From One Perspective
by Christine Hall
“You can observe a lot by watching.”... Yogi Berra
From My Perspective
By Christine Hall ," Early to bed and early to rise, makes a man healthy, wealthy and wise. "
If this is true then I should be a whole lot smarter, richer and healthier than I am. There are days that I rise so early that I can't remember having gone to bed! Sleeping problems have plagued me for about five years now and two years ago, in an effort to help me achieve my goal of five full hours of sleep, my neurologist referred me to sleep clinic at Toronto Western hospital. As a result of that visit, I was invited back again last year and expect to be invited on a yearly basis from now on. There are two sleep clinics at this hospital, one a regular sleep clinic and the other a research clinic, where sleep studies are combined with various research studies. Since I volunteered to be a subject in one of these studies that's where I was sent. The grass always looks greener, but I think I might have made a mistake! What follows is my personal perspective regarding sleep studies. Keep in mind that I have a low tolerance for boredom and…., in fact I have a low tolerance for just about any irritant. However but I can assure you that a certain percentage of what you will read is absolutely true.
Like many hospitals, this one is under constant renovation. The research sleep clinic however remains untouched by modern-day building construction techniques. It does, however, get the benefit of the noise of the jackhammers. There's a certain charm to the 12 ft. ceilings and big windows, but that pales quickly as you realize that there is no working shower, one bathroom for the entire gang of sleepless wanderers, and one hospital cafeteria that must be located several miles from this floor. Check-in time is 8:00 p.m. and the routine stay is two days and two nights. By night you sleep (if you're lucky). By day, your time is interspersed by half-hour periods where you are instructed that you must either remain awake or that you must go to sleep. (One day is a sleep day, the next an awake day). During these times no external stimuli is permitted - nothing.
On my first visit to the sleep clinic, I got lost in downtown Toronto and drove around in circles for an hour
trying to find a spot where I could pull over so that I could ask someone where I was going. I arrived late and somewhat frazzled to find that my companions had already completed their paper work and were in the process of getting "hooked up". Hook-up takes approximately 30 minutes and leaves you looking somewhat sci-fi. About this 20 wires are stuck to various parts of your body using a Vaseline-like substance, which you’ll get out of your hair in about a week. The wires are all gathered together and a belt is put around your chest and another around your abdomen. You are then escorted to your plastic mattress where you are tethered to a computer hook-up beside the bed, some kind of measuring instrument is put up your nose and it's nighty-night. Forget about reading, writing or trying to kill some time. You are a captive of the wires and the monitoring machines. Heaven help the incontinent. You’re not going anywhere in a hurry. Sleep is the only way out of the boredom and eventually you drift off, only to wake and wonder what the heck is stopping you from moving around in bed. Sometimes if the technician is checking your spiking brain waves, she’ll poke her head in to ask why you’re awake (always said in a surprised tone of voice, like you’re a rarity!) If you cannot go back to sleep and look very meek and urine-filled, you can get yourself unhooked by about 5am. Unhooked does not mean removal of the wires- no, they are there for the duration- just the belts, nose thing and computer hook-up. Then you are free to wander the hospital carrying a bundle of wires and scaring the hell out of the early morning surgery patients. Last year I actually ventured out on the street in this becoming attire. Big mistake. Even the panhandlers left me alone.
The remainder of the day is spent in thirty-minute intervals of either “sleep” or “don’t sleep” cycles and filling in questionnaires after each of these. You are unwired at about 4pm. If there was a shower to get the gunk out of your hair, you could actually escape for a while but alas, it is not a possibility. You are left to your own devicesuntil 8 pm when the whole process starts again. This experience would rate really, really high on my list of the top ten most boring things I’ve done.
So why would I voluntarily subject myself to this annual torment? Well, it’s because all my complaints are
outweighed by the information I have received about my personal sleep patterns and sleep in general. I have learned that there is a “typical” Parkinson’s sleep pattern, which essentially seems to boil down to shallow intermittent sleep with not enough time spent in stage 4, which is your quality sleep time. All relates to changes in brain chemicals. Both times I was there I woke up over 50 times, not to the point of awareness, but statistically awake. I reached stage 4 too quickly and only stayed there for brief minutes. The overall quality of my sleep was rated as 53% - not good enough for quality daytime living and likely exacerbating my Parkinson’s symptoms. There was concern about apnoea (which I was told was likely related to Parkinson’s and would worsen as the disease progresses). I wondered why the technician had come charging in one night, waking me up to see if I was okay!! There was also concern about the possibility of daytime sleepiness and its repercussions for alertness activities, driving, etc.
The solution? There is not ideal solution. For me the best answer has been medication – lots of it. I don’t like taking the drugs but I do like getting five full hours of uninterrupted sleep and the way that makes me feel. I have consulted with doctors, done my research, weighed the odds and decided that right now, this is my best alternative. I keep going back in the hopes that research will find a better way than pills to fix sleep disturbances—like maybe a cure for Parkinson’s.
