That’s right, it’s time, once again, for World Parkinson’s Day. I’ve often wondered about the wild proliferation of ‘days’ such as this. I presume the trend stems from the 1919 adoption of 11.11 as Commonwealth Remembrance Day following the ‘war to end all wars’. This day has, of course, not only turned into remembrance minute, but has been joined in the calendar by more ‘days’ than I care to count (one website lists 7 national days for April 11, including pet, barbershop quartet, eight track and, get this National Marketing Operations Appreciation Day), and International Parkinson’s Day does not, apparently, figure in the UN or UNESCO lists. It’s almost as bad as saints’ days, and that’s before we even consider how many of them have multiple responsibilities. Saint George, for example, has more side hustles than the average Tory MP.
There has been a lot of huffing and puffing in the Parkinson’s ‘community’ (we’re all in a community now, people, whether we want to be or not) about what the point of World Parkinson’s Day (WPD) actually is. ‘Awareness’! cry some. ‘Awareness of what? I’m all-too-bloody aware of his disease.’ Comes the reply. ‘We need non-parkies to know what we’re going through so that they …’ they what? Understand? Treat us better? I, along with many others, have been beating the ‘awareness’ drum for some years, and to a degree it’s working. Everyone I know is heartily sick of me banging on about it all, but there does seem to be an increased presence, especially of Young Onset Parkies such as myself – though, once again, as I age, people are less convinced by the ‘young’ part of this designation. We have more celebrities coming out of the parky closet than ever before, which is a thing – I’m as yet unconvinced it’s a good thing, mind, but at least it gives people more places to go than ‘like Ali, or that actor bloke, you know, was funny …’
There are arguments over whether we need the public (you know, the other people) to understand our symptoms better so we suffer less when we’re out and about. I’m not drunk, I’ve got Parkinson’s! And yet still we’re abused for looking like pissed idiots (I’ve yet to hear anyone report that someone has commented on an individual’s Parkinson’s only to be told ‘It’s not Parkinson’s, I’m pissed!’ which is a real pity). We’re treated as though we’re made of glass, talked to as though we’re idiots, you name it. Is this changing? Good question. Perhaps. Others say we need to communicate how it makes us feel. ‘No one ever considers that’, they say. Well, we do, and we have. Relentlessly.
Symptoms or psychology? Self care or health services? Neuro-pharmacology or natural medicine? You name it, we disagree about it.
And then there is the apparent upsurge in diagnoses for YOPD – is this a lifestyle issue, pollution, pesticides, or perhaps all this work on awareness is filtering down to the medical profession? There isn’t enough research being done to decide, so we’re reduced to ‘hot takes’.
Speaking of research, should we be looking for a cure (‘it’ll be curable in 10 years’ are words everyone diagnosed with Parkinson’s has heard for at least 20 years), or looking to ameliorate symptoms to improve the quality of life.
Speaking of quality of life, there are serious debates to be had around the subjects of mental health, family structure and breakup due to Parkinson’s (with especial reference to dopamine agonists), carers, being a carer, being cared for … whether we should have the right to say ‘enough!’ and end our suffering (and that of those around us).
These are just some of the nettles we are failing to grasp.
Don’t Worry, Kids, the PR Companies Are Here to save Us
And what has happened? Well, kids, we’ve got a new logo. Yes, you heard right, Parkinson’s has been rebranded. It’s called ‘the spark’, and it talks about itself in the first person, and has its own twitter account. Its accompanying literature refers to Parkinson’s as ‘the world’s fastest growing neurological disease.’ I wants me some of that! Oh, sorry, it sounds as though you’re promoting it. It’s not a club? A church?
Responses from within ‘the community’ have been, well, damning. It’s not just that there was already a Parkinson’s symbol, the tulip (though what the fuck that has to do with it is anyone’s guess), and it’s not that this ‘spark’ bears a rather unfortunate resemblance to half of the badge of the Waffen SS (though it does). It’s not even the frankly disturbing way in which it’s suggested that it can be used (see this for examples of customising it). It’s a visceral, ‘what the fuck?’ reaction.
I’m sure many of you will disagree, but we don’t need a logo. We don’t need rebranding. After all this, here’s a tweet which, I think, rather sums things up:
As a person w/Parkinson I’m probably expected to b grateful 4 all efforts 2 raise awareness. I’m not. IMO launching a new symbol seems like a desperate attempt 2 b seen as doing smtg useful instead of doing the work actually needed
Word, as they say.