I reached the end of Chapter 4 of Pete Langman’s Slender Threads last night. It’s a chapter in which he considers the question of what having Parkinson’s “means” – what the results of having the condition might be. He talks about playing the guitar (he was once a pretty good player, I gather) and about attending a less-than-satisfying gig.
But he concludes with the following, which resonated somewhat with me:
Perhaps this is what PD means to me – it means that I must do rather than merely experience. I find reading nigh-on impossible these days. But I write a lot.
It makes a perverse sort of sense.
It makes sense to me, too. I have a need to do. While I still can. Perhaps I try to do too much, but, hey, I’ve got less time than I thought I had. I’ve got stuff I need to do in that time.
And a lot of that stuff is the creative sort of stuff. Writing blogs, painting pictures – the sort of stuff that might outlast me. The sort of stuff that might help other people, or that they might like to keep on their wall, say, and take pleasure in looking at. I don’t think this sort of desire is unique to Parkinson’s, nor that it is necessarily caused by Parkinson’s. But I do think that the urgency to do – to do now – is a result of having Parkinson’s; of knowing what might be taken away from you.
Secondary to this need, but a strong supporter of it, is another part of the knowledge imparted to us by the medical profession’s experience of Parkinson’s:
Use it or lose it.
is the brutal, not entirely honest message (we’re going to lose it anyhow, us Parkies – the main uncertainty is when). So it does make sense. Do it now. Keep doing it. And by doing it, you might just retain the ability to do it for as long as you can.
I don’t know if this is a perspective specific to the young onset Parkie, but it does seem to an attitude expressed by many of the younger Parkies that I have encountered.