It’s time we got serious about Ending Parkinson’s disease - the book and the movement.
My latest writing class with PD participants, “Day One: The Parkinson’s Prison and the Hero’s Journey to Escape” is 10 weeks into their 16-week journey and they are producing fantastic work that demands to be seen. Similar to the previous classes I tested during my PhD studies (and published this article), we’re using Joseph Campbell’s hero’s journey as a guiding force to help students examine, redefine, and share their stories about what it means to have PD in their lives. The main differences in this program are the framing of the Parkinson’s prison, which refers to self-limiting belief systems people in the PD community entrap themselves with, and the movie that serves as our central study piece. In previous sessions, we used Star Wars which was good from the standpoint of understanding the hero’s journey broadly. This time, we’re using The Shawshank Redemption to focus on the prison motif - and how to escape. It has turned out to be an extraordinarily rich well of inspiration.
One of the main themes that has come out of the group as they’ve been developing their writer’s voices has been their frustration with the lack of a cure or further treatments. They’re speaking their truths in colorful, engaging pieces that, I believe, will do exactly what the book, Ending Parkinson’s Disease is calling for: bring attention to PD in a way that helps drive the needed changes we’re all after. The authors of that book have said that the PD community is often “too nice” and they don’t speak up in the ways Mothers Against Drunk Driving and the leaders of the HIV/AIDS movement did to get the changes they needed. They have also flatly called for more stories - the kind that speak from deep in the heart and can move mountains. The roots of that are in my current group, and I can develop more of these voices for us through this program. These are people ready for action, as evidenced in one of my student’s pieces which she opens with the famous quote from the film, Network: “I’m mad as hell, and I’m not going to take this anymore!”
So now I call to you to join this growing force: I am starting a second round of this course in mid August and I need to get more students signed up. Here is a link to a video trailer that gives more information: DayOne Trailer. Please share this with your PD communities as people with PD, care partners, family members and providers are all welcome in this class and needed in this movement. You can find out more and sign up for the next class that begins in August by clicking here.
I think it’s safe to say we all wish there was a cure for PD. The time has come to act upon that wish by raising our collective voices, learning how to tell our stories in ways that make an impact. Let’s come together to break out of the Parkinson’s Prison.
My best to you,
Robert Cochrane, PhD