By Gillian Lacey-Solymar
For the country this may have been a weekend of sport - and Spanish sport in particular. For me though, it has been a more of a Parkinson’s dominated weekend, to put it mildly. Fun though. Isn’t it odd how things change over time; if you had told me 10 years ago that I could put the words fun and Parkinson’s into one sentence I would have not believed it. Actually, there’s a poem about that later on…
So what did my Parkinsonian weekend consist of? Well I’m cheating a little in that Friday evening was entirely PD-dominated, as was Sunday lunchtime, but my only Parkinson’s connection on Saturday was that I managed to get to the Wimbledon ladies final (hurrah!), invited by, Sally, our wonderful podcast publicist who in her youth played junior Wimbledon with great success – and I took the opportunity to don a new Movers and Shakers T-shirt which we are thinking of selling on the website (Is this a good idea? Answers on post card please).
Let’s do this chronologically. The Friday event was called “To be heard” and was arranged by UCL, where I lectured for 25+ years. It was an evening about music and Young Onset Parkinson’s Disease (YOPD). Arranged by the indomitable Dr Jennifer Foley and energetic artist Alison Collier, it was an evening dedicated to building the community of people with YOPD, many of whom know nobody else with the disease. Unsurprisingly that feels very isolating. Not only was it about building bridges, but about celebrating the tremendous talent of so many people with YOPD. With such excellent performers it felt like a rare privilege to be asked to compère the evening.
Jennifer asked me to give a talk about the positives of having PD. Not easy. I chose to do this in verse.
Then came the talent…
It surprised me that so much of the music was very energetic:
David Sangster, Annie Booth and Mike Bell singing their own songs and poetry, the remarkable Tomas Gisby on the sax, together with the wonderfully named Miss Havisham’s Digital Clock and one of the undoubted highlights of the evening – the Soundscape. This was a piece 11 minutes long which we were encouraged to listen to with our eyes closed. It gave a very strong sense of how it feels to have Parkinson’s – from the insistent percussion symbolising the never-ending tremor, the discordant moments showing the disorientation we all feel at times and the soundbites from those with Parkinson’s, where the illness was compared to having an ugly battered backpack that we all have to take everywhere. A disturbing and therefore accurate analogy.
Will you excuse if I’m a little self indulgent here for a sec? I had been encouraged to show an excerpt from my musical, IrrePRESSible (about the life of Emma Hamilton, as seen through the eyes of a modern tabloid hack). Sung by the wonderful Savannah Haynes, who stepped into the breach on Monday despite not knowing the music and being in the middle of her GCSEs. Post GCSEs she is going to re-record both and I will then post them here.
In addition there was a powerful award-winning Irish film about YOPD of which we saw a 20 minute excerpt (The New Music, written and directed by Chiara Viale) and the end of the evening was outstanding – the soprano Bibi Heal and London Philharmonic’s Simon Carrington.
Bibi is putting together Songs that Move, a therapeutic programme of artistically-led physiotherapy for people with Parkinson’s or aphasia. Mark and I are heavily involved and will bring you more on this highly innovative scheme soon.
To Sunday. I was invited by fellow YOPD-er Rachel Gibson to give a talk to group of her neighbours and friends. She had asked me to help raise the profile of Parkinson’s. I started thinking about what to talk about and remembered that in the days when I was lecturing, there was a famous four point model for marketing, called the 4 Ps (Product, Price, Promotion and Place) and I thought - why shouldn’t there be a similar model for talking about PD?! So as with all these things, if it doesn’t exist, why not invent one? So I decided my 4 Ps and talked about : 1) PD in general, 2) the Podcast, 3) my Personal take on the illness and how it affects me and finally I thought I would read the 4) Poem written for Friday’s UCL event. After all, in these ecologically conscious days, aren’t we all supposed to recycle… Plus ultimately I had the reassurance of knowing that if I’d run out of Ps, I could always have referred to Ping-Pong Parkinson’s...!
The group were very interested and a little horrified to hear some of the details of what it is like to live with Parkinson’s. It is the multiplicity of symptoms which surprises people and the fact that it can be come at an early age, they were also a little horrified to hear of the dyskinesia and other problems caused by the drugs themselves. It is good to enlighten people even if it does shock them at times.
One other highlight of the day was meeting Mike Ashton, who is the new chair of the Cure Parkinson’s board of trustees. He is delightful and we are going to talk further.
The lunch raised £550 for Cure Parkinson’s and those who have not yet signed the petition promised to do so.
No doubt most of our erudite readers and listeners are familiar with Parkinson’s Law (devised by Cyril Parkinson, no relation of James Parkinson who came up with the illness itself), namely that work expands to fill the time available for completion. I wonder whether the opposite is also true: ie does work diminish if you have less time in which to complete it ? It seems to have been a very busy weekend, but full of incident and events, of hope and of promise.
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