Every year we acknowledge World Parkinson’s Day/Week/Month in our own way. I deliberately eschew the words ‘celebrate’ or ‘commemorate’. Once more we draw attention to this irksome illness for the general public’s edification. We do our five-minute slots on radio and television, have our letters printed in the newspapers, run stalls at county fairs and so on. Each year we group together publicly, rattle tins and, all too transiently, prick the collective conscience, like some half-hearted freakshow. We hear the same well-meaning but flabby questions, give the same trite replies.
We remind the public that the problem hasn’t gone away. We haven’t gone away – well, actually many of us have done exactly that, our powers diminishing to that vanishing point of inaudibility. And this year of course we have had coronavirus to further entertain us as it scythes its way through the care homes.
Each year, we spend billions on research and care, we welcome thousands more to our reluctant community, attend support groups where we eat a ton of digestive biscuits, washed down with gallons of tea. We dust down our placards with the same old slogans, the same overused platitudes while we hope for some serendipitous discovery to deliver us from Parkinson’s. We proudly parade this year’s new initiative from the big charities, the latest ‘great white hope’ that will transform lives blighted by this illness. Each year we swear blood brotherhood/sisterhood, vow to stay in touch and talk about each year as the most inspirational yet. Come May, we’re out of steam and gladly put the placards away for another year.
Well it’s not good enough. I am fast coming up to 15 years with this condition and frankly I’ve had a bellyful. A bellyful of these symptoms, certainly. But a bellyful also of hollow promises, of being mollified and patronised. I’m tired of self congratulatory tokenism towards patients by people who should know better. I’m tired of ‘new initiatives’, bored with focus groups, working parties and roundtables. I want action. I want accountable action. I’m tired of research studies that merely confirm what is already known. Consolidating rather than progressing. Stale smoky inertia rather than the bracing lungfuls of momentum we were promised.
I want more. Much more than this. I don’t want to be rolled out for the benefit of the lay public, like some performing seal. I don’t want you to give me your annual radio sympathy slot for half an hour. You’re probably as bored as I am. I am tired of spin that makes a ‘breakthrough’ of every trivial finding. I’m tired of hype masquerading as hope. Do I sound cynical? Well, I’m tired of cynicism too.
Every time April comes round it seems, more viciously than ever, to be Eliot’s ‘cruellest month’, an indictment of the current unhappy state of Parkinson’s rather than a ringing endorsement of success. There is a limit to the number of people we can tell that a cure is ‘just round the corner’. It isn’t and we should make preparations accordingly.
I want to see a World Parkinson’s day/week/month where we paint the picture as it is. A period of brutal honesty not disconnected delusion. A period where hope is real not hype in disguise. A period where we strip away our vanities, recognise our failings, and stand to give account before our peers. A period where we say, with head bowed, “I didn’t do enough. I didn’t make enough of a difference”.
Yes, I mean you. I mean him, her and them. And I mean me. Above all I mean me.
For goodness sake let us try to be honest with ourselves and each other. This is an incurable neurodegenerative disease with all that entails. The sooner we embrace that uncomfortable fact, honestly and with eyes open, the sooner we can begin to make genuine progress. This isn’t Lala land. This is real. There are no unicorns.