Well, here it is. My final book. At least, for now. If anything else particularly word-worthy happens between now and whenever, you can read about it here on the blog. If I get enough really, really interesting blog entries put together before I wind up staggering after imaginary butterflies down the hallway of some nice and safe place where they will keep me warm and safe and protected… maybe there will be another book.
But this is my last effort for now. This book comprises my entire history with Parkinson’s disease… from my first remembered experience with it in 1972, through the struggle to find a diagnosis, through the nonchalant years where having Parkinson’s was the same thing for me as being bald, through the changes of 2006-7 when my symptoms got worse, through the deep brain stimulation clinical trial and the subsequent “droolfests,” through the continued decline of 2008 and 2009, to reaching the point in late 2010 where I’m filing for disability retirement.
No family drama. No overt political viewpoints. Just stuff about my life as a guy with Parkinson’s and the other crap that annoys me.
How is this book different from other books written by other people with Parkinson’s?
Beats me. I tried to read one someone gave me as a gift one time, years ago, but I couldn’t get through it. It depressed the hell out of me. The last thing I wanted to write was a “So I close in saying that I may have had a tough break, but I have an awful lot to live for…” kind of book. I didn’t want to thank God for the blessing of Parkinson’s disease so that, through my suffering, I might better understand the suffering of others. I didn’t want to write about flowers and lollipops and unicorns and how every cloud has a silver lining.
I wanted to write a funny book. And there are times, gentle reader, when this fucking disease is funnier than a Three Stooges Marathon. (Right now, I can hear my Mom saying, “The Three Stooges aren’t funny.” But let’s ignore her.)
When a doctor tells you that you’re too young to have Parkinson’s but it might be ‘s disease… and it turns out to be Parkinson’s? That’s funny!
When your neurosurgeon, up to both fists in your brain, sends a text message to your wife in the waiting room that says, “Mrs. Schmalfeldt, you will be happy to know that we opened two holes in your husband’s head and found brain in BOTH of them,” THAT’s funny!
When a big, OR tech who looks like he would be more at home wearing a football jersey with the number “98″ on it approaches you with a catheter and tells you to “think pleasant thoughts,” THAT’s funny!
When, after , your post-op nurse is wheeling you down for a and you engage in conversation with a police officer and the nurse tells the cop, “Go easy on him, officer. He’s already had his brain picked enough today,” THAT’s funny!
When your wife threatens in one breath to wrap you in bubble wrap, and in the next breath suggests using a cattle prod when you freeze while walking, THAT’s funny!
So… I wrote a funny book.
And, in places, it’s an angry book.
I’m angry about the eight years wasted during the when federal funding for was outlawed.
I’m angry about religious hypocrites who worry more about the rights of frozen cells in a petrie dish that will NEVER become babies than they are about my ability to walk without freezing or falling.
I’m angry that, because as a nation we don’t like thinking about or looking at old people, we don’t have a serious effort to raise awareness about Parkinson’s disease.
But mostly, I think it’s been a very funny joke. That’s what I mean to convey with this book. I want that message to be read by the person newly diagnosed with Parkinson’s disease, someone who has had it for awhile, someone who has a loved one with the disease, or someone who is thinking about approaching a neurologist to see what’s been causing that odd twitch in his right hand. I want my words… the words of someone who has known about his disease for nearly 11 years (but had symptoms for at least two years before the diagnosis)… to comfort and to confront. To let you know that although it’s a progressive disease, it isn’t fatal. And to confront YOU to confront OTHERS with your disease.
, God love him, hid his disease for nine years. I told my radio listeners the day after I got the diagnosis. I volunteered for brain surgery because what they learn might help someone down the road. When I die, my body all of it is being donated to science.
So if you have Parkinson’s or know and love someone who has, read my book and find a similar experience you’ve had and smile about it. If you don’t have it, read the book and see why YOU should dig into your pocket and help fund the research that might MIGHT keep you or someone YOU love from getting it.
But, most of all, just read the book and learn something. Parkinson’s is not “a Russian novel” like that idiot in the movie “Love and Other Drugs” tells the character, saying that if he knew then what he knows now about the disease, he would have run from his fiance like a rabbit. Parkinson’s is a “” silent movie comedy. You know what’s going to happen. But hopefully, you’ll get some laughs along the way.
Buy my book. 100 percent of the proceeds go to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt.