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It was just about three weeks after my 45th birthday in 2000 when It was diagnosed with Parkinson’s disease. In 2007 while working at a federal agency as a writer and podcaster, telling other people about the importance of clinical trials, I heard about and volunteered for an experimental brain surgery to determine whether or not “deep brain stimulation” could be done on patients in the earlier stages of the disease. The purpose of the clinical trial is to prove that DBS, when done earlier in the progression of the disease, might just slow down or stop the degeneration that is an inevitable part of the disease. This is the story of my “Parkinson’s Decade” from being diagnosed in 2000, to having the surgery in 2007, through today. The story is told in a humorous, satirical, almost jovial first-person, conversational style. It’s a book that should be on the reading list of anyone who has (or loves someone who has) Parkinson’s disease.
Read about my first experience with an older fella with Parkinson’s and what a jerk I was.
There was another thing about him, too. He shook. I thought at first it was because of that ramshackle tractor he rode all day up and down, around and between the neat rows of evenly spaced alfalfa bales. But he shook even when the tractor was still and silent. His head and neck twitched and craned as if he were always trying to get a better look at something. His right arm seemed to have a mind of its own, as if it were trying to break free from its disagreeable owner and find a more hospitable, friendlier body with which to cleave. The only way he could drink his coffee was to hold the cup on the table top with both hands, dip his face down to the cup, and slurp.
He caught me watching him.
“Tend to your business!” he barked. I fixed my gaze on the half-eaten chicken breast on my plate.
“Eat some of these ‘taters,” Mrs. Bornemann said as she dropped a generous dollop of the spuds onto my brother’s plate.
“And you, Henry, stop barking at the boys.”
“I’ll bark at who I wanna,” he muttered as he dipped his face back to the coffee cup. Bob and Eric regarded me, smiling the way boys smile when someone’s in trouble and it’s not them.
Mr. Bornemann picked up his napkin and I noticed that when he used his hand, it didn’t shake. He dabbed at his lips and dropped the napkin back onto the table as his hand resumed its back and forth rhythm. He glared at Eric.
“You, boy. You said you can drive a tractor? When you’re done, the three of you get back to where we left off. I’m gonna lay down awhile. No lollygagging.”
But without him there to keep an eye on us, lollygag we did and how! As Eric drove the tractor, I grabbed bales and pitched them onto the flatbed at Bob who stacked them. And we laughed and laughed as we mocked Mr. Bornemann’s voice, his appearance, his attitude, and mostly – his affliction.
“I wonder if he taught his dog to shake,” I said. Bob laughed.
“That chicken we had today, ya think it was ‘Shake ‘n Bake’?” Eric guffawed and almost drove the tractor into a row of bales as he looked back.
“Betcha five bucks it was,” he said. “Wanna shake on it?”
We laughed and laughed and laughed. The job only lasted a couple weeks more, but our fun at the expense of Mr. Bornemann’s neurological condition lasted all summer.
Read about the difficulties a younger person faced in getting a Parkinson’s disease diagnosis in 2000:
My insurance company said I had to first see my family doctor. There was a problem with that. I didn’t have a family doctor. My insurance didn’t go into effect until three months after employment, which was just a month ago, and I hadn’t needed a doctor until then.
But bureaucracy must be honored, so after being discharged from the hospital I scanned the insurance company’s preferred provider list and picked out a family practitioner. I called for an appointment.
“And what is this appointment for,” the appointment clerk asked.
“So I can see a neurologist,” I explained.
“The doctor isn’t a neurologist,” she said patiently.
“I know that,” I said. “But I need him to give me a referral to see a neurologist.”
“How do you know you need to see a neurologist if you haven’t even seen a family practitioner yet,” she asked, that sweet
“I’m talking to an idiot” tone in her voice.
I explained my situation and she set the appointment for a couple days later.
The doctor sat and listened as I described the events of the past several days. Then he shook his head. “I don’t think it’s Parkinson’s,” he said. “You’re too young for that.”
“You would think so,” I said. “But look at Michael J. Fox…”
“Who’s he?” the doctor asked.
