(I have recently been diagnosed with Idiopathic Parkinsonism, a spectrum disease with no known cause and a generally less than pleasant outcome. I've decided to do what writers do - I'm going to use my website to write about this affliction until I can write no more... then I'll ask someone to write for me.
They say that if you fall into a black hole, you never know it because it tears you apart slowly along the way...
I don't know, let's find out.)
I’ve known for a year that something just wasn’t right, although in retrospect I can trace it back another four or five years. I first began to notice it as a walking problem – I couldn’t keep from shuffling and scuffing my feet. Walking, which had always been such a natural activity, increasingly became a game of chance: I was never sure exactly where my feet would come down.
Daily life also began to change in subtle but noticeable ways. I sometimes found that I had to coax my muscles into performing simple tasks that they normally did automatically: things like brushing my teeth, tucking in my shirt, or getting out of the car. I began to have trouble maneuvering in the shower or trying to roll over in bed. And there was this indefinable, but ever-present gap, a pause, a hesitance as if my body was stalling while my brain struggled to figure out what to do next.
I finally sought medical help. My family doctor shared my concern and sent me to an orthopedic specialist, who sent me to a neurologist, who stuck needles into my arms and legs and ran electric current through them. (I discovered that I broadcast in FM.) Blood tests were ordered, I had an MRI and visited a physical therapist. The verdict finally came down: peripheral neuropathy (nerve deterioration in my limbs) and Idiopathic Parkinsonism, or at least the symptoms thereof.
There is no single test for it. It is an assortment of symptoms that slowly manifest themselves: tremors, fatigue, problems walking, poor handwriting, softening of the voice, stiffness. Like autism, it seems to be a spectrum, a continuum. In my case, it could eventually lead to dementia – the thing that just killed my mother. Because she had it, my chances of also getting it increase dramatically.
As I understand it, Parkinson’s is a slow demise of the neuromuscular system from causes unknown, or at least poorly understood. A part of the brain stops producing the amino acid dopamine, thus inhibiting the nervous system’s ability to transmit signals. I have been issued dopamine pills which I take three times daily to supplement my system. Although I haven’t detected much of a change either way, my neurologist assures me that they will allow me to manage the symptoms for years to come. The problem is – sooner or later the pill regimen exhausts itself, and the effect goes away. At this point the sufferer dives into much deeper levels of the either drug-taking or the disease itself. The person begins to disappear down a tunnel.
I am often tired, unsteady, stiff and sore… but I’m also old, so there goes that excuse. Walking uphill is awkward because my body feels hunched forward and my feet seem to drive clumsily into the pavement before they should. But walking downhill is quite the opposite because my feet are flung out and down in front of me. It is rather liberating. Running, (or at least jogging) still feels pretty natural and if I wasn’t so out of shape - and if I could get beyond walking - I think I could run.
On a good day, which is most days, I can still pound the fuzz off a tennis ball and hike along the river with the dog. Other than the walking and occasional rogue twitches, I feel great. I have no desire to become a blithering Muhammed Ali, or a twitching, stammering Michael J. Fox. I hope to have the gumption to never let it go that far. In fact, chances remain that I may not have it at all… maybe someday I’ll go “whoops, never mind” and strike this blog from cyberspace.
But for now I’m getting used to living with it. It’s been a slap in the face with cold water that has been a bit refreshing in a way. As the English poet Samuel Johnson once remarked: “nothing focuses the mind like a hanging”. And as Mark Twain has been attributed to have added: “especially your own.”
But then, Twain gets a lot of credit for things he never said.