Parkinson's disease (PD) is a viperfish that prowls through my brain, attacking my neurons and depleting me of much-needed dopamine… It’s also the fastest growing neurological disease in the world and, according to the authors of Ending Parkinson’s Disease, a pandemic. For those who know me, you know that I may have Parkinson’s, but Parkinson’s doesn’t have me.
I’ve been on a journey for the past few months to understand and reshape my relationship with PD. The program is called Day One: The Parkinson’s Prison and the Hero’s Journey to Escape! It was developed and is being taught by Robert Cochrane, PhD, an advocate and researcher for PD, as well as a caregiver for his own father, who was diagnosed with PD in 2001. This class has shown me that I may not be able to control what happens to me, but I CAN control my attitude, and how I choose to respond to the daily onslaught of symptoms.
I’ve discovered that I have kept myself in a prison of my own making - a Parkinson’s Prison of Fear. Fear of freezing, of falling, and of the future. I resent having to constantly be aware of when and how I move through space so that I don’t fall; I hate having to take meds every five hours; I despise passing mirrors and trying to remember to ditch the “mad face.” But through the cathartic writing of my individual story, I have come away with the courage to fight back. Storytelling matters because we are hardwired to learn from each other. Our stories give us power, agency and the ability to connect.
Parkinson’s has a terrible way of imprisoning not just our bodies, but our minds. So many of us hide what we’re thinking and feeling because we don’t want to be defined by PD, admit that we are angry, or that we may have lost our power. Today’s the day we declare it’s not okay to pretend PD isn’t “that bad”. It is that bad and we can end it if we act together, learning what our stories are and being brave enough to share them.
I need you to join us - to explore and share your story so we can end Parkinson’s disease. You can find out more about this program by clicking here.
Together, we will find a cure!