I had a dream

JON (with apologies to Dr King and Wobbly Williams…): One of the better aspects of having Parkinson’s is that the drugs are fairly effective. Okay, I’ll never be an Olympic athlete, but if I take my 26 or so pills per day (yes, I rattle when I walk) then I am fairly functional most of the time.

At bedtime, I take a couple of Rivotril which work both as muscle relaxants against my leg cramps and, probably more importantly, are pretty effective against my REM sleep disorder. You may recall this from posts past, but to recap: during REM sleep, “normal” people’s brains switch off their bodies to only the eyes move when you dream – hence the name Rapid Eye Movement (REM) sleep. This switching off doesn’t always work if you have Parkinson’s.

What you get then is vivid dreams that you act out, with much loud talking, thrashing about in bed, and possibly sleep walking. I did all of this before I got on Rivotril. The dreams all followed a similar pattern, where I was protecting someone or something from a serious threat. Thus, I have been Obama’s body guard, have performed life saving surgery and been engaged in child protection. All important and rather stressful stuff, particularly in the middle of the night.

At least I have never attacked Marie in my sleep, though it is apparently fairly common for the REM sleep disorderly to have a go at their bed partners. On the other hand, always keen to take the path less traveled by, I incorporated extreme bed wetting into my routine – not of the incontinent variety, mind you, but where I would get out of bed, carefully position myself and then treat the mattress as a urinal. The wet would eventually wake me and I would then slink off and wake Marie so she could deal with the mess. Not a happy time for either of us.

However, this is all a few years back (it’s taken a while to get ready to talk about it). I still occasionally get vivid dreams, but instead of acting them out I now wake up, go for a wee (in the right place) and then back to my own bed – which is mine alone as I twitch and snore and need the full width of the double bed to turn over at night, so sharing isn’t really a sane option any more. Last night was a bit different, though, in that instead of waking up properly I went into Marie’s bedroom. And the conversation went as follows:

Jon: We have to talk.
Marie: What about?
Jon: Don’t be alarmed, but I really think we have to let the slaves go
Marie: What slaves?

It was only at this point that I woke and realized I’d been dreaming. Since there seemed very little point in continuing the conversation, I just went back to bed (though I did check under the bed and can confidently state that our house is entirely slave free).

The Feminist revolution: a nightmare?

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.

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.