Call Me Mr. Parkinson: The Naked Truth, Nothing Else
The real, underlying problem Parkinson's folk have is that they comprehend there is no cure for this monstrous, unassailable and undignified infliction, yet no one - or very few people they meet - are prepared to be entirely honest with them about it.
Being honest about Parkinson's
As a PD sufferer of ten years, I will be honest with them, and describe precisely how it is. It has an almost unnoticed beginning but, as time progresses, it becomes a curse, worn like a great chain around your failing body. You delude yourself by thinking you're getting the better of it, but that doesn't succeed.
Slowly, year by inexorable year you're getting worse. You talk to countless neurologists; they change the drugs, but with limited effect. You ask for surgery, but you get put on a waiting list and forget you waited so long. You join a support group, but folk seem reluctant to talk. You end up giving up sex entirely but wish you hadn’t. People stop you in the street to say: 'You're doing so well,' but you know that it's a lie.
They also know that there's no cure, nor is there likely to be one, certainly not in your brief span. And what of that ultimate question: 'How long have I got?' No neurologist I've met has been entirely honest about this. The best I got was when I asked one of them: 'I'm year ten. D'you think I'll get to year 15 and not be totally gaga by then?' Came the reply: 'I'd say 15 was conceivable but it's never predictable. With a mind like yours you could survive longer.'
So. There we are, guys. Someone at last who is prepared to tell it like it is. Every day I face the Grim Reaper, and every day he sits there, invisible to everyone but me, sharpening his scythe, smiling, telling me 'Not yet. Not today. I will tell you when.' Smug, lucky bugger. He's got it all worked out. But I haven't. But then, he hasn't got Parkinson's, has he?
Do you find music to be an important factor in your life with PD?