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6 Strange Things People Call My Disease (Instead of Its Name)

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Exactly one and a half years ago, I was diagnosed with Parkinson’s disease. It was one of the worst days of my life. My oldest friend was burying his father, my dad had collapsed and was in a hospital “being stabilized” — whatever that meant — and I found out I had Parkinson’s disease.

What is Parkinson’s Disease?

I noticed the tremor in my left hand six months earlier. I have played drums for a long time, but I struggled to do a roll. Then, I was jogging and my left hand started shaking. It would also shake a bit while it was resting on the gear lever in the car. At 55, I thought I was too young for any such rubbish and shrugged it off. (Of course, later I would find out that Michael J. Fox was only 30 when he was diagnosed.) I thought I’d hid it from everyone as well as myself. Eventually, my wife asked me, “So, what’s going on with your hand?”

And so I was diagnosed and started the long process of emotionally dealing with being at war with my own body. Socially, I became quieter and more self-conscious. I felt physically different. I used to feel loose and louche and fun; now I felt old and vulnerable. It’s an extremely mild case. I walked the Inca Trail to Machu Picchu this year, so I am doing better than OK.

It took me a long time to start telling people. I would get a bit emotional talking about it. Eventually, I became more comfortable with wheeling it out there. It was something I really wanted to do as I am a “full disclosure” kind of guy (some would say an “over-sharer” in this buttoned-down world of ours).

I told my family, people at work, friends, neighbors, the bus driver and anyone who asked, “How’s it going?” It was good to get it off my chest. Then I noticed that most people never asked about it, and the ones who did rarely mentioned the word “Parkinson’s.” I found this really surprising and somewhat disconcerting. My disease had become like Voldemort — we could never speak its name.

So dear readers, here is my list of the strange things that people call my “condition.”

1. “Your condition”

This is said with a pause, like they are walking through a minefield and being careful where they step. “So by the way. Um. How’s… you know… uh… your condition?”

2. “It”

As in “How’s it going?” said with similar unease as number one.

3. “The hand”

As in, “How’s the hand?” It’s fine, thank you. The rest of me is doing well, too.

4. “The rest of you”

Yep, they were looking to see if it’s spreading like an infection.

5. “How’s it shakin’?”

Ah, the blessed relief of humor. It’s like a summer shower.

6. “The thing”

Yes, it was described that way. Like it was the hand of the guy in “District 9” as he turned into an alien. Like it was now a little monster. The person asking even looked at it nervously like it was leprosy. A personal favorite.

Mark on a hike

Follow this journey on Mister Bongo.

Originally published: January 9, 2016
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