So. This is Parkinson’s Awareness Week and today, rather than naming of parts, today we have World Parkinson’s Day. I’m uncertain how to approach this. I want to write something to mark the occasion although I’ve written so much about my take on the condition in recent months I’m at a loss for a new angle and aware that my long-suffering friends may be feeling all too aware of the P thing as a result. I’m unsure, too, how I’m supposed to feel… Defiant, perhaps? Some weeks ago, over coffee with my friend Rosie, we were excited to discover a social media campaign started by Florida’s Tonya Walker to coincide with the day and to raise awareness about Young Onset Parkinson’s. All that was required was to post a photo with the hashtags #HeelsOnHeadUp and #GoTeamFox & tag 3 friends… Easy. Even when I learn that Tonya’s initiative dates back I think to 2016, I’m up for it: photo taken and posted. But as I pick my way through the proliferating acronyms, I’m wondering just who this day is for.
So I’m interested to read Martin Taylor’s blog ‘Parkinson’s Awareness Week – Part IV’. As he approaches the fourth anniversary of his brush with the ‘fickle finger of fate’ which saw him diagnosed with this ‘elderly person’s’ disease at the age of 32, he aims a ‘swift left hook’ at the concept of ‘awareness’, challenging the effectiveness for the wider community of highlighting how awful our lives are and suggests instead a change in focus, a ‘re-branding’. ‘Parkinson’s Empowerment Week’, he feels, would be a more useful approach, enabling us to concentrate our efforts on sharing within the Parkinson’s community knowledge and research which will help us live well.
The image of the boxing gloves in Martin’s post caught my eye after my taste of life on the ropes this time last week, courtesy of the charity Spotlight YOPD and Rooney’s Boxing Gym. As well as an eye-opener for me on the added challenges of early onset, it was great to meet new people (including author Pete Langman whose book Slender Threads I’d enjoyed. although our projected tango round the boxing ring sadly didn’t happen) and network a bit. And of course to experience the satisfaction of hammering that punch bag. If I lived a bit closer to London, I’d definitely be back – I can certainly see myself benefitting from a good workout once or twice a week. A personal treat at the end of the day came when I bumped into John Conteh, World Light-Heavyweight Boxing Champion from1974 to 1978 so already a local hero by the time I began teaching in his native Kirkby in 1975 and was able to spend half an hour revisiting old haunts in his company and setting our corners of the world to rights.
Back in my comfort zone (more or less), I’m grappling with stride length. Although these days I no longer sign up for workshops on a regular basis, tango is still something I have to work at. One slight hiccup post-DBS has been a tendency to wobble more on the dance floor and as a result my steps have tended to shrink, which restricts my partner’s movement and limits the flow and enjoyment of the dance generally. So I practise, both on my own and with the help of two long-term supporters. It’s not exactly training. But the wonderful tango ‘medicine’ which has sustained me for almost 10 years has crucially been found, as my friends in Cambridge know, in regular local milongas attended by the whole tango community rather than in special classes for people with Parkinson’s and I’m hoping to keep it that way for as long as I can. Tango still seems to me to tick all the Parkinson’s boxes: physically and mentally challenging, it also opens up channels of communication emotionally and socially and I’m keen to share the good news with whoever will listen. In the spirit of sharing, I’m inspired by a new facebook friend to tackle the whole diet issue and am interested to receive a research alert, from the same source, about neuroprotection from infrared light.
So. #UniteforParkinson’s is this year’s hashtag. Awareness-raising or empowering or both, this seems like a good slogan. I watch the video & find a couple of seconds of me dancing somewhere in the middle. As usual when I watch something like this, by the end I feel a bit tearful although I’m not entirely sure why. Is it something to do with the fact that I have a birthday in a couple of days and am not convinced that 68 is something to celebrate? But yes, the desire to celebrate is in there somewhere and, bizarrely perhaps, I feel more than a little proud: to be part of something, a worldwide ‘web’ of a different kind.
You can watch the short Unite for Parkinson's video here: https://uniteforparkinsons.org/
Slender Threads: a Young Person's Guide to Parkinson's Disease was written and published by Pete Langman in 2013 & is available from Amazon.
The poem 'Naming of Parts' by Henry Reed was first published in 1942
RSS Feed
