What a night! The Party for Parkinson’s music/poetry evening on Saturday April 6 was a huge success.
Richard Townsend, the mayor of Bishop’s Stortford, opened the evening. All the musicians were fabulous; Andy and The Hybrids, Paul Tully, Big Door Prize and Ancient Geeks. The audience seemed to enjoy Janet Bric a Brac, my poetry-performing alter ego, and laughed in the right places.
The raffle and merchandise were well supported. As for the dancing security guards, well, you had to be there.
A big thank you to Twig and Annabel for all their hard work, we couldn’t have done it without them. Thank you to Nic and everyone at The Belgian Brewer.
Thank you also to South Mills Arts, Stortford Music Festival, Fast Feet and Swirl Accessories for donating raffle prizes, and for the generous donation by Inflite Engineering Services.
I often hear the Benny Hill soundtrack on loop in my head when out and about (ask an over-50). In contrast to my slow movements, everything and everyone appears to be getting faster and faster. Whilst I am slowing down, the world appears to be speeding up.
This was particularly apparent at the rehearsals with The Hybrids. No, the band members weren’t running amok, knocking over music stands. Despite moving in slow motion, this was more likely to be one of us living with Parkinson’s disease (PD). Thank you to the band members for their patience in moving equipment two centimetres to the left and also for providing an arm, or two, to help us negotiate the room with its musician paraphernalia.
It was fantastic to hear and see a bass player, lead guitarist and drummer, who had never played together before, coming together and playing like they had been a band for years, rather than days. They had learnt my partner Andy’s songs by ear, simply by listening to his CD.
The brain surgery has made me into a hybrid human. Despite reducing my tablets post-operatively, it is a constant juggling act to balance medication, machine and mealtimes. Protein interferes with medication absorption. A meal eaten too close to taking my tablets will usually (but not always) leave the medication wandering around my body a bit lost (not a scientific explanation).
Planning for the day started early. I had my dinner at 10am to get my main protein meal out of the way, in the hope that my body would remember this at 6pm when my stomach was expecting dinner. I took my tablets regularly and, with no protein obstructing its pathway, I hoped my medication would have a clear route to my brain.
As regular readers will know, the best laid plans don’t always work. However, my medication must have found my brain. This, I am sure, would have been helped by the success of the evening which, if I understand it correctly, would have given me a dopamine surge of happiness and positivity. My medication and machine, for once, worked well for most of the evening.
Pre-diagnosis I would put off many things until that increasingly busy day in the future, ‘one day’. PD gives you a sense of urgency for doing things. Diagnosed 11 years ago, at the moment it feels like my body is ageing much faster than my mind, a kind of early warning alert for old age. I could quite easily get depressed about this. Instead, I try really hard to keep going and remain positive, which is not always easy.
The money is still coming in after the Party for Parkinson’s. But as important as the money is the awareness created surrounding living with a chronic condition. It has its challenges, but many of these can be (sort of) overcome. With extra planning, understanding and a snazzy walking stick, you can still live your life.
Here is a review of the night by Jen: “What a brilliant evening of great music from top-of-the-bill Andy and his band and the talented Paul Tully. Julie’s poetry was a blast and had us giggling. We really enjoyed it all.
“Thank you Andy and Julie for organising a great event, raising awareness of PD and forging a way through it by your example and energy.”
Despite its success, I hope it was the last awareness event and next year we will simply be celebrating April.