230: And we’ve had a postcard from Mrs Trellis

We were nearly late for the appointment.  Couldn’t find anywhere to park.  The only spaces near the hospital were for wheelchair users – don’t you think they could be further away?  After all – they’ve got wheels.

So, the professor got me to walk up and down a bit and prodded me and said ‘yes, that’s Parkinson’s.’  My wife said ‘how can you tell just from that?’ The professor said ‘well, there are other signs too.  Your handwriting has got very small, for one thing.  And your facial muscles seem a bit frozen – you seem to be finding it difficult to smile.’  ‘Well, that could be,’ I said, ‘because you’ve just told me I’ve got Parkinson’s.’

We asked about the future and he said that it’s difficult to predict.  Could be fine for many years; could end up in a wheelchair.  I thought, well – at least I’d get a parking space.

One person in every five hundred has Parkinson’s.  That’s 127, 000 of us.  Parkinson’s UK says that every hour of every day someone is told they have Parkinson’s.  That’s really tough if you’re the one scheduled to get the phone call at 2 a.m.

The comedy writer Paul Mayhew-Archer was, for me, one of the highlights in last week’s PUK fund-raising Symfunny at the Royal Albert Hall.  He was diagnosed with Parkinson’s in 2011, a year before I was, and his act was about the humour of having Parkinson’s. He was honest and funny and I loved him.

Among the comedy gold in his credits, Paul has worked on I’m Sorry I Haven’t a Clue, which may be why Jack Dee with most of the Clue team (Samantha was otherwise engaged in an Italian ice-cream parlour ‘licking the nuts off a Neapolitan’) gave their evening to play some classic rounds for us.  I was in my element, having listened to Clue since it started in ’72.  In my heady teenage, I’d go to the far corner of the school field with a packed lunch and transistor to catch the lunchtime edition.

In fact, the words of ‘My Old Man’s a Dustman’ to the tune of ‘Girl from Ipanema’ (as modelled by Willie Rushton) was our default song when rocking offspring to sleep.  It’s strangely hypnotic- try it.

Actually, there was a splendid array of generous performers at the concert: Jason Manford, Josh Widdicombe, Rob Deering and Mrs Brown were all very funny. Some good musical acts too, my very favourite being Katie Melua with a haunting acoustic rendition of ‘Closest Thing to Crazy’.

In all, a really good night.

But.

For me, the pleasure was unfortunately somewhat dampened by a couple of films showing people struggling with horrible Parkinson’s symptoms, linked to a plea for donations. Then people with Parkinson’s looking mournful while the orchestra played Nimrod.  (I haven’t mentioned the orchestra – they were great.  So were the choirs.)

No criticism of the people in the videos, who obviously gave of themselves for the best of motives.  But I found it vastly uncomfortable, and, had I been at home, would have gone and made a cup of tea until they were finished: not possible, alas, from the Gallery of the Albert Hall.

I thought these videos were misjudged.  For one thing, if you have Parkinson’s – or any degenerative condition – then you cope by dealing with the present symptoms as they are now.  It can actually be quite distressing to be faced with the message ‘what you have is horrible and could well get a lot worse’.  Must have been even more difficult for any newly diagnosed people in the audience; I’m far enough in now to have met many people who have had the condition for ages and are still enjoying life – not so five years ago.

I do know that money is desperately needed to move forward the research but no-one in that audience would have been under any illusions about Parkinson’s not being a Good Thing.  I’d have liked to have heard more about the incredible progress being made by various projects towards a cure; this was touched on but could have been covered in greater depth and would have given a more positive thrust to the fundraising.  Just my opinion, of course.  If anyone else was there, I’d like to know what they thought.

Reading the programme on the way home, there was mention of Paul Mayhew-Archer having made a documentary back in March 2016.  It’s called Parkinson’s: the Funny Side and went on to win the Grierson Award.  Yesterday, I steeled myself to watch it, knowing that I could easily get to