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).

Things I no longer want to do

JON: I had an invitation recently to act as external examiner at a university back in the UK. My first reaction was to grab it with both hands as a sign that I can still do the sort of stuff I used to do. However, on more mature thought, and after some discussion, I decided to turn it down. Why?

1 When stressed I start to gibber, stammer and generally become hard to understand, even for those who know me well.

2 I absolutely NEED to take mid-morning and afternoon naps, or at least lie down for half an hour or so to recharge (a.k.a. let the drugs kick in).

3 If I under-dose, I slow right down and become unfit for any kind of purpose. I worry that the time change, though only one hour, could be enough to mess up my internal clock.

4 If I over-dose, I get slightly high – not a problem if I’m out being social, but hardly appropriate for an external examiner. It’s a serious responsibility to take on and should not be conducted by somebody whose poor tiny brain is liable to turn to custard every so often.

So I stayed home. And what did I do instead of examining eager young minds? Well, for many people Sunday is not so much a day of rest, but a day of DIY, and to me every day is a kind of Sunday. So do I engage in DIY? Pha! I find people’s claim that this is somehow “fun” quite absurd and possibly borderline pathological.

What we (and of course by that I mean Marie) did instead was hire a handy man for a day. He’s done a fine job, with Marie supervising. Which is something of a miracle, because whenever she and I attempt to do anything DIYish together it typically degenerates into World War III. I must admit it’s slightly emasculating to have someone else do your DIY – I used to be reasonably good at it (at least, when I put a shelf up it generally stayed up). But this way is soooo much better for our marriage and for my back.

Mind you, such good sense only prevails for a while. Marie was up in town for work the other day and I thought to surprise and delight her by stacking some of the vast quantity of firewood we’ve just had delivered. She was indeed delighted, and I suppose that goes some way towards a) re-masculating me and b) making up for my very sore muscles.

BREAKING NEWS
The Danish bureaucrats have pondered, pontificated and procrastinated and phinally decided that I am a person of sufficient worth and value that they will allow me to become a member of the Danish public. There are a few restrictions: I may not get to vote, rape or pillage, and I am to be force fed herring for breakfast, lunch and dinner until I can pronounce the Danish for ‘my postillion has been struck by lightning’. But these are tiny inconveniences compared to the great boon that is the possession of the magic CPR number that will now allow me to insure myself, open a bank account, get a doctor’s appointment and generally start living like I belong here.

Review

So how have I been doing lately, I hear you ask – don’t I?

Well, I still have problems getting off to sleep, and getting up in the mornings, so I’m not really myself until around 11:00 am. Or that’s my story. Marie’s is that if there is something I want to do or have to do, I’m up and functional within three quarters of an hour of taking my morning pills. I guess the discussion really is about what ‘functional’ means, but let’s leave that thorny little issue for another day.

My back ache is still there in the background (ha ha) which also affects my quality of sleep. I take a pain killer and have a lie down in the afternoon which helps some. I’m trying to get to a stage where I can stay awake and involved past 9:00 pm – it’s just so anti-social, but come 9 pm all I want is to climb into bed (I was going to say curl up in bed, but PD doesn’t allow curling).

There’s possible movement on the symptom front: Am I becoming more impulsive? Or merely more repulsive?

Well, we took the trip to Egypt at very short notice and I bought a new and rather expensive camera in duty-free, but the holiday had been talked about for months, and I’d been reading reviews of the camera for a long time, only waiting until I could see it in the flesh – which I did and promptly fell in love. And I have no regrets it a wonderful toy, and if I’m honest it’s also a bit of male jewelry, as in my lens is bigger than your lens.

About getting more repulsive...well, I used to the new camera to take macro pictures of my ear, which clearly show the parkinsonian ear wax (cerumen) that I produce by the kilo. Yeeech... I can’t say it has much of an impact on my quality of life, though sometimes I can hear the stuff rolling about inside my ear which is pretty horrid, and now I kind of wish I hadn’t taken the photos but could live on in happy ignorance of its appearance. It’s really very different from my pre-parkinsoniann ear wax. How do I know? Because I devoted several pages of my thesis to the fracture mechanics of (my) ear wax. Trust me, I’m a doctor.

Further on repulsiveness: I computed my BMI at 29.8 – just a few peanuts shy of obesity. My trousers are getting tighter, in a high-pitched-voice sort of way, or it could be a hernia developing. Anyway, Marie has decided it’s time for both of us to Make an Effort so the past week has been characterized by too much vegetarian food and too little pudding. I hate it when she’s right.

Lastly, the work–life balance. My book writing progresses slowly, and I’ve taken on the task of assisting in supervising an American PhD student who will visit our lab to do some work with the large intestine simulator (it’s a long story, and if you thought the ear wax was gross, well, this involves buckets of fermented poo). It’s an international collaboration: the student comes from the USA, the food samples are being prepared in Hong Kong, and we will use thin Dutch people’s poo and fat English people’s poo. Fascinating stuff, and it’s good to be involved. I’m also reading more, though nowhere near as much as I used to – the tiredness gets in the way, and even more so the back that makes it uncomfortable to sit in the same position for long, as one does when engrossed in a good book. Ho hum, you gets what you’re given.

Final interesting tidbit is news from my sister, who has persuaded BBC radio to do a 30 minute biographical programme about my father who was one the pioneers of computing at Manchester university in the 1950s. Cool, eh? So if there is any one out there with anecdotes or the like, get in touch.