Parkinson’s disease (PD) is the thing that goes bump in the night. I can’t always see its physical effects, but I can always feel it there, lurking. 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 will not be scared, cowed, or cornered by this disease. I will continue to live as a survivor and not one being knocked down or taken prisoner.
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 permeates those dark feelings and frustrations and bubbles them to the surface. There they bob on the surface to be plucked out, one by one, and dealt with.
I’ve learned that I don’t have to keep the dark side covered. I can expose it to the light and see it shrivel away. 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 seen as weak. We have the potential, still, to be great and contribute. We don’t want to carry the shroud of anyone’s pity. 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. We’re having an online discussion with PMD Alliance on Friday, Aug. 11 at 12p (noon) Pacific.
Here’s the link: https://events.blackthorn.io/en/2EmH006/g/cSZj452wMK/ending-parkinsons-disease-with-the-heros-journey-5a224UvNRGO/overview
Benjamin ‘B.J.’ Bement