It was late 1999.
For about a year I had been dropping things with my right hand. This was not just your garden-variety clumsiness, of which I have always been something of a poster child. I would have something in my right hand – a glass, a cassette tape, a butter knife. Then, suddenly, I wouldn’t have it. No tingling. No numbness. No warning. The hand would just “let go and let gravity.”
By itself, no big deal. Nor, when taken separately, was I particularly concerned about the cramping in my thighs when I climbed stairs, the fact that I was inexplicably exhausted by the end of the day, or the shaking in my right hand when excited or stressed.
The thing that tipped the scales was when I was doing the morning talk show at a radio station in Naples, Florida, when I couldn’t for the life of me remember the name of my co-host. We had been together for nearly four months. I called her by her first name at least three dozen times a day. She was my boss, for God’s sake. And with the microphone open and a good part of southwest Florida tuned in, I stammered and fumbled and tried for all I was worth to remember just what in the hell her name was.
But I couldn’t. So instead I grabbed a tape cartridge with a recorded public service announcement and told the audience we’d be taking a break. I dropped the tape right into the woman’s coffee cup – whatever her name was. I picked it up and dropped it again. My hand shook like a leaf in the wind. I struggled to put the tape into the player, and stabbed at the “start” button, missing it.
Nanci (that was her name! Nanci! How in the hell do you forget a name like Nanci?) pushed my trembling hand out of the way and pushed the button. I turned off the mic. She looked at me and her forehead creased the way it did when I had just said something on the air that she knew would be the focus of a meeting with the station manager after the show.
“Would you please call a doctor,” she said. The show was almost over so she offered to slide behind the control board and finish things off for the day. I went to my desk, pulling out my wallet as I walked. Once seated, I withdrew my insurance card and called the 800 number for “medical advice nurse.” The nice lady on the phone asked me to describe my situation. I told her what I had noticed before and what had just happened.
“Are you near a hospital?” she asked.
“Uh, yeah.”
“Go there,” she said. “Right now. I don’t want to alarm you, but what you are describing sounds like you might be in the early stages of a stroke.”
“Oh. Right. Nothing alarming about that,” I said.
“Don’t drive,” she said. “Call an ambulance.”
“Right,” I said. “Thank you.” I hung up and called my wife. She said she’d be right there to pick me up and take me to the ER. I was not going to be hauled out of the radio station on a gurney, down the hallway of the office building, into the elevator, out into the parking lot, a topic of conversation, a focus of entertainment above and beyond the call of my duties as morning radio show host.
I sat at my desk and wondered if I’d notice or recognize any of the subtle signs of approaching and imminent death. Not that I’m a melodramatic sort. But I did have some time to kill.
The first thing they did in the ER was take my blood pressure. It was fine. They did an EKG. It was fine. Off to the CT scanner. The images were normal. I was admitted for observation – which was an odd thing to call it, since to my knowledge no one “observed” me. I lay in my hospital bed feeling fine – somewhat hungry, but otherwise fit. I watched TV, and every couple hours or so, someone would take my blood pressure.
The next morning, a neurologist came to visit me.
“Good news,” he said. Those are the best two words a doctor can say. I smiled. “You didn’t have a stroke. You don’t have a tumor. But I think you do have a little something going on there.”
A “little something”, eh, I thought. Hell. I can deal with a “little” something.
“Do me a favor,” he said. “Get out of bed and walk up and down the hallway for me.”
“You’re the doctor,” I said. I got up, walked to the door, turned around and came back.
“One more time,” he said. I complied.
“Why aren’t you swinging your right arm?” he asked. I looked at my arm as I walked. It just kind of hung there. My left arm was moving back and forth, doing the work for both arms apparently.
“Damned if I know,” I said. The doctor patted the edge of the bed. I walked over – this time forcing my right arm to do its damn job – and sat.
He told me to open and close my right hand fast as I could. Then the left. Then tap my right index finger and thumb. Then the left. Then he told me to put my right palm on my thigh and turn it over, like flipping a burger, over and over, fast as I could. I did. Then he told me to do the same thing, but this time while opening and closing my left hand as fast as I could.
That’s when we came to a screeching halt. I couldn’t do it. Not smoothly, anyway. I could do one or the other. But doing both required massive concentration.
“OK, here’s the problem,” he said. “Like I said, you didn’t have a stroke, you don’t have a tumor. So, you don’t have anything that’s going to kill you. But I think you might have Parkinson’s Disease.”
“That’s nice,” I said. I knew a little bit about Parkinson’s Disease. Months earlier, actor Michael J. Fox had gone public with his own diagnosis. I admired him for doing so and marveled that one so young would have an old guy’s disease.
“I’m going to suggest you see a special kind of neurologist,” he said. “A movement disorder specialist. There’s a great one in Miami, Dr. William Koller. If you’d like, I can set up an appointment.”
