Parkinson's Disease -
Challenges and Encouragement
Tuesday, August 17, 2010
Turning the light off, I slid the pocket-door that led to the next room open a crack and peered with one eye into the darkness. I saw nothing but black as I waited for my temporary night-blindness to dissolve, having forgotten to accustom my eyes to the darkness before engaging on the mission. The door had made the slightest of scraping sounds despite my great care in moving it only an inch or less. There was a rustling sound in the room, like someone or something scurrying for cover. I froze, fearful I had been seen even if I could not see. Perfectly still, I waited and wondered. What should I do next? But the noise stopped even as my staring eye gained sight. The objects in the room slowly became outlines and shadows as the cloud-covered moon strained to penetrate through the horizontal blinds. Although shut tight, moonlight leaked through in fine lines into the room, like it does under a closed door. “What was that?” I whispered to myself. I stopped breathing even as I heard the steady exhaling and inhaling coming from a dark shape curled up in a low pen in the middle of the room. I dared go no further. I was afraid to let my breath out until managing to squeeze the door shut.
I stood alone in the dark for long minutes before quietly retreating, leaving my almost-two-year-old grandson, PJ, sleeping soundly in his playpen. With the excuse of checking on him I had just wanted a glimpse of his totally untroubled sleep. It was an uninterrupted sublime state he would enjoy for a full 10 hours; waking up refreshed and ready for another day of eating and playing, endlessly reciting “drive Gampa’s bike”, napping and enjoying being the centre of everyone’s attention before collapsing into the slumber of innocence again.
Would that I could sleep like that again. It has been over 12 years since I have slept through the night. Perhaps it was one of the earliest signs of my Parkinson’s disease, seven years before diagnosis. 50 to 60% of people with Parkinson's suffer from some form of insomnia. I have what is called "fragmented insomnia" having become accustomed to waking up 3 or 4 times a night for no apparent reason. I can be found wandering down to my den at 3 in the morning to answer e-mails, make a small dent in the "read when there is nothing better to do" pile (there always seems to be something better to do), or writing a sentence or two of a blog idea. Of course, I then spend a significant part of the next day in a fog, yawning and wondering how to catch a nap. It is quite remarkable how fast you can fall asleep almost anywhere when you are sleep-starved.
Why were we made to need sleep? It seems such a waste of time when there is so much to do. As Edgar Allan Poe said, "Sleep... Oh! how I loathe those little slices of death." But insomniacs will tell you that they desperately miss "wasting time" with more shut-eye. Sometimes it leads to desperate behavior, like sleeping in the underground parkade in your car, or pulling over on a side street to catch a catnap, hoping no one thinks that you died there.
Watching PJ as he slept that night reminded me of how vulnerable we are when asleep. Would we sleep if we did not have to? Surely, we would be too afraid to risk it. Bad things can happen to you while your eyes are closed and senses dimmed, defenses down as minds retreat to some faraway imaginary land. If this were not a natural restorative state we would likely have laws against it for fear that, if indulged in to excess it would result in unproductive members of society.
But alas, I remember my mother's bedtime salutation, "Sleep tight, and do not let the bed bugs bite". I always wondered what that meant. "Tight" did not sound like a comfortable way to sleep. And more than once I found myself wide awake wondering how big "bed bugs" actually were. Of course, now I do "sleep tight", often waking with muscles clenched and no idea how they got that way. At least I do not need to fear bedbugs. Thankfully they rarely make it into Canada, and do not survive long in our climate if they do.
Maybe I am alone in all of this. For as F. Scott Fitzgerald said, "It appears that every man's insomnia is as different from his neighbour's as are their daytime hopes and aspirations."
Diagnosed with Parkinson's Disease in 2006, I was 53. I currently serve as the President of Trinity Western University, of which I am an alumnus. I remain engaged as a lawyer who practices as general counsel to a wide variety of clients, primarily in the Vancouver region of British Columbia, Canada.
Married for 40+ years (to the same loving and long-suffering woman), with 3 grown children, and one grandson. Besides my wife and family, my passion is living the adventure called life as a God-given gift, which includes motorcycle riding, scuba-diving, blogging, Scrabble and looking for the treasure hidden in each day.