Numbers

JON: This week it was my birthday – for the 59th time! The only bright spark is that at least it’s not 69. In fact, a recent article in the New Scientist about the popularity of various numbers said 42 was most people’s favourite number (presumably courtesy of The Hitchhiker’s Guide to the Galaxy where ‘42’ features as the answer to the meaning of life, the universe and everything). ‘69’ came second favourite, probably because the rude connotations appeal to small boys of all ages and genders.

I’ve been working for days on turning my 59th birthday into a good rude joke involving the number 69, but I’m stuck. In fact, I used to enjoy swapping jokes and banter with people, and I think I was funny (at least to highly intelligent native speakers of English, and occasionally to Marie). However, I think I have become unable to tell jokes properly. I find myself delivering the punch line first, miss out essential parts of the joke, rarely manage quick banter – and I just don’t think I’m that funny anymore.

Why? I suspect two factors: progression of the PDD, and / or the lack of an audience. The people I hang with at the Oak House may be incredibly funny, but how would I know without speaking Danish? But I doubt it, they generally seem like a fairly dull bunch. Places like this are known as ‘Gods waiting rooms’, i.e. places where we go and wait to die (another potential joke lurks in a mispronouncing ‘to-die’ to sound like ‘today’ – ho ho ho, aren’t I the witty one?).

I think I’m beginning to settle in at the Oak House, though. I’ve formed a plan together with one of the regulars to produce some artwork to decorate a large wall in the kitchen with a new molten wax technique (well, new to me, anyway). I think I’ll enjoy that.

I have also been made a guide to the Oak House for a potential new ‘inmate’. As I may have mentioned, Marie attends every meeting relating to Parkinson’s or dementia in a 100 km radius. At one, she met a nice couple from the next village. The wife is ‘normal’, the husband has early-onset dementia. Somehow I’ve agreed baby-sit at his first visit to the Oak House, show him around and make him feel comfortable. A bonus is that he has lived for many years in Britain so is potentially someone easy for me to talk to.

He was inducted during our pre-Easter celebrations, a day starting with enormous pastries to celebrate my birthday, followed by an excessive lunch with beer and schnaps. At home waited the promise of a birthday dinner consisting of a HUGE steak, a small amount of salad, and as much apple crumble and custard as I could possibly eat.

I’m told many Parkies go off their food because all the drugs can give you nausea, but that has happily not happened to me (yet?). But I do regularly increase my intake of red meat by viciously biting my cheeks. PD has got to be at fault there somehow, though I’m not at all sure if anything can be done about it.

Taking stock

In the long term we are all dead. Another safe prediction is that tomorrow is very likely to be much the same as today, so in the short term we seem to be OK – it’s the medium term we need to watch out for. As progressive neurological diseases go, PD is less nasty than some: not fatal of itself, but not a recipe for a bright future either.

A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.

I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.

(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)

Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).

So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?

In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?

Home alone

Here I thought we were getting along rather well, and then Marie ups and leaves me. Okay, it was a work trip and only for a few days, but what’s a bloke to do? Pine, panic or procrastinate? Anyway, she left me with steaks to fry, English goodies to eat, and instructions for all emergencies and eventualities. The goodies are never quite as good as the mind imagines (NEVER let on I said that), but at least they are plentiful, and the cat enjoys sharing them with me.

But bugger it, I miss her. She’s supposed to be here to jolly me along and pester me into doing things, and to rub my aching back and bolster my flagging mood, and to help me tie shoelaces and put on belts and find keys – and also to hug me and hold me. Anyway, I soldier on. Strange pains go unreported (not to be mentioned at work, as who knows if they are still waiting to pounce and push me out), insomnia goes unacknowledged (okay, the cat knows I’m up at 4am, but is supremely unsympathetic), odd sleeping/waking dreams are not retold and laughed at (I hate it when she does that, but miss it when she doesn’t).

I avoid going out over the weekend. I feel I am beginning to twitch, and though I realize this is probably not visible to others, it feels so obvious to me I can’t believe nobody would notice. My speech is also affected, with a dry mouth and rough throat not helping any – I have been given a referral to see a speech therapist, and I realize I should not put it off much longer. I’ll tell you about it when I’ve pulled myself together and been for an appointment.

Anyway, the big question is: has Marie left me with enough food? You would think so, but I have an impressive appetite these days (it must be the pills). I root around and find various hidden treasures – the ginger nuts secreted for some dark and rhubarby purpose, a forgotten scrabble game made of bad chocolate, the microwave popcorn put away as insurance in case of nuclear winter. I could of course pick as much fresh veg as I like in the garden, but I’m a man for whom VEG means ‘Von Ebner’s glands’ (tiny things to do with saliva).

We never used to call each other every day from trips away, but now Marie calls daily and we talk for much longer than we used to when I was well and she would call only once or twice in a week away. Of course, the unspoken issue for both of us is: am I at risk of doing something stupid or dangerous, forgetting to feed the cat or setting fire to the house, or will I go psycho with lack of sleep and hurt myself? Of course not, no way – but as the Parkinson’s progresses, I can feel myself becoming more careful and timid, avoiding what I fear might be risky situations. Since when was I like that? How dare this disease take away my carelessly accident-prone self?