, UC San Diego
In May 2008 I left the neurologist’s office with my diagnosis. The tiny quiver in the little finger of my left hand? Parkinson’s disease. It was a month before my 49th birthday.
The years since then have been some of the most tumultuous and painful years of my life, but also have brought me the deepest love and the most precious friends any person could hope for. They have been years of greatest worry and despair, and years filled with the most precious memories. Some of my most creative work came out in these years, and I have published several well-received papers. But I have also missed more deadlines and disappointed more coauthors and editors than I can count.
My latest psych evaluation (a grueling half day of tests of memory, executive function, and inhibition) from last spring revealed that, in the six years since my last eval, I have only gotten stupider at the same rate that anybody my age gets stupider. That was my proudest accomplishment.
Many people ask me what it feels like to have Parkinson’s. There is no easy answer. The medications are a miracle in that they stop the pain, stiffness, and slowness. But this new “normal” is still totally different than the old normal. I take medicine every four hours. When they have my dopamine at its peak, I’m agile, quick witted, and very verbal—far moreso than the shy Jim from Wisconsin I used to know. When the dose is running low or, heaven forbid, if I’m late taking it, it is like my blood is replaced with sand and my muscles get invaded by termites, while my speech becomes breathy and slurred.
But even these descriptions are inadequate, as there really are no words that can have common meaning between you and me, even if you have PD too. Everyone experiences PD differently. While many of us have sleep issues and stiffness, we each experience them differently. Every person with Parkinson’s is truly alone…. But maybe this is just an awareness we share that is actually true for everyone, with or without PD. These regular reminders to love well and embrace every joy, small and large, is one of the gifts of PD. Annie and I, after being married just four years, have been careful to build and document a trove of memories. We’ve done so much – from travelling the world (ten countries together so far!) to ocean swims in La Jolla Cove. We even made a day of crossing all of San Diego’s walking bridges over the canyons!
A few days ago, Annie showed me a website produced by Pamela Quinn, a former professional dancer, who is about my age and has had her PD diagnosis almost twice as long as I have. That makes us both “early onset” people with Parkinson’s. In addition to stories about others with early onset PD, she has made several short films of dances she and others have performed about having PD. These performances are the closest thing I have found to telling my own story of living with PD. It also gave me the final bit of courage and community I needed to post this on my webpage.
The blog is called PD Movement Lab. There is a lot of good reading here, but the dances are especially compelling, at least to me. For these you visit the PD Art tab on her blog. The first piece, Welcome To Our World is lovely, but With Grace is the one that speaks to me and, in this case, my friends, the dance is also the best “words” to speak for me.
Thanks for reading this, and thanks for listening.