It was 10 years ago this afternoon, January 30, 2000. I was driving on Alligator Alley from Miami to Naples, Florida, trying to let it all sink in.
A doctor — a preeminent one in the world of movement disorders — had just diagnosed me with Parkinson ’s disease. He put his hand on my shoulder and said, “It’s not a death sentence, it’s a life sentence.” He gave me a sampler pack of Mirapex and a prescription for more when I got home.
My eyes focused on the road, I couldn’t even hear the music on the radio.
“Parkinson’s disease. Well, it’s official.”
We had expected this would be the diagnosis. From that day in November when a neurologist at a Naples hospital told me the tests showed no tumor, no stroke, but the way I walked and reacted to other tests indicated PD, we were pretty sure this would be the result.
Still. Now it was official.
The doctor who broke the news explained that it was very early in the disease process, and that I likely had a number of “good years” ahead of me. How many? “No way to say for sure. It’s different for everyone.”
As the Everglades whizzed by on the left and right of the car, I did a survey of my current symptoms. The cramping, the dropping of stuff with my right hand, the occasional difficulty finding the right word. I tried to think ahead, wondering what the future would be like for me. Surely they’d find a cure for this thing by the time I would be disabled by it, right? I mean, all this new stuff with embryonic stem cell research and all… whoever wins the 2000 election will SURELY allow federal funding to continue and they’ll HAVE to have a cure for this thing five years from now, ten at the outside…
Ten years. And the science has advanced. Not as far as it might have, given President Bush’s bowing to superstition and the eight years we wasted by not funding ESCR. But there’s been Deep Brain Stimulation, which I had in 2007. It only affects the areas that are also helped by levodopa/carbidopa, so it does nothing for my gait or balance, or the onset of dementia that I feel is beginning to insidiously creep into my frontal lobes… But as I said in an article in the July 2009 US News and World Report Online, I have no way of knowing how much worse I’d be if I did NOT have the DBS.
Ten years. Zipping across Alligator Alley, Parkinson’s was a concept. A thing I knew that I had. But I had no idea.
Ten years. Now I can’t walk outside without a walker or a cane and my wife’s hand to hold onto. I can’t close my eyes when I kiss her because I’ll fall backwards if I do. I have to take tiny, baby steps or I’ll lose my balance. My libido is gone, we have to sleep in separate beds because of the REM Sleep Disorder that comes with PD, my face shows little to no emotion, my voice is getting breathy and hoarse and when I DO talk, I have to sometimes stumble and fumble my way through a sentence, going back to correctly pronounce words, and ensure I’m making sense. I’m having problems swallowing food, my nose runs like a faucet from the moment I get up until the moment I go to bed, I have to sit down to take a shower, I’ve had “accidents” in the realm of “continence”, it’s difficult to focus on work or anything else, I get the “stares”, I’m repeating myself a lot, I freeze when I walk, and my chest is congested nearly every evening.
Sorta makes a feller wonder what the NEXT ten years is gonna be like.