Today is World Parkinson's Day .
Parkinson's UK are aiming to make it blue.
So I have turned this post blue - WOW!
And I am wearing blue - plus ca change, plus c'est le meme chose.
Later I'll be doing my Neuro Heroes Circuits class, which I hope encourages some blue language as it'll mean we have been put through our paces.
It is quite something to be part of a 'World' thing, I haven't before (to my knowledge), shame it has to come at the price of having the damned thing.
That said it is brilliant that these occasions can shed light on a massive scale to so many people: creating greater awareness of the disease, encouraging increased investment in research to help find a cure (we hope), better support for carers and medics who go to such great lengths to look after us all.
I was diagnosed in September 2020. However it was around for some time before that, I had my suspicions, most notably a twitchy left leg. The interesting part though was for how long, according to my Consultant I could have had it for 20 years.
Since then I have been munching my way through boxes of Sinemet (levodopa and carbidopa) and assorted others to help treat the various symptoms. It is a bit of a palaver as it is vital that one doesn't eat protein an hour before or after taking the drugs as they won't work.
By and large they work pretty well at keeping the progression of Parky's at bay. However I have little respite in my left leg, which feels like I am hauling a sack of potatoes everywhere I go. That said dog walks (an hour a day at least) and intense exercise classes with Neuroheroes
Pilates and acupuncture are also life savers.
My most common symptoms are fatigue and apathy, both of which are very annoying but do give me a great excuse to sit in my new arm chair and watch telly - at last I am catching up with boxed sets that people in the office were talking about years ago.
Having retired from work I now find the need for interests to drive away my apathy. I aim to achieve one significant thing everyday (which includes a snooze if I am really tired) and have just completed an introduction to wood work class in which we learnt how to make the key joints. Needless to say my creations had little resemblance to the tutor's excellent, easy to follow models. It was fun nonetheless and now I do at least know the theory.
The next big thing is I'll be showing a collection of recent photographs at janenewbery.co.uk in Dulwich Village from 15th April to 28th May. A large proportion of the profits will go to supporting Parkinson's UK (not sure how much yet - I'll need to cover the costs first.
I keep myself busy and am fitter than ever before, which in the great scheme of things is not bad.
Big thanks to the neuro team at King's College Hospital in Camberwell - great care and huge commitment from the Parkinson's nurses to the support teams and specialists.
Thank you everyone else who touches the world of Parkinson's particularly family and friends who make life so much better.
I couldn't do it without my Parky's gang.
(forgive any typos, grammar and spelling errors - writing this has made me quite emotional)