JON: Everything seemed to be going in the right direction, I was beginning to see the first tender green shoots of several trite metaphors, etc. But then I had to go and do the obligatory sick man’s shuffle of one step forward and two steps back.
Marie and I were away from home for a few nights and were forced to share a bed – which is allowed, we’re married with bits of paper and joint bank accounts and everything. But to return to the point: as is my wont I went to bed early, about 9:30, took my pills and was asleep within minutes. Mare came later at a more grown-up time.
Some time later, in the small wee hours of the night, I woke Marie by shaking her vigorously and lecturing her loudly on how she should join the feminist revolution. Several well-placed kicks from Marie calmed me down – until I was at it again, this time demanding equal rights to education for women. This time, though, I woke myself up to and I can distinctly remember saying out loud: “OH SHIT, it’s just Discworld, isn’t it” (which, for the uneducated / un-medicated amongst you, means Terry Pratchett’s series of comic fantasy/SF, with 60 million books sold so far).
The rest of the night was blissfully un-eventful for Marie, although I was kept awake (I thought) by noises off. “So“, I hear you ask, “is that an auditory hallucination or are you just pleased to hear me?” Well, some of it just sounded like someone walking around upstairs – but I should point out that we were in a bungalow. Spooky.
The whole experience felt like a return to the bad old days of constant sleepwalking and scary night-time hallucinations which I thought I’d put behind me when I came off Sifrol over a year ago. So why did it happen again, and why now? It’s possible that I missed one of my nightly muscle relaxants, but when I have missed one before I have just stayed awake, not gone under and acted out my dreams. Or is it quite simply that we disturb eachother so much that it has become physically impossible for us to share a bed (for the purpose of sleep, at least)? The worst-possible-case scenario is that the Ritalin, which does me so much good during the day, is beginning to cause problems at night.
So the next night I experimented by not taking my muscle relaxant, which caused the usual insomniac misery (although much less shouting). So it wasn’t a missed pill. Nor has there been any recurrence (that we know of) since we came home to each our separate beds, which there should probably have been if it was the Ritalin playing up. So it was most likely just the situation that caused it. Not great, but that at least we can live with and work around.
And back in Flatland under the thumbs of my many and varied health professionals, my neurologist treated me to an interpretation of the results of my sleep clinic registration (see the post of 24 January 2010). The results, not very helpfully, were inconclusive: it might be REM sleep disorder, and then again it might not. What the tests did show was considerable activity in various muscle groups during sleep, particularly in my muscles of mastication. Better known as bruxing, this is so common it's almost normal.
In a nutshell: I have slightly disturbed sleep, REM sleep disorder in quite common in Parkinson’s, I have Parkinson’s, so my disturbed sleep is probably caused by REM sleep disorder. The most common treatment is more of the muscle relaxants I’m already taking, so we’ll go with that for now.
One good point is that the neurologist explained that although REM-SD and PD are related in occurrence, they are not necessarily related in severity. Which means that as the PD gets worse, the REM-SD may well stay exactly the same. I am also pleased that the sleep clinic didn’t diagnose some other, unrelated unpleasantness such as obstructive sleep apnoea which I was rather worried they might leap on. So I guess that although I am unfit for work, I am at least reasonably fit to go to sleep.
Showing posts with label sleep registration. Show all posts
Showing posts with label sleep registration. Show all posts
26 February 2010
30 December 2009
Cold (s)naps
JON: Nothing new on Ritalin yet – possibly my prescription is stuck in the Xmas mail. The sooner it gets here the better. Meanwhile:
Xmas week thick snow covered most of northern Europe and our out-door thermometer recorded a low of –11 C – and that’s without taking into account the wind chill factor. I know this for a fact since I was made to walk around in it.
And that’s it, really, in terms of holiday activity. As often before, Marie and I have ignored Christmas. Okay, we ate and drank well, and were even moderately merry, but I am very pleased to say that there were no decorations, gifts, crackers or silly hats. Some good books, a number of icy walks, much cooking (on Marie’s part) and a fair bit of napping (on my part). Pretty good. I am planning for a repeat over the New Year’s break.
And I have, for once, deserved a break, because earlier this month I was quite the jet setter, flying first to Nottingham (on my own!) to give a lecture and then to Leeds with Marie to see the kids and grandkids, all of whom are wonderful, intelligent, beautiful and charming (though I may perhaps be slightly prejudiced).
