Pinball man

MARIE: Before you even think to ask: no, we still don’t know when Jon will get the Duodopa pump, but we’re getting impatient. I guess I’ll have to call the hospital next week – we have decided that our patience officially runs out on the 1 of September.

Since Jon got offered the pump almost three months ago (see, we have been pretty good about waiting), his hyperkinesias have got quite a bit worse, and now he suspects he may have had his first Parkinsonian fall. We expect both these problems to get a lot better with the pump, which will even out drug delivery and which can be much more finely controlled than pills.

The hyperkinesias, which are incessant involuntary movements, are a side effect of the L-dopa. Basically, Jon now has hardly any window of “normality” between too little medication (when he is slow and frozen) and too much (when he gets hyperkinetic). It’s thoroughly miserable being under-medicated, whereas being over-medicated is like being a little bit high. Guess what he prefers.

So once the drugs have kicked in sometime before midday, Jon spends the rest of the day in constant movement. He never sits entirely still, he’s always tapping a foot and nodding his head and gently gyrating from side to side on his chair. Standing up is worse, he weaves and ducks (like fellow Parky Muhammad Ali before PD) and his head wobbles like one of those dashboard toys. Sometimes its so dizzy-making, I have to grasp his face in my hands to keep it still while we’re talking – I pretend I do it to be affectionate, but we both know the real reason. At its worst, walking from one end of the house to another is a game of pinball as Jon spins and bounces off the furniture, walls and door frames.

A bonus problem is that Jon draws a great deal of attention now. It used to be that his walking stick was enough to indicate to people that he had leg issues rather than a drink issue. But now the hyperkinesias affect much more than merely his balance, I have again noticed people staring – or almost worse: very deliberately not staring – at him and wondering how it’s possible to be that drunk that early.

I’m not sure Jon’s suspected fall was caused by the hyperkinesias, it could equally well be a direct symptom of PD. Balance is very often affected, and if you move slowly you may not have time to reach out and stop the fall. Also, he fell backwards, which is very characteristic of Parky falls. At least it wasn’t dramatic. He had knelt down to take a photo of my Dahlias (or what’s left of the after the ravages of snails and slugs), and from a squatting position gently tumbled backwards to find himself “turned turtle” on the lawn, camera pointing at clear blue skies. It would be very funny, if it wasn’t also quite sad.

Learning curves

JON: As you may recall, we moved to Denmark with the theory that I was still capable of learning a new language at my advanced age. At first I went go to a government-funded language school, a fine institution with what claims to be an efficient method for teaching the young and able-minded amongst us. However, it is perhaps not quite such a good method for the somewhat more elderly, and definitely not a lot of use for anyone with a degenerative brain disorder which is slowly turning his grey matter to custard. I have often said that if at first you don’t succeed – just give up. I took my own sage advice and gradually dropped out of language school.

But although my “just say no” approach to failure works OK in general, I admit that it’s also nice to succeed once in a while. An aside: who is most likely to succeed? A toothless budgerigar (succeed/suck seed). It’s a dentist joke – my–o-my but we had fun whilst chiseling wisdom teeth out of jaws.

Anyway. Then we had a brain wave (well, when I say “we”, I mainly mean my thinking-brain dog, a glossy-haired bitch called Marie). What I needed was a group of people who would talk to me in Danish v-e-r-y - s-l-o-w-l-y and preferably also have a limited vocabulary. Who answers to that description? Old folks, that’s who. So I started going to the Oak House day centre for the slightly demented twice a week.

At first this was perhaps a less than perfect solution. Of the other eight or ten old guys and gals there, only two spoke a form of English, but not as she is spoke in Blighty - more pidgin, or perhaps swan. However, their English was vastly superior to my Danish, so it would be churlish to complain.

However, I recently changed the days I go there from Mondays and Fridays to Tuesdays and Thursdays. And with that change came a whole different bunch of people, so things started to perk up rather pleasantly. Here was fresh meat, or at least several new blokes, to practice my Danish on. One guy in particular speaks near-perfect English. On our first meeting, he told fascinating tales of international derring-do and seemed to be an all-round good guy, so much so that on my first day I had to wonder why he was an ‘inmate’ of the day centre. It didn’t take long to work out what the problem was, though: he has the memory capacity a concussed bee or, for the more technical of my readers, a Sinclair ZX80. So although his stories are interesting, they have a tendency to repeat on you over and over again. Fortunately, my memory is not that great either these days, so I don’t mind the repetition too much.

Now, if I could only get them to serve proper food at lunch instead of all this foreign muck…