What we can’t see in PD – and why it matters
James Parkinson wrote “An Essay on The Shaking Palsy” in 1817, identifying the disease for the first time in medical and academic circles. For as many things as he got right, he excluded the Mental Health impact of Parkinson’s disease (PD) on those who live with it. Incredibly over 200 years later, we’re still dealing with the impact of this omission.
People with PD are chronically underdiagnosed in terms of their mental health. While many people with PD (PwPD) report the mental health issues are at least as much if not a greater part of the struggle with PD, many physicians continue to proliferate their focus on the physical aspects. Their reasons are understandable. Physicians treat what they can, while researchers are the ones charged with exploring the unknown. The problem is researchers lack data – what does the mental health side of PD look and feel like?
We, the people living with PD (both diagnosed and care partners) can answer that with our stories. Deep, clear, engaging stories that plumb the depths of who we are, what we feel, experience and notice – and what we want. Well-told stories stick with the audience long after they have ended. They attach to our brains in ways we are hardwired to accept and embrace. Stories work.
This is precisely the work we do in our Cinema Therapy classes at Yes, And…eXercise! Take a look at one example from Terri Van Bibber, who engaged in our Turning PD Inside Out class, featuring the brilliant Pixar film, Inside Out.
As is often said in the world of research, there needs to be more. The “more” is our calling. We need you – all of you – to join us to explore, discover and share your stories so we can get what we all need: a cure. Let us not be afraid of the alleged impossible.
Our Cinema Therapy program will continue with two very exciting offerings in January 2025:
The Shawshank Hero’s Journey – our flagship program where Andy and Red show us the meaning of hope, rebirth and achieving the impossible.
Back to the Future – celebrating 40 years since Marty and Doc taught us the meaning of gravity, time-flux capacitors and 1.21 gigawatts!
The only timeline to explore is the one we create. Today’s the day.
To paraphrase Andy Dufresne: Get busy writing or get busy dying.