I’m back on a plane headed east from Nevada. I am leaving piles of spent brass behind, but I’m taking a little more money home than I expected (about $11.50). I’m not a gambler, but for the first time, I played blackjack and left the table with more money than I sat down with (enough to pay for a sumptuous feast at the best restaurant in Pahrump, the Taco Bell). No offense intended to the fine residents of Pahrump, but where are you hiding the good food?
The last day of the course was low-key, and PD interfered more than on the first day. There have been some recent changes to my daily medication regimen driven by insurance company machinations – they no longer cover one of the drugs I’ve been taking for years and which worked well. It apparently saves everyone money if I take drugs that don’t work very well. You’re welcome.
At any rate, the timing of the drugs is even more important than it was in the past, and if I’m off schedule by as little as 10 to 15 minutes, mayhem ensues. My reminder alarm went off at the appropriate time, but I was on the firing line poking holes in paper, and I couldn’t be bothered to stop – I was on a roll, and you don’t just walk away from a streak (maybe that’s why I’m an unsuccessful gambler). By the time I finished my ‘slinging, I could tell I had made a tactical error, and retribution was coming.
I am prone to something called biphasic dyskinesia. Dyskinesia isn’t a Parkinson’s symptom; it’s a side effect of Parkinson’s medication, and gets worse the longer you have taken the meds. It looks like dancing or writhing movements, and it’s totally involuntary. For most PWPs, dyskinesia is worst at the peak of a medication dose, when the level of medicine in the bloodstream is at its highest, and maybe just a little too high. For some, however, including me, the dyskinesia is worst while the medication level is changing rapidly, either going up or going down. I’ve learned to time my medication dosages so that they remain somewhat steady during the day, and I’m only significantly dyskinetic first thing in the morning and late at night, when I’m either ramping up or ramping down.
The new drug, coupled with the heat in the Nevada desert (it felt like it was about 500 degrees yesterday, but it was only 96F) and my decision that “a little while longer won’t matter,” threw all my careful planning out the window, though. I took the collection of red capsules, yellow tablets, and pink pills about 20 minutes late, and I had already started to become dyskinetic.
Most of my fellow classmates did not know about my Parkinson’s. Sometimes I tell people, if there’s a reason; other times, it’s just an intrusion or the information doesn’t add value. I got a few strange looks when I began to dance to my own internal soundtrack, but no one was really concerned. They just thought I had gone weird on them.
The drugs didn’t take effect as quickly as they sometimes do, so instead of proceeding from dyskinesia to improvement as usual, I had an episode of tremoring. Tremor is not my main symptom, but over the years it’s gotten worse. With all the other stressors in place like the heat, the fatigue, the lack of medication, and a slight case of dehydration (although I had already drunk 4 liters of water, and it was only 12:30 PM), this episode was epic.
The instructors knew what was happening, but some of my new friends were concerned and thought I had heat stroke, regular stroke, epilepsy, St. Vitus’ Dance, or had suddenly become really scared and nervous.
I still find it interesting how differently people react when I tell them I have Parkinson’s. It’s noteworthy and sad how often they tell me about an aunt, uncle, cousin or parent who had PD – this thing impacts far too many people. Some have no idea what it is, and are interested. Some have no idea and are NOT interested. And some respond with, “Oh. Ohhhh…,” as if I had just told them I had an alien living inside my chest, but it wouldn’t be making an appearance until they were safely gone.
Occasionally, I meet someone else who has PD, and hasn’t to wrapped their head around the concept yet. That happened in Hawaii several years ago, while I was touring a sugar plantation. The receptionist was a nice, matronly 60-something Hawaiian lady who was taking tickets with her left hand, hiding her right hand in her lap with a classic PD pill-rolling tremor. I handed her my ticket, smiled, and said, “ I think we’ve got something in common.”
I don’t know if she thought I was hitting on her, but she guardedly said, “What?”
“I have Parkinson’s disease, too,“ I said.
It’s always a risk, because sometimes I’m wrong, and even if I’m right, people can perceive the comment as an invasion of privacy. I try not to offend, but sometimes it’s worth the risk.
“You do? You’re so young! My doctor just told me last week. and I’m scared,” she said. We talked for about an hour, and I think she felt better afterward. She, like many people, was burdened with misperceptions about PD, and her fear had filled the gaps in her knowledge. I felt better, too.
So, I’m careful about who I tell in person, and it backfires both ways sometimes. I was with a stalwart group of people, though – a medical center executive and former Marine who was attending his sixth class and planned to come back with his son in the fall, an emergency room doc who was with his two sons and several other friends, all of whom gave him ceaseless grief about his cute little 5-shot revolver, and others from all imaginable backgrounds. They were concerned but not frantic, and after determining that I wasn’t about to expire from some treatable or preventable malady, they checked on me occasionally and let me sit in the shade and watch.
After a little while I got back to the training, but had to sit out the last hour or so. Stiffness and clumsiness replaced the dyskinesia and tremor, and it was time to stop handling a gun for the day. Fourteen hours of training in the Nevada sun was plenty, though, and I had a blast and met great people.
I plan to go back (neither my brother nor my son have been yet, and that’s unacceptable), and if I have to sit in the shade occasionally and shake, it’s no big deal. When I can’t go back, there will be something else, and something else after that. And when the end of my time here finally comes, I hope I’ll meet it with no regrets, having lived well until the last moment, with memories full of family and friends, happiness, and hard times well-met, holding Amy’s hand, telling her, “See you shortly, honey.”
Because that’s when the real adventure begins.