Many of my keen insights and good ideas come in the middle of the night. While their timing is unfortunate, it is fortunate that I still have insights and ideas even with suffering from Parkinson’s Disease (PD) for nearly eleven years.
I’m still dancing around one of the many D words related to PD: dyskinesia. Dyskinesia is a relatively new experience for me, occurring since Deep Brain Stimulation surgery in May of 2005. Dyskinesia represents the worst features of the side effects of the medication, Sinemet. Dyskinesia is disgusting, degrading and demeaning.
I first observed dyskinesia a couple of days after my diagnosis at a support group for young onsetters with PD. I was traumatized to watch the flailing of their arms and legs and head-rolling movements. Sadly, I never returned to give or get support. I was a PD support group snob. I didn’t want to associate with those shaky folks, but then I became one of them.
I was haunted by images of Michael J. Fox and dyskinesia, and then by new PD friends suffering from it, and finally dyskinesia got a grip on me.
I was blessed by an Ah-Ha Moment in the middle of last night. The message revealed was that although I may think that PD and dyskinesia are disgusting, degrading and demeaning, the people living with PD are inspiring, courageous and determined. This light bulb of awareness made me realize that I needed to separate my feelings about PD and its symptoms from my feelings about myself and others living with PD. I thanked God for this moment of inspiration.
PS When I asked Mike, my accordion teacher, if he was freaked out by my episode of dyskinesia at my previous accordion lesson, he said, “No, I thought it was just part of the disease.” I was relieved. It was not good to freak out the accordion teacher.