To sleep, perchance to dream
– and to record it all on a computer. I have just been back to the sleep clinic for my second appointment (the first was two years ago). A sleep clinic is a place where they superglue numerous sensors, electrodes and other devices to you to measure overnight heart rate, respiration, brain activity, temperature, movement, twitching and probably much else besides. To finish it off, they fit you with a really sexy bathcap-type arrangement made of gauze, which ends in a long ponytail of cables. It took about an hour to get me fully wired.
The purpose, of course, is to determine if there is anything wrong with your sleep that medical science can help with. In my case, we suspect REM sleep behaviour disorder (quite common in Parkinson’s), which gives intensely vivid (and often disturbing) dreams and which short circuits the mechanism that normally stops you from acting out your dreams. In my case, I mainly talk very loudly in my sleep and tend to jerk about a lot when I dream, but in bad cases people can attack the bed partners and/or hurt themselves. Needless to say, this doesn’t make for restful nights.
Last time I was at the clinic I was suffering from side effects of the dopamine agonist Sifrol I was taking at the time – a real nightmare that had me sleep walking, hallucinating, falling down and generally in a serious mess. In the clinic, I insisted Marie put me to bed about 8 pm, whereupon she went home. Five minutes later I was asleep, and one minute after that I ripped off half the electrodes. By this time, of course, the technicians on the day shift had gone home, and the night shift did not know how to reattach the sensors. So I waited for Marie to get home (it’s a 45 minute drive) and then called to ask her to come and collect me. We finally got home around midnight. For me to be able to rip the electrodes off was a fairly dramatic indication that I had a sleep problem – those people have good quality superglue so ripping all that stuff off HURTS!
Fast forward two years to the present day and I’m feeling significantly better but not 100% “fixed” in terms of my sleep problems. I need to take a slow release Sinemet (L-dopa) tablet before bedtime plus the muscle relaxant Rivotril to have a chance of a decent night The snag is that although I am blissfully unaware of it myself, I still fidget and jerk and kick and shout (and snore). Marie had to move out of my bed many months ago.
So I’m back in the sleep clinic for a second attempt at measuring what actually goes on in my head and body when I’m asleep. This time, they ask me to make do without the muscle relaxant, which is a pretty miserable experience. I toss and turn, then at 3:45 take an unscheduled pain pill for my back. I sleep fitfully until I wake up at 7:15, shortly before the nurse/technician comes to rip the electrodes from my rather delicate skin. I bite my lips and attempt to look brave, not that this cuts much ice with the staff, but I think I might have Marie fooled. I am assured that they got the measurements they were hoping for, and I will have the results explained to me at the next appointment with my neurologist in just under a month. I am such a patient patient.
In other news:
My tricycle has been approved by the local authority so now I am just waiting to take possession (on indefinite loan). Delivery may take many weeks, though, but since it’s hardly weather for biking I can’t say I mind.
And I now have my prescription for Ritalin – we all await the results with interest, particularly since this is the first time the psychologist/psychiatrist combo has used the drug on someone with Parkinson’s. So I’m a guinea pig for this off-label use, i.e. to provide purpose and instil the will to “do” into Parkinsonian lives. They have good experiences with stroke victims, apparently…anyhow, watch this space.
Further, I have had my evaluation with the driving neurologist. No news yet to say whether I can just renew my licence, have to take a fresh driving test, or will be banned from driving forthwith. It’s fingers-crossed-time, though I’m not feeling too worried as I think the evaluation went quite well.
Lastly, I’m also crossing fingers, toes and assorted other appendages for next week’s appointment with the pension doctor who will assess my level of disability, which in turn will determine the size of my pre-retirement age pension. I’m told the examination will take an hour, and that I shouldn’t worry about it, but this is significantly easier said than done. Marie and I both obsess some about our preparations as this really is very critical to our quality of life for the next decade. I won’t say “wish me luck”, but please wish me an informed and intelligent doctor!
The purpose, of course, is to determine if there is anything wrong with your sleep that medical science can help with. In my case, we suspect REM sleep behaviour disorder (quite common in Parkinson’s), which gives intensely vivid (and often disturbing) dreams and which short circuits the mechanism that normally stops you from acting out your dreams. In my case, I mainly talk very loudly in my sleep and tend to jerk about a lot when I dream, but in bad cases people can attack the bed partners and/or hurt themselves. Needless to say, this doesn’t make for restful nights.
Last time I was at the clinic I was suffering from side effects of the dopamine agonist Sifrol I was taking at the time – a real nightmare that had me sleep walking, hallucinating, falling down and generally in a serious mess. In the clinic, I insisted Marie put me to bed about 8 pm, whereupon she went home. Five minutes later I was asleep, and one minute after that I ripped off half the electrodes. By this time, of course, the technicians on the day shift had gone home, and the night shift did not know how to reattach the sensors. So I waited for Marie to get home (it’s a 45 minute drive) and then called to ask her to come and collect me. We finally got home around midnight. For me to be able to rip the electrodes off was a fairly dramatic indication that I had a sleep problem – those people have good quality superglue so ripping all that stuff off HURTS!
Fast forward two years to the present day and I’m feeling significantly better but not 100% “fixed” in terms of my sleep problems. I need to take a slow release Sinemet (L-dopa) tablet before bedtime plus the muscle relaxant Rivotril to have a chance of a decent night The snag is that although I am blissfully unaware of it myself, I still fidget and jerk and kick and shout (and snore). Marie had to move out of my bed many months ago.
So I’m back in the sleep clinic for a second attempt at measuring what actually goes on in my head and body when I’m asleep. This time, they ask me to make do without the muscle relaxant, which is a pretty miserable experience. I toss and turn, then at 3:45 take an unscheduled pain pill for my back. I sleep fitfully until I wake up at 7:15, shortly before the nurse/technician comes to rip the electrodes from my rather delicate skin. I bite my lips and attempt to look brave, not that this cuts much ice with the staff, but I think I might have Marie fooled. I am assured that they got the measurements they were hoping for, and I will have the results explained to me at the next appointment with my neurologist in just under a month. I am such a patient patient.
In other news:
My tricycle has been approved by the local authority so now I am just waiting to take possession (on indefinite loan). Delivery may take many weeks, though, but since it’s hardly weather for biking I can’t say I mind.
And I now have my prescription for Ritalin – we all await the results with interest, particularly since this is the first time the psychologist/psychiatrist combo has used the drug on someone with Parkinson’s. So I’m a guinea pig for this off-label use, i.e. to provide purpose and instil the will to “do” into Parkinsonian lives. They have good experiences with stroke victims, apparently…anyhow, watch this space.
Further, I have had my evaluation with the driving neurologist. No news yet to say whether I can just renew my licence, have to take a fresh driving test, or will be banned from driving forthwith. It’s fingers-crossed-time, though I’m not feeling too worried as I think the evaluation went quite well.
Lastly, I’m also crossing fingers, toes and assorted other appendages for next week’s appointment with the pension doctor who will assess my level of disability, which in turn will determine the size of my pre-retirement age pension. I’m told the examination will take an hour, and that I shouldn’t worry about it, but this is significantly easier said than done. Marie and I both obsess some about our preparations as this really is very critical to our quality of life for the next decade. I won’t say “wish me luck”, but please wish me an informed and intelligent doctor!
1 comment:
you kind of look like an odd santa in this photo. My hubby was taken off of Sifrol years ago. That seemed to help with cutting down on the amount of wild ride in our beds.
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