“Alex P. Keaton on ‘Family Ties’. ‘Back to the Future’…”
“Oh yeah,” he said, the light of recognition finally burning. “That guy. But that has to be a rare case. Did seeing that on thenews make you think you had PD too?”
“I thought I was having a stroke,” I told him. “The neurologist at the hospital said he thought I had PD.”
“Nah, you’re too young,” he said. But he agreed – at my insistence – to refer me to a neurologist.
A couple weeks later, the neurologist told me I was too young to have PD. He tested my reflexes, noticed some twitching in my calves and some hyper reflexes in my Achilles tendons.
“I don’t think it’s Parkinson’s,” he said in a thick accent – Maybe Middle Eastern, I’m not sure. “But you might want to prepare yourself for the possibility that you may have Lou Gehrig’s disease.”
Oh! Fine! A fatal disease! MUCH better than Parkinson’s, I thought. I told him I wanted a second opinion. We set up an appointment with one of his colleagues.
Read about how I got involved with a clinical trial to see if deep brain stimulation in early Parkinson’s disease could be done safely. I take you into the operating room with me as I remain awake for the 7 hour operation.
I kept up the banter, talking about things I don’t recall at present. It was important for the success of the surgery that I be placed in as comfortable a position as possible. And they were able to do this quite simply. Imagine being in a large lounge chair aside a swimming pool for hours. My neck was fully supported, they put pillows under my knees, foam pads under my heels, and foam rests under the entire length of each arm. Then Dr. Konrad said it was time to numb up my skull. I had been expecting to be sedated for this portion, but wasn’t feeling the effects yet. “This is going to feel like giant hornet’s stinging,” Dr. K said. And he wasn’t far off. After a few very painful injections, I began to feel the sedation… don’t know what caused the delay. But it didn’t seem to hurt quite as badly after the sedation started running in.
I didn’t feel it at all when they pulled out the staples over the bone markers, nor did I feel it when they cut two four inch lateral incisions into the top of my head. I was good and groggy when they drilled holes into my skull. Dr. K made a point of explaining that the driver on the drill was set to cut off instantly when there was no further resistance from skull – thereby avoiding the damage that could have been done to the covering of my brain. And darned if it didn’t cut off the instant it was supposed to. I felt the vibration through my entire skull, and smelled the kind of “burned bone” smell one might recall from drilling at a dentist’s.
And read about my mixed results through today:
Gail is getting used to finishing sentences for me. When I’m calm and relaxed, the words come out pretty smoothly. When I’m stressed, I sound like Porky Pig. It seems like my primary effort these days is keeping my lungs and windpipe clear of phlegm. My chest muscles hurt, and the constant throat-clearing is driving Gail nuts And I’m noticing mental changes.
Work proceeds apace. There are busy days and there are slow days. When things are slow, I try to work ahead. When things are really slow, I write. I have no idea how long I have until things progress to the point where I’ll have to retire, but I fear it will be sooner rather than later. As I’ve mentioned, most folks 10 years after being diagnosed don’t work anymore. But most folks are diagnosed later than I was. As long as I can still type, I suppose I can still work.
Parkinson’s disease is a capricious bitch. It treats all its victims differently There’s no way to say with any certainty how it will progress. The first seven years were smooth. The last three, especially following the DBS surgery (but not BECAUSE of it, I don’t think) have been rough.
But I’m still here. To quote someone much wiser than I, “I may have Parkinson’s, but it doesn’t have me.”
It’s a hopeful, but realistic telling of what it’s like for a middle-aged person to suffer from a degenerative neurological disorder.
EVERY DIME I MAKE FROM THIS BOOK IS BEING DONATED TO THE NATIONAL PARKINSON FOUNDATION AND THE CHARLES DBS RESEARCH FUND AT VANDERBILT UNIVERSITY.
NO DOORWAY WIDE ENOUGH IS AVAILABLE AT BOOKS O’BILLY, Also at:
Createspace.com — 466 page paperback — $20 ($9.56 donation)
Amazon.com — 466 paperback — $20 ($5.66 donation)
Smashwords.com — in all downloadable eBook formats — $5
Show your support for a cure. Purchase a copy TODAY!
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