Parkinson's Disease: Not Kharma...Khemistry!

Parkinson's disease personal stories
Bill Schmalfeldt was diagnosed with Parkinson’s disease at the tender age of 45 back in 2000.
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A guy didn’t make much money hauling hay bales on the Bornemann farm. A nickel per bale got divided three ways, and by the time the week was over if you had a few bucks you considered yourself lucky. That wasn’t the point of the job anyway. The real purpose was to build up arm strength before football season. The little bit of money you got was just icing on the cake.

Oh, yeah. I forgot to mention the cake. A thick, two-layer yellow cake with vanilla frosting waited for dessert. We may have been working for slave wages. But we ate like lords.

“Boys. Get you some chicken meat,” Mrs. Bornemann said with a smile. She was a round, jolly woman with a large head covered in white curls. She loved to watch teenage boys eat. “Put some gravy on them ‘taters,” she commanded, gravy boat in hand, smothering the potatoes on my plate with rich, creamy goodness.

Mr. Bornemann ate in silence. He rarely spoke, and when he did it was usually to yell at us for lollygagging, meaning we weren’t getting the bales from the field to the flatbed behind his trailer nearly fast enough.

“Get you some more chicken meat,” Mrs. Bornemann said as I gnawed a drumstick to the cartilage. “Best meat’s on the breast,” she said and I wondered why such a grandmotherly woman had no kids of her own.

That question would be answered by a quick glance at her husband. A grim, thin man with a pointed nose and crooked neck, his eyes were small, set and mean. Sparse white hair covered the crest of his small head like an early winter snow flurry atop a grain silo. His tiny mouth was set in a concrete frown. He didn’t look like he had a drop of blood to spare for something so frivolous as making love to a woman when there were CHORES to be done and CROPS to be raised and a HERD to take care of. Dammit.

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.

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.

Some years later, I began to understand the concept of Karma.

I do not have Parkinson’s disease because I made fun of an old man and his shaking palsy.

I got Parkinson’s disease because a bunch of cells in a portion of my brain known as the substantia nigra (Latin for “black stuff”) whose only job is to produce a neurotransmitting chemical called dopamine have decided, for whatever reason, to die. We don’t know what killed them – as the popular bumper sticker of the late 1990s put it – stuff happens.

I suppose it was in the late 1990s when stuff started happening to ME! In late 1999, to be specific... 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.”

 “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.”

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.

“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.”

I saw two other doctors. Both were neurologists. The first thought I had Lou Gehrig’s disease. The second thought it might be Parkinson’s, but he wasn’t willing to pull the trigger on the diagnosis. He did, however, refer me to the National Parkinson Foundation clinic in Miami.

On January 31, 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.”

Still, it was now official. A doctor—a preeminent one in the world of movement disorders—had just diagnosed me with Parkinson’s disease.

He gave me a sampler pack of Mirapex and a prescription for more when I got home. My eyes focused on the road, I couldn’t even hear the music on the radio.

“Parkinson’s disease. Well, it’s official.”

Dr. Koller explained that it was very early in the disease process and that I likely had a number of “good years” ahead of me. How many? “No way to say for sure. It’s different for everyone.”

As the Everglades whizzed by on the left and right of the car, I did a survey of my current symptoms. The cramping, the dropping of stuff with my right hand, the occasional difficulty finding the right word. I tried to think ahead, wondering what the future would be like for me. Surely they’d find a cure for this thing by the time I would be disabled by it, right? Dr. Koller sure seemed optimistic about it. I mean, all this new stuff with embryonic stem cell research and all... whoever wins the 2000 election will SURELY allow federal funding to continue and they’ll HAVE to have a cure for this thing five years from now, ten at the outside...

At the end of January 2012, it will be 12 years.

Twelve years. A lot has been done. Not as much as I had hoped. But at the time, I didn’t even know what to think about it all.

Zipping across Alligator Alley, Parkinson’s was a concept. A thing I knew that I had. But I had no idea.

No idea.

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