
These unique, engaging, and evidence-based writing programs were developed and tested in an Interdisciplinary Health Sciences doctoral program. We utilize the principles Cinema Therapy, to understand why we keep going back to our favorite films, what they are saying to us and how we might use what we see, hear and feel to positively impact our lives.
Participants meet online, for 90 minutes once a week for 16 weeks to explore a film broken down against Joseph Campbell's Hero's Journey. We then share our writing with each other, learning and discovering we are not alone. We develop strong ensembles and build communities of courage and action with our stories.
There are currently nine versions of this program, with more coming soon, inspired by popular films that inform the Hero's Journey. Click below for more on each of the films and how we use them.
"I'm a prisoner in my own body," Muhammad Ali
The stories we tell ourselves shape our reality, including how we feel about Parkinson’s disease, whether we are conscious of them or not. The feeling of being trapped, stuck and isolated are commonly reported by people with Parkinson's. Dr. Ray Dorsey, author of Ending Parkinson’s Disease, says the PD community needs to speak up.
In this powerful new evidence-based class, developed in a PhD study, people with, affected by and serving the PD community, will explore, write and share their stories from the perspective of feeling imprisoned by PD. What stories are keeping you locked up?
See the schedule below for current and upcoming classes.
Full course
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We are seeking sponsors to allow writers in the PD community who don't have the funds to participate. Click on the above pdf for details.
CURRENT CLASSES:
Fielding your Dreams Start/End date: June 18, 2024 - Oct. 1, 2024
The Shawshank Hero's Journey Starts Sept. 2, 2024
UPCOMING CLASSES:
On Golden Pond - October 2024
Deadpool - 2025
The Green Mile - 2025
Stand by Me - 2025
Back to the Future - 2025
Sponsorship
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Need help with your tuition?
Please don't let the cost of the program keep you from signing up. Click on the fundraising document (to the left) to learn how you can fundraise to earn your tuition.
Fundraising
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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 in the panel above.
Day One: our origin story
The original program was called "Day One: PD Superheroes". It began as a nearly thrown-away idea in a grant writing class in Robert's second semester as a PhD student in the Interdisciplinary Health Sciences program at UNLV. Thankfully, Robert's fellow student turned Mentor, Dustin Davis, saw enough in it to keep asking questions and encourage Robert to continue. Robert proposed a novel, online intervention that aimed to improve quality of life measures for people with Parkinson's. He received a grant from the Parkinson's Foundation and approval from UNLV's IRB board. The six-month pilot feasibility study ran from October 2020 to 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 first two studies.
The Need
All too often, people are diagnosed with Parkinson's disease (PD), handed a flier 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.
Dr. Ray Dorsey, author of Ending Parkinson's disease, has said that the PD community must raise its collective voice by telling the real stories of what having PD feels like, just as successful social campaigns like Mothers Against Drunk Driving, the HIV/AIDS movement and March of Dimes have. This program address that need directly. Many people want to tell their story but don't know how.
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.
Methods
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.
For more information, please contact Dr. Robert Cochrane, the program's creator and facilitator.