The visit to Nottingham went well. I stayed with a friend, and we talked much of teeth, food and ‘the good old times’. Happily, the lecture I was there to give went OK too. I’ve shown this material before and thought I had the timing down to a T, with a number of loops and possible exit points to adjust the length, so my running slow was not too problematic. Near the end I lost it, though, and found myself staring at the screen in bewilderment before admitting that ‘I’m sorry, I haven’t a clue what this slide shows – let’s just move on…’
But I got interesting questions, no-one fell asleep, and I got taken out for what might have been a rather fine meal had I not spent so much time talking that when we finally arrived at the restaurant the chef had gone home. However, they served beer and peanuts so not all was lost.
Giving the lecture was, I think, less stressful than the one I gave last year, This I suspect was mainly due to the timing. Last time my 9am lecture involved a 5am start so I could get my body in gear, i.e. have sufficient time to enter my ON state, whereas this time we planned the lecture so that I would give it during my normal ON period.
Medical bulletin: Hot news is that I have a new appointment (at last) to have my sleep patterns recorded at a special hospital clinic. We tried this last year and it was an utter disaster. I was laboriously wired up to a 32 channel EEG – looked like a porcupine gone very wrong with cables super-glued to head, chest and limbs. Marie left the clinic at about 8:00 pm, I fell asleep at 08:01 pm and immediately ripped the electrodes off my head – very painful if you are awake, quite painless if asleep. By this time the night shift had come on and nobody knew how to replace the electrodes. Which kind of confirmed that I had a sleep disorder... This time it should be less dramatic, as I’m told I just twitch a bit when I’m in dreaming. Well, I twitch when I’m awake, don’t I, but we’ve been down that road. OK, I also jerk about and talk quite loudly in my sleep, which I admit is a bit anti-social. We’ll soon see what the doctors think.
Xmas week thick snow covered most of northern Europe and our out-door thermometer recorded a low of –11 C – and that’s without taking into account the wind chill factor. I know this for a fact since I was made to walk around in it.
And that’s it, really, in terms of holiday activity. As often before, Marie and I have ignored Christmas. Okay, we ate and drank well, and were even moderately merry, but I am very pleased to say that there were no decorations, gifts, crackers or silly hats. Some good books, a number of icy walks, much cooking (on Marie’s part) and a fair bit of napping (on my part). Pretty good. I am planning for a repeat over the New Year’s break.
And I have, for once, deserved a break, because earlier this month I was quite the jet setter, flying first to Nottingham (on my own!) to give a lecture and then to Leeds with Marie to see the kids and grandkids, all of whom are wonderful, intelligent, beautiful and charming (though I may perhaps be slightly prejudiced).
The visit to Nottingham went well. I stayed with a friend, and we talked much of teeth, food and ‘the good old times’. Happily, the lecture I was there to give went OK too. I’ve shown this material before and thought I had the timing down to a T, with a number of loops and possible exit points to adjust the length, so my running slow was not too problematic. Near the end I lost it, though, and found myself staring at the screen in bewilderment before admitting that ‘I’m sorry, I haven’t a clue what this slide shows – let’s just move on…’
But I got interesting questions, no-one fell asleep, and I got taken out for what might have been a rather fine meal had I not spent so much time talking that when we finally arrived at the restaurant the chef had gone home. However, they served beer and peanuts so not all was lost.
Giving the lecture was, I think, less stressful than the one I gave last year, This I suspect was mainly due to the timing. Last time my 9am lecture involved a 5am start so I could get my body in gear, i.e. have sufficient time to enter my ON state, whereas this time we planned the lecture so that I would give it during my normal ON period.
Medical bulletin: Hot news is that I have a new appointment (at last) to have my sleep patterns recorded at a special hospital clinic. We tried this last year and it was an utter disaster. I was laboriously wired up to a 32 channel EEG – looked like a porcupine gone very wrong with cables super-glued to head, chest and limbs. Marie left the clinic at about 8:00 pm, I fell asleep at 08:01 pm and immediately ripped the electrodes off my head – very painful if you are awake, quite painless if asleep. By this time the night shift had come on and nobody knew how to replace the electrodes. Which kind of confirmed that I had a sleep disorder... This time it should be less dramatic, as I’m told I just twitch a bit when I’m in dreaming. Well, I twitch when I’m awake, don’t I, but we’ve been down that road. OK, I also jerk about and talk quite loudly in my sleep, which I admit is a bit anti-social. We’ll soon see what the doctors think.
12 October 2008
A good moan
Hello, it’s Marie again. We promised in one of the early blogs to give a bit of background to what came before the blog started. Since this has been a praticularly horrid week, we thought I should take the opportunity to give you a whistle-stop tour of our private Hades, taking it up to date with the latest set-back.
When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.
First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).
When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.
This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.
We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.
There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.
And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.
This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.
When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.
First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).
When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.
This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.
We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.
There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.
And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.
This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.
Subscribe to:
Posts (Atom)
