If everyone with Parkinson’s tells a non-parky one new fact about living with the condition, that’s one huge awareness resource for today’s World Parkinson’s Day.
Some people with Parkinson’s (PwPs) – or indeed any chronic condition – grumble about awareness days. They say “We have to live with it year round – for us every day is awareness day.”
I was cynical too, this time last year (Here comes the sun) till I stumbled on a webinar about multidisciplinary team (MDT) care. This, and a ‘solar system’ diagram in The Lancet that put the PwP at the centre of their own care universe, fired me up. I now have the privilege of representing the PwP voice with the expert panel of health professionals who make up the UK Parkinson’s Excellence Network. We are putting the finishing touches to the Network’s vision for multidisciplinary care. Care for PwPs in my part of the world is still fragmented, but at least I now know what excellent care should look like.
Back to this year’s cynics. As usual representing the glass-half-full-and-another-one-waiting brigade, I look at awareness days as an opportunity for people with a condition to tell somebody without it something new. Something that will help the person without to support and understand their friend better and maybe pick up telltale signs. If all 145,000 of the estimated UK PwPs gave out one golden nugget of info about life with Parkinson’s – that would be one hell of a resource.
This year some golden nuggets were harvested in the form of limericks. Parkinson’s UK invited people to submit poems about their life with Parkinson’s – you can see the full collection here.
I sent in two. Bradykinesia focused on my lack of speed:
It’s a funny old thing, this disease
Y’ get something called bradykinesia
While your head wants to go
Your body’s sooooo slow
But trust me, it does become easier.
Parkrun focused on my asymmetric gait and how I worked hard to balance things up:
My right foot said “Let’s go and play!”
My left foot said “Please – go away!”
So I worked on my gait
Got everything straight
And I’m running the parkrun today
Today’s the day
It’s a busy day here at ParkyTracks Towers as I mark World Parkinson’s Day.
I’ll be dropping in on the 2022 Insight into Parkinson’s conference presented by PD Warrior from Sydney, Australia (but restreamed at sensible times of day!).
At lunchtime I have a power PD session with Neuro Heroes on Zoom – a challenging but fun hour of strengthening, balance, co-ordination, multitasking and Parkinson’s specific neuroplastic exercise. The icing on the cake is seeing how many times I can sit to stand in a minute. Stand tall from seated, bottom must touch the chair each time. Last week it was 63. Today I’ll be adding my total – and a few more after the class – to Neuro Heroes’ target for the day of 145,000 sits to stand in 24 hours. That’s one for every PwP in the UK. Will you join me?
Awareness 365
Most of all, today I will be putting my energy behind renewed efforts to make sure that PwPs admitted to hospital, for whatever reason, receive their medicines on time. A film launched on Twitter this morning reveals the shocking statistic that in 2018-2019 people with Parkinson’s spent an extra 28,500 nights in hospital. This cost the NHS £10 million.
A Neuro Heroes classmate, Jonny Acheson, sees this problem from both sides. He is both emergency doctor and a young onset PwP.
He says:
“If patients miss more than one dose it may increase the length of stay and the falls risk. They may fail the physio assessment and not be discharged home. If it continues, they can become critically unwell and need intensive care. So please – find the meds and prescribe them. Not just the first dose, but all the Parkinson’s medication for 24 hours.”
Too much information
One disadvantage of awareness days is that there is far too much information to cram into 24 hours. This is why I blog year-round to encourage, educate and entertain. Do I get it right? My pal Chris Lindop thinks so.
“What do I, as a P without P, enjoy about parkytracks? Well, the crackling positivity and outrageous jokes and puns, for a start. “If you can meet with Triumph and dysarthria…” enough said. But I’m always learning new things as well. There’s a characteristic forward slump? I had no idea. Improv is beneficial? Well, I’ll be danged! Ali is constantly uncovering new apps, techniques and aids to a better quality of life. I’ve just been reminded of Clock Yourself, and I might just give it a try.
“And my own particular affliction? Senile keratosis – or if you prefer, a wisdom wart (though I’m not sure that’s any better). It’s common on people who grew up in sunnier climes, in my case New Zealand. I’m going to neither agonise about it or pay to have it removed. Instead, I’ll comb my fringe over it and consider it to be a souvenir of golden summers long ago. Now pass the Factor 50, would you?”
Play > Poetry in Motion > Johnny Tillotson
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