Parkinson’s Ninja

By Teresa Swartz Roberts

Blog post 18. Copyright 2017

            When I was little and fell asleep at some relative’s house, I would wake up in a bed piled up with brothers, cousins, and kids I wasn’t sure were cousins. I knew that at some point, I had simply toppled over while sitting on the floor playing Mousetrap, and some adult had carried me to a bed. Sometimes I’d wake up still on the floor under the coffee table.

            At home, Mother would use her fingers to brush my bangs back from my forehead, and I would fall right to sleep. My husband knows that, to this day, he can calm me down or put me to sleep by running a hand from my forehead into my hairline.

            I remember the digital clock I got as a high school graduation present that chirped like a bird when the alarm went off. My mother would charge into my room and say, “I hear a little birdie,” and her sing-song voice, which I miss so much now, would be as unwelcome as the chirping alarm.

            Sometimes she would take a quieter approach, gently shaking me awake until I blinked at her. I think those were my favorite mornings. I would keep my eyes closed for a moment to stretch the shaking, which sometimes evolved into her rubbing my back, a sure way to put me right back to sleep.

            Quiet wasn’t usually Mother’s style in the morning, though. She would have been up for hours banging around in the kitchen, doing a day’s work before I even turned over. After I had gotten married and moved away, on a visit I could count on hearing pots and pans and dishes being tossed around in Mother’s kitchen for at least an hour before I had to get out of bed in what used to be my bedroom.

            So, I fell asleep pretty easily, and I slept until I had a good reason to wake up. Not so much now. Part of that is being in my 50s, and part of that is having Parkinson’s Disease. What happens between going to bed and getting up has been amplified, too.

            I’ve always been a kicker. My brothers and those cousins who were unlucky enough to be carried to the same bed I was can attest to that. Now Parkinson’s has given me restless legs, and I move all night long. I sleep in a full-size bed, so I am able to roll over instead of having to turn over. It’s quite a process to settle in, especially when my muscles don’t remember what to do.

            I have a bipap machine now, basically a breathing machine that keeps my breaths even throughout the night because I snore. Loud. With my breathing mask on, I don’t snore, but sometimes the mask comes loose and makes a sound like a duck quacking.

Now, in addition to kicking and quacking, I, like many Parkinson’s patients, sometimes act out my dreams.

            Now, in addition to kicking and quacking, I, like many Parkinson’s patients, sometimes act out my dreams. I have complete conversations out loud. I go through everyday motions like putting dishes away– in bed, not actually sleepwalking. When I get up and go to the bathroom a few times a night, while I’m up, I stretch my legs and back because they need it. I’m awake for a while.

            You might say, and this is a really bad pun, that Parkinson’s has made me a mover and a shaker even when I’m asleep. Frank and I don’t sleep in the same bed anymore, but we share our bedroom. I respect his sleep and soon after we were married learned to stop using the snooze button and stop dropping the lid over my electric curlers because the intermittent clicking would drive My Honey crazy.

            I’m down to about six hours of sleep a night. Parkinson’s–or maybe my meds–can give me the urge to nod off occasionally during the day or evening if I let myself relax, so maybe I’m making up some of my sleep time with micro-naps. Anyway, when I go to bed after Frank does, get up in the middle of the night, and wake up when it’s not yet time, I try to be a Ninja. I’m an awkward Ninja. Nevertheless, I switch to stealth mode, holding the doorknob until the door latches silently, setting my shoes carefully under the bench at the foot of the bed instead of dropping them on the floor. By the time I’ve rolled to a comfortable position and clicked on my bi-pap, I’ve disturbed Frank, but he never complains.

            In the morning, I appreciate the increasing glow in our bedroom and listen to real birds chirping above the sound of the fan we use for white noise. I wake up before Frank’s alarm sounds, and I begin my meditative stretching and strength exercises there in bed, dozing between sets. Then sometimes a tremor will start in my back or leg. And I will feel my mother’s hand on my shoulder, shaking me awake. My dreams are so vivid that her touch is real. I am glad to have had another night, and I am ready for another day.