Doing my scales

It’s been a while since I last posted, and in fact I am beginning to wonder if this blog is a good idea. It makes me somehow very self-centered and probably bores the pants off my readers (assuming that I have any – I’ve not dared to add a hit counter yet). These navel-gazing questions of how I (we) have been, are there any new symptoms, have I adjusted my medication / seen a doctor / had an insight – do I even want to think about it? There is such a thing as healthy denial, you know.

One day at a time, as they say, and on a day-to-day basis there are no changes, or the changes are too small to detect, i.e. falling below the threshold of the ‘just noticeable difference’. I wonder what the SI unit for that is? Marie suggests the St Peter after the statue of same in the Church of St Peter in Rome. Apparently, the devout all kiss or stroke one foot of this statue, and while of course you see no difference from day to day, if you take a perspective of years or decades the foot is clearly eroded by belief – to the point where Peter is now, as far as she knows, on his third extremity. For Parkinson’s, the St Peter could be based on twitches per day, or time to put socks on, or perhaps likelihood of getting to the phone before the answering machine kicks in.

This new unit seems to me an improvement over the current tool used by neurologists, the Hoen and Yahr scale which is just a five point scale for impairments physical, mental, occupational, social, etc. Here, a score of one equals very mild symptoms (a slight tremor, a little slowness) while a score of five denotes conditions you really don’t want to think about too much, involving wheelchairs, enemas and cognitive meltdown.

Talking of which: we played chess, I won a couple of games but I also managed to lose some by such ploys as taking my own pawns when I forgot whether I was black or white. Was this a symptom of ageing, fatigue, alcohol or the beginnings of something nastier? Who knows. Likewise, I got persuaded to contribute to the radio programme about my dad that I mentioned in an earlier blog. I gave a short interview about my work over the phone and to be honest I think I made a total balls of it, sprouting nonsense and non-sequiteurs all over the place. The interviewer claims he can edit it into something reasonable, and I say good luck to him.

As far as I am aware, there are no accurate tests, no machine to tell you that you are exactly 3.23 on the Parkinson’s scale and deteriorating by 0.14 per year. And if there were, would I want to use such a machine, or is (some) ignorance really bliss? It’s a slow and insidious process, and given that there is no cure and that treatment only gets less effective over time, what is the value of knowing?

Perhaps I would rather live as our cat who was born with a degenerative, incurable kidney disease and by now has hardly any normal kidney tissue or life expectancy left. But the cat doesn’t know that, and the disease has progressed slowly enough for him to adjust to the effects at every stage and continue to live an almost entirely normal cat life of playing, snoozing, looking cute and ruthlessly killing small furry animals. This seems to me a pretty ideal way of being terminally ill.

So I’m opting for a denial strategy. I’m fine if anyone asks, and if they really, really probe I think I’ll continue to claim that I’m fine, although I may add an ‘–ish’ to indicate this is rather less than the full story. For a while, then, I will leave this blog to Marie who claims to be bursting with things to write about. My ears are burning already...