From Diagnosis to Denial: My Parkinson's Odyssey By Joel Havemann
Let's be clear about one thing from the beginning: Parkinson's disease stinks. It stinks for the million Americans who have to deal with its insidious symptoms, from tremor to dementia. And it stinks for the countless others who have to spend most of their waking hours caring for them.
It's done me no favors either, although it hasn't hit me over the head with a 2-by-4. I have the most "benign" form of Parkinson's, the one in which tremor is the dominant symptom. It progresses most slowly and is easiest to treat. I was diagnosed a good 20 years ago, on Feb. 5, 1990. But my slow-moving version of Parkinson's, teamed with an understanding family, sympathetic employers and terrific medical care, have kept me on track.
This isn't to say that Parkinson's hasn't affected me from head to toe. A bunch of relatively petty ailments, related to Parkinson's, have sent me during the last 12 months to three neurologists, a neurosurgeon, a sleep doctor, a foot doctor, a shoulder doctor, a hernia doctor (well, that one may not have anything to do with Parkinson's), a swallowing doctor, a speech therapist, and a balance therapist.
Why am I telling you all this? Because the Parkinson's Action Network's Chief Executive Officer, Amy Comstock Rick, asked me to write a regular column for PAN's Web site. You'll have to ask Mrs. Rick why, out of a million Parkinson's patients nationwide who are eligible for the job, PAN chose me. Maybe those 999,990 of you who don't already know me can get some clues if you know how I got here.
I worked for newspapers in Portland (Ore.) and Chicago before coming to Washington for a reporting job at National Journal, a weekly that told you more than you wanted to know about government policy but charged so much ($200 a year in 1973) that you felt obliged to read it. I moved 10 years later to the Los Angeles Times Washington bureau and, seven years after that, heard the words that I didn't want to hear: "Parkinson's disease."
"Medicine should control the disease for many years," the diagnosing neurologist, Dr. Stephen Reich, told me, "and there's more in the pipeline."
Unconvinced, I blubbered, "But what will I be like when I'm 60?" (I was 46 at the time.).
"That I can't say," admitted Dr.Reich, never very good at white lies.
Well, now I'm 66, and while I'm a long way from perfect, I'm better off than I could have imagined in 1990. I've never quite known how to answer those medical questionnaires that ask you to grade your overall health on a scale from excellent to rotten. Apart from Parkinson's I feel fine, but it's sort of like asking Mrs. Lincoln if she liked the play. At D-Day (diagnosis day) plus 20 years, I'm in a lot better shape than many of my comrades who are still at D-Day plus 10 or 15. I've been extremely lucky; sometimes I think unfairly so. It's like survivor's guilt-but I admit that I'd rather feel guilty than be disabled.
It's not as if I can do everything I once could. My handwriting is so bad that even I can't read one word in ten, and that's a real handicap when you're in the business I was in. My typing is inaccurate; I'd guess that I make a mistake with every five or ten key strokes (I makea mistake with eevery five orten key stojes.). I walk awkwardly and have to remind myself to take long, heel-first strides. I speak softly and sometimes slur my words. If I hit a golf ball squarely, it's an accident. I get tired easily. Etc., etc., etc.
It seems to me that I've been pretty diligent about taking care of myself. I belong to a support group that meets twice a month. I go to group speech therapy once a week where, among other things, I sing (even though I had refused to sing ever since my fourth-grade teacher said I was so bad that I had to take the speaking parts).
The best thing I did was get deep brain stimulation (DBS) surgery. Actually, it's a misnomer-the electrical apparatus installed in the brain inhibits rather than stimulates a part of the brain that is overactive in Parkinson's, causing tremor and other movement disorders. My tremor was growing out of control shortly into the new millennium.
Along came DBS, a French export. For my surgery I went all the way to the Cleveland Clinic, where the surgeon Dr. Ali Rezai (he's since moved to Ohio State) had the reputation-well deserved, as far as I could tell-of being the best. I can now get a glass of water to my mouth without spilling half of it, and I can remain seated for hours at a time without getting so stiff that I pop out of the chair like a kangaroo.
I'll let people drill holes in my head and poke around my brain. But there are certain steps I won't take. I won't join an exercise group. It seems to me that a guy who raises three kids gets plenty of exercise, and when the twins went off to college seven years ago and left our nest empty, I made do with such activities as mowing a big, sloping lawn with a hand mower. So far, I've escaped the dance class that many of my fellow support group members swear by but that would no doubt expose me as an even worse dancer than singer.
What I really don't want to do is let Parkinson's take over my life. I'm sure it wouldn't take much effort to fill every day with activities-support groups, exercise classes, yoga and crossword puzzles, to name a few-to make my life a little more comfortable. But to what end? I don't just want to exist, I want to do.
Two decades from my diagnosis, I'm still in denial. This disease will not disable me or kill me. The strategy worked for 20 years, and I'm ready to try it for another 20.