I used to be a fidgeter, but not anymore. I used to toss and turn in bed at night, before and after falling asleep. Now, when I go to bed, I quickly find a position I’m comfortable in, and stay that way until morning. More than once, my wife says, she’s woken up in the middle of the night to find me so still she has to check that I’m still breathing.
This afternoon I visited our vacation cabin for the first time since last November. Our cabin sits in the woods on a dead end dirt road that in the winter is only partially plowed, up to and not far after my driveway. It’s always very quiet here, but never quieter than in late winter. There is literally no traffic on the road. When I got here today, it was cold out, and there was about a foot of snow on the ground. I had to park my car in the street and trudge through it to my front door. I opened up the cabin and found everything was how I left it. My deer hunting coat lay hanging on the same hook, the refrigerator remained unplugged with its doors propped open, blankets remained neatly folded on the beds. Everything was in its place. I started a fire in the wood stove and unloaded the things I’d packed and waited for the cabin to warm up.
This evening, I went out for a bite to eat and picked up a couple of things for breakfast and lunch tomorrow. When I came in out of the dark and cold, the fire was still burning in the stove, and the cabin was bright and warm and quiet. I started reading, but soon an “off” cycle hit me hard. “Off” cycles are when my Parkinson’s disease medications wear off, about every three and a half to four hours. When they hit, I take my prescribed dosage of Carbidopa / Levodopa and wait for it to kick in. Most of the time, the off periods aren’t too bad, it’s a discomfort that I’ve gotten used to. About twice a day, though, usually after I’ve eaten a full meal, they’re pretty rough, as the rigidity or stiffness that is my most prominent motor symptom makes movement of any kind very difficult and extremely uncomfortable, and if I’ve eaten a lot, they’re accompanied by severe nausea and acid reflux. I’ve learned to eat less at dinner time, for example, but sometimes it still hits me. About all I can do when these bad off periods occur is take my pill and find a place to sit or lie down and ride it out. Usually after an hour, longer during the really bad spells, I feel the pill kicking in and gradually start feeling better, and about an hour later, two to three hours after the off-period began, it’s over, and I’m good for about an hour and a half until the next off-period begins.
I was alone in my cabin when tonight’s bad spell hit. I took my pill and lay down on the couch and waited for it to kick in. As I laid there it occurred to me that I wasn’t moving, not a muscle, and I looked around the silent cabin and saw all the things that were in the same place I left them last November, all of them still and unmoving. I thought of myself, lying there among them, just as still, and I thought of how I often find myself in the morning, in the same position I fell asleep in several hours before, just like the things in the cabin that remained unmoved since last November.
I used to take comfort in the site of my cabin being unchanged from how I’d left it, but not anymore.
Now it terrifies me.