Parkinson’s Awareness Week in the UK – Day 1 – Get #incontrol

FB_2ParkinsonAwarenessIts Day 1 of the UK’s Parkinson’s Awareness week – the hashtag #incontrol is being Tweeted far and wide and it is truly heartwarming to read the stories and see the pics of all those battling life with parkinson’s or supporting those with the disease.

The tag “in control” is a good one as living with early/mid-stage parkinson’s can often make you feel very out of control – a light-hearted analogy might be to imagine riding one of those subterranean, log-flume-y, about-to-get-wet/scared/surprised, kind of rides at  a theme park or a ghost-train at a funfair where just when you think you have coped with one thing along comes something else to surprise you –  the reality of course is that with parkinsonism you never get off the ride but familiarity with the surprises can lessen their shock value.

These days, those of us living with parkinson’s disease/parkinsonism have the advantage over those who had the disease before the development of modern drugs.  Neuros are often quoted as saying “if you have to have a brain disease, then parkinson’s is probably the best one to have” – not because there’s anything delightful about losing the ability to smile, walking weirdly, writing illegibly, choking while eating, mis-hearing, mis-speaking and all the other horrid ways parkinson’s changes how you are, but because there really is a world of support available to help us be #incontrol, there are  drugs that can ease symptoms, and there are therapies to help delay the onset or worsening of the condition and, finally but far from least of all, is the fact that the world wide web can bring us all together from every corner of the globe.  No one with parkinson’s should ever feel alone in their fight and, together, we can help one another be #incontrol.

This week’s Parkinson’s Awareness tag #incontrol means for me, that with everyone’s help and with my firm resolution, I and not my parkinsonism will be in charge!   My part of the bargain is to find out as much as possible about the disease and what may lie ahead for me, and then do my utmost, with the help of everyone and anyone who can help, to figure out ways to deny the disease its progress.

  • Parkinson’s is known to rob fine dexterity… so start doing something that requires such dexterity to build an alternative muscle-memory of it (knitting and knitting socks has been my answer, for many it is playing a musical instrument).
  • Parkinson’s is probably going to wreck how you walk/move … so practise movements to help prevent this (LSVT BIG is amazing!) and make exercises and stretches part of day-to-day activities (yes you can sit on a Swiss balance ball while vacuuming, and it is possible to stand on tiptoe while waiting for a kettle to boil!).
  • Tiredness can be overwhelming and very little effort can wipe you out completely … so pick the optimal time to do something so that you relish its outcome!
  • Tremor can and will fling food off your fork .. that’s OK at home, but otherwise choose mashed potato as a side dish, don’t hesitate to use a spoon if its easier, or maybe just choose sushi or finger food instead!
  • If you are out and about and think you need help to do something and there’s someone around to ask… ask them for help.  Most people actually like knowing what it is they can do to help but often won’t offer for fear of offending.

Just do it….. get #incontrol!

@joannekarma
#RCtheParrot

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

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