36. Listen, do you want to know a secret…?

“Did you know that Parkinson’s Awareness Week is next week?” says InfantPhenomenon.  She’s just started work as a trainee journalist and is calling me in her coffee break.  I, however, am on Easter holidays and evading doing school-work by skulking in bed with coffee and a Kindle.  Lounging around while the children are at work; Earth hath not anything to show more fair.

“Yes – Parkinson’s UK have got this thing on Facebook.  People send in pictures of shoes.”

“What’s the point?”

“Well, I think it is something to do with challenging people to put themselves in the shoes of someone with Parkinson’s…”

“Yes, I get that.  I mean, what’s the point of Parkinson’s Awareness week?”

“Huh?”

“Well, what’s it trying to achieve?  I mean, take Dyslexia Awareness: that’s trying to make people aware that there is a positive side to dyslexia.  That dyslexic people are often very creative; that they can be an asset in the workplace; that the inability to spell can be the flip side of something positive.  Whereas there’s nothing positive about Parkinson’s, is there?”

I take a gulp of coffee.  “Well, for me Parkinson’s has meant taking an extra day off work each week… and it’s kick-started my writing career … and I’m much fitter than I was … and …”

“That’s not what I mean,” counters InfantPhenomenon.  “You could have done all those things anyway, without Parkinson’s.  I mean Parkinson’s itself doesn’t have a positive side, does it?”

“I’ll have to get back to you on that one,” I say, mopping up the coffee I’ve just slopped over my Kindle.

I think back to a year ago.  Last April, I had just started to notice a tremor in my right hand and a bit of an ache in my shoulder.  I joked with colleagues in the staffroom about it being Parkinson’s because I knew that it couldn’t be.  Neither was my cold, bird ‘flu.

In terms of Parkinson’s awareness, I “knew” that it was mostly a disease of older people which make you shake and then quickly led to a wheelchair and then dementia; that it was incurable and untreatable; and that it was a death sentence.

I suspect that many people would share this initial impression of Parkinson’s.  There is certainly scope to raise awareness.  But how to approach it?

We could explain that Parkinson’s is not just about tremors.  There are plenty of other unpleasant symptoms to choose from – mental as well as physical –  and these can have very debilitating effects.  Plus we could break the good news that you can get it at any age.  Needing to bring up your family doesn’t give exemption. You already knew this was a horrible condition, we could tell people, but actually it can be even more horrible than you thought and what’s more – you can get it too.  No need to wait.

But as InfantPhenomenon asked, what’s the point?  People already know Parkinson’s is grim.  No-one has it on their Christmas list.

If there was a Parkinson’s Awareness week last year, then I’m afraid it passed me by.  But if I had a Tardis and could go back a year, what could I have usefully got from such a week?

I would like to have known that Parkinson’s moves at different rates for different people but with medication and exercise, you can still live a long, worthwhile and happy life.  It would have been really good when Parkinson’s became a possibility, and then a reality, to know that it wasn’t a death sentence.  Because at that stage I honestly thought it was.

I would also like to have known about the progress being made towards a cure.  I can’t be the only person immensely heartened by the possibility of a cure in the foreseeable future; treading water while the scientists work out how to get to me.  Most people outside the PD community don’t realise that a cure is a real possibility, and neither do they realise that the research is so dependent on public donations; that money is needed urgently, now, so we can manage this last little bit.  This was brought home to me today when Dr LaMancha told me of his hopes that the funding will be granted for the next stage of the drugs trial.  I had somehow imagined that all this was covered by the NHS.  But of course it’s not.

So no, InfantPhenomenon, there is not a positive side to Parkinson’s.  But there is a positive message to be spread: that clinical research has already done wonders with the quality of life for those of us with the condition and with sufficient funding – either directly from the public or from a government response to public pressure – then Parkinson’s can go the way of Polio, hopefully acting as the pacemaker for other neurological conditions to follow in the same path.

What do you think?

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