I thanked him and explained that my insurance company required that I jump through their hoops before doing anything so drastic as seeing a specialist. I asked him to write down the doctor’s name and I would try to work the system with the ultimate end of seeing this Dr. Koller he spoke so highly of.
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 the news 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.
The next doctor told me I did not have ALS. We did all the testing I had done in the hospital room. Then he shut the door and sat down, leaning toward me with the air of a conspirator.
“What do you think it is?” he asked me.
“My money’s still on Parkinson’s Disease,” I said.
“That’s probably a good bet. But you know what? I’m an HMO doctor. And I’m going to be very honest with you. And if you repeat this to anyone, I will swear I never said it. OK?”
I assured him I was cool with it.
“I’m going to diagnose you with extrapyramidal syndrome. It’s a catch-all phrase for a variety of conditions, including Parkinson’s. If I pull the trigger on the PD diagnosis, it goes on my record. It’s an expensive diagnosis. And it’s the sort of thing the HMO looks at when they do the books at the end of the year. I don’t want it on my record. What I will do, is refer you to the Parkinson’s Disease Foundation clinic in Miami. We’ll let them pull the trigger. Any problem with that?”
Nope. Other than the corporate cowardice, I had no problem with that at all.
On January 30, 2000 I saw Dr. William Koller – the same doctor the neurologist at the ER in Naples wanted to send me to 90 days earlier. We did all the tests again. And he made the diagnosis.
“How do you feel about that?” he asked me.
“Beats Lou Gehrig’s Disease,” I said.
He smiled and patted me on the shoulder. “Remember, Bill… it’s not a death sentence. It’s a life sentence.”
So. My disease had a name.
But it wasn’t until early 2007 until I really began to take it seriously.
At first, I took a medication called Mirapex. It’s a so-called “dopamine agonist” which means it activates the dopamine receptors in the brain. So you’re not actually getting MORE dopamine, just more mileage out of the dopamine your brain already produces. It has some side effects. For one, it can make a person fall asleep without warning. And let me say that there are few things more unsettling that being woken up by the blaring car horns behind you because you’ve nodded off at a stop light. And then there’s the problem with hallucinations. Not the scary kind where you’re confronted by demons, monsters or your ex-wife’s mother wearing a thong bikini, but small, innocent little hallucinations, seen for an instant out of the corner of the mind’s eye. In my case, I was sitting at the computer when I noticed a movement off to my right. I turned just in time to see the back half of my cat dashing behind a cabinet. The only problem – I didn’t HAVE a cat. (My wife thought this was hilarious and dubbed the ghost cat “Spooky.”)
By the end of 2000 I started taking Sinemet CR – a controlled release mixture of levodopa (which the body converts into dopamine) and carbidopa (which keeps the body from metabolizing the levodopa in your stomach, allowing more of it to reach your brain, whis is the only way it can do you any good). The improvement was instantaneous. I felt wonderful! But it’s a double-edged sword. Sinemet can cause some pretty noticeable side effects – like the twisting, jerky motions known as dyskinesia. For instance, when you see Michael J. Fox on TV and he’s twisting and writhing and can’t sit still… that’s dyskinesia! It’s caused by the levodopa. No one knows why. But after years of levodopa use, that sweet spot between “control of symptoms” and dyskinesia gets smaller and smaller and sometimes disappears altogether. By early 2003 I was beginning to show signs of it – mostly in my right pinky. I’d be sitting there, comfortable, watching TV, and my pinky would twist and dance as if it wanted to separate from my hand… tear itself right off from the edge of my palm and crawl like an inchworm across the floor, out the door, onto the street, where it would no doubt be crushed by a passing truck.
In early 2003, after discussing it with my neurologist, I stopped drug therapy completely. My symptoms weren’t so severe that I wanted to expose myself to the increased onset of dyskinesia.
By 2005 I was working for the federal government and the HMO I elected for health coverage insisted that I stop seeing the movement disorder specialist I had been seeing to that point and start seeing an “in-house” neurologist.
The insurance company’s neurologist told me he didn’t think I had Parkinson's because I was much too young. He thought it was carpal tunnel syndrome.
When testing for carpal tunnel came back negative, he decided I had cervical spinal stenosis – a narrowing of the canal the spinal cord goes through in the neck.
I had an MRI and CT of the cervical spine, and yes, the spinal canal was narrower than it should be, but not so narrow as to cause the symptoms I was having.
So then he decided it must be some other condition I can’t even remember the name of and it doesn’t matter because I fired him during health insurance “open season” in 2006 and started seeing my previous movement disorder specialist. By this time I was walking very slowly, my whole body was stiff, and my balance was getting worse.
I had an appointment with her on February 1, 2007 and I related my frustration with the situation and the doctor I had been seeing the previous year. After doing the neurological tests she said, "With all due respect to your former neurologist, you DO seem to have Parkinson's Disease -- and a fairly classical case of it."
Yaaaay! I'm CLASSICAL!
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