Profit and loss

This blog regularly talks about losses – of function, of work, of certainties, etc. – but Parkinson’s also gives back in some round-about ways. There is this general idea that bad things also bring some good because their victims gain a new and better perspective on life, generally involving a greater presence in the moment and an enhanced appreciation of the small pleasures of daily life. At two extremes:

From the blog PD and me (www.not-likely.co.uk/blog)
‘I can live with the PD, it makes me realise everything I have to be grateful for. It took me a long time to accept my PD but it has made me realise I have so much that I should be grateful for and that we often take life way too seriously, my PD has grounded me with a bump and made me look around and take stock of things and I'm glad its happened.’

From the book C – because cowards get cancer too by John Diamond who chronicled his treatment and deterioration from the oral cancer that ended up killing him:
'I have learned a lot about myself in nine months, and a lot about those around me. Much of that knowledge is useful, liberating even. Equally much of it is banal stuff which I should have known anyway had I bothered to think about it. But the bad has outweighed the good a millionfold … It shouldn’t be like this. That I can face the fact that it is like this is, I suppose, something. But what a bloody meagre something it is.'

Jon and I fit somewhere on that great continuum from someone who has embraced his incurable disease to someone who rails against a disease that has a very good cure rate (only not in his particular case). The disease has enabled us to spend much more time together, which on most days we would count as a good thing. And it has most certainly refocused us towards the here and now.

We cannot know how Jon’s particular instance of the disease will progress, all we can know is that it will indeed progress. So we try not to put good things off until next year, until tomorrow, until after we’ve done the laundry. It doesn’t always work – it is, after all, quite useful to have clean socks – but is certainly very different from before PD. Likewise, I think we take more pleasure from the things Jon can do, mainly in terms of physical feats and general endurance, simply because these things are now not to be taken for granted in perpetuity.

Parkinson’s may also be giving another ‘gift’. A while ago Jon’s favourite author Terry Pratchett did a couple of BBC programmes about his newly diagnosed Alzheimer’s disease. We were surprised that Pratchett chose to visit the Alzheimer’s section in a nursing home – I would have thought this would be a frightening demonstration of the likely end-point of his journey. But, as he pointed out, Alzheimer’s by its very nature both gives and takes. As your mental faculties fade, so does any awareness that you have a problem (although I expect this still leaves a terrifying middle period when sufferers realize in their clear moments that they are slowly but surely losing it).

Well, in Parkinson’s the blessing in heavy disguise may be the apathy which, according to another book we recently read (Brain and Behavior by Joseph Friedman), affects a large proportion of PD sufferers and makes them not really care one way or another about the gradual loss of functions. Is apathy caused directly by the disease, Friedman wonders, or is it a common coping strategy? Either way, while apathy may make it easier for the person with Parkinson’s to get through the day, it is one of the hardest things for the relatives to deal with.

So I think we both really mean it quite literally when we tell people that Jon getting diagnosed with Parkinson’s was not exactly the best news we could get, but nor was it the worst.