Troubles small and large

The trouble with Parkinson’s is that it throws up such a large array of attacks on one’s abilities and self-esteem, some attacks tiny and annoying like those of gnats, some large and painful like African killer bees, with a few really serious rattlesnakes thrown in for 'good' measure.

In the gnat-department, I have developed a skin rash on my upper lip and around my nostrils. It looks like an ultra-bad attack of moustache-dandruff, and both books and neurologist inform me this is not unusual as an effect of PD. I have been attacking it first with normal dandruff shampoo, using an old toothbrush to scrape away at the deposits. That was getting a bit painful, though, and wasn’t having any long-term effect. So now that my official holidays have started, I have shaved off the moustache entirely and purchased the hardest-hitting anti-dandruff cream available without prescription. I now walk around with a semi-permanent cream-moustache, with an understory of my own re-growth that I hope will be reasonably established by the time I have to go back to work. It is a small indignity, but one of many. (Marie claims it is like having an affair with a bald-lipped man …)

The killer bee department, meanwhile, weighs in with a new owie: severe neck stiffness to add to my back pain. Almost any movement of my head or trunk hurts – sometimes just a little, sometimes a whole lot. It is as if muscles that have been OFF and just slightly bothersome suddenly switch ON to great and unpleasant effect. I’m still on prescription pain relief, weekly physiotherapy sessions, daily walks to loosen up the joints, and I have an array of aids such as my bag of microwaveable cherry pips for warmth, a DIY sander that Marie buzzes my back with at regular intervals (to the great detriment of my T-shirts, but so what), and a TENS system that applies electricity direct to the muscles. All of which provide fleeting or temporary relief only. Although my neurologist seems to disagree (though does not say so outright), I think it is the PD causing my neck and back muscles to go wild, but when I mentioned this to my GP a few days ago, all I got back was commiserations (‘oh, that must be nasty’ kind of comment). To be fair, though, he had just referred me to the hospital pain clinic, so what more could he do – refer me twice? I have been to this pain clinic before. First they made my life a living hell after a spinal injection, then they rescued me from the brink of despair by coming up with the first effective pain medication I'd had in a year. It will be interesting to see what they suggest this time.

At least I am still doing okay with my insomnia. That is to say, it is still there, but without the sleeping pills and antidepressants I was taking against the insomnia, I am now sleeping a little less but making a lot more sense. No way do I want to go back to those scary nights (and days) of drug-induced weirdness. Instead, I have prescribed for myself a largish drink to be taken when (not if) I wake in the middle of the night and have trouble getting back to sleep. It kind of works, and since Marie and I are by now almost tee-total during normal drinking hours, I don’t think it will hurt me.

And in the rattlesnake department lives the elephant in the corner (with an extended family of mixed metaphors). This elephant is pink, and answers to the ugly name of cognitive impairment. As I have mentioned before, I do not feel up to my old mental standards, for instance finding it harder to complete work tasks that used to be a matter of course. Is this Parkinson’s, or sleep deprivation, or normal aging? Marie and I have been studiously avoiding the subject until recently, and it’s been playing some havoc with our interaction. Basically, we have both been unusually quick to anger, which has served to mask the fear we both have but that is much more painful to articulate, that I may no longer be quite the intellectual giant I was. But this weekend at last we talked, and decided that what we need is an expert opinion – about whether I am actually impaired (could we have made the whole thing up?), if so what might be the cause, and what can be done about it. We were supposed to see my neurologist next in two months’ time, but have now moved the appoint up so we are going next week. In the meantime, I’ll try to stuff this particular elephant very firmly back into its cage.