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.