This blog is written by Susan Scarlett, a woman with PD and recent escapee from the Parkinson’s Prison. Please click the link for more information and to sign up for the next round of Day One: The Parkinson’s Prison and the Hero’s Journey to Escape!

Andy Dufresne was innocent.  Michael J Fox was innocent.  Muhammad Ali was innocent.  I was innocent.  I AM innocent!!! Everyone I know who has a Parkinson’s diagnosis is innocent and yet we have all been convicted, sentenced, and sent to prison.

In The Shawshank Redemption, Andy wasn’t facing a life imprisoned by a Parkinson’s diagnosis, of course; he was facing two court-ordered life sentences in prison. Michael and Muhammad and me?  We aren’t facing literal prison sentences and yet we face life sentences, too.  Muhammad has already served his entire sentence, though it ended far too soon.  We loved him; we mourn him.  Michael and the thousands of Parkinson’s prisoners who support us as we live out our sentences – we all have our own stories.  We are part of a greater whole.  I am just one person, just one voice. Does my voice matter? I say yes, and together with all the others, perhaps our message will be heard. Parkinson’s prisoners deserve respite, hope, and maybe even a cure. We need a permanent commutation of these lifetime sentences, and to get there, our voices need to be heard.  This is my story.

My trial felt like it took forever. Due to my widely-ranging symptoms, I could not present consistent evidence of my physical, emotional, or cognitive conditions. I was repeatedly returned to court for further questioning.  Eventually my trial ended and I was sentenced to live the rest of my life with Parkinson’s. This was my new reality, and while I had a thousand questions, I was given no time to ask them, as I was taken straight to The Parkinson’s Prison. I was no longer free. I was told that my sentence might include the possibility of a “honeymoon period” if I followed the rules – take the prescribed medication, Exercise regularly, and wear an ankle bracelet which signified to the world that I was a prisoner.  Little did I know that the bracelet was recording information about my physical, emotional, and cognitive functions, all the while being monitored by my Case Manager, Dr. Varga, a Movement Disorder Specialist.

Like everyone with Parkinson’s, I had good days and bad days. Dr.Varga said that my ankle bracelet confirmed my compliance with the rules, and she recommended that I be given a “honeymoon period” – a limited period of time off for good behavior. She adjusted my medications when needed.  That helped, and yet everyone understood it wouldn’t cure the disease.

Parkinson’s was and is still a life sentence.  How can 10,000,000 people around the world escape The Parkinson’s Prison? Andy Dufresne spent 19 years digging his way to freedom.  We need that level of determination. The Michael J Fox and Muhammad Ali Foundations have raised millions of dollars for research.  Their dedication is critical.  Unlocking the mystery of Parkinson’s is in the hands of thousands of people just like me. We need the world to understand that Parkinson’s was first identified in 1817, and that for more than 200 years, people with this diagnosis have been living in a prison of tremors, rigidity, balance issues, falling, fatigue, pain, hallucinations, Sleep disturbances, dyskinesias, Depression, Anxiety, memory problems and more.  It’s time to free these prisoners.

Originally Published on https://www.yesandexercise.org/

Robert Cochrane, PhD Yes, And...eXercise!

Dr. Robert Cochrane is a graduate of UNLV's Integrated Health Sciences department. He's researching the effect of improvisation and storytelling on Parkinson’s disease. He received grants from the Parkinson's Foundation and support from the Davis Phinney Foundation along the way. He is a popular, unique and high energy Keynote speaker, bringing joy, optimism and practical tools for people in the PD community to thrive today.

He has a background in filmmaking, with the Artisan Entertainment release, The Playaz Court, and two Stephen King-based short films among his credits. His father, Dan, was diagnosed with PD in 2001, which shifted Robert’s artistic lens to health. He made his first documentary, the award-winning Boys of Summer in 2004. There are two follow up films in the series with the fourth film coming in 2023.

He moved his family back to Walnut Creek, CA, where he grew up. He lives there with his beautiful wife, two teenagers who are, indeed, "all that" and is a proud care partner for his amazing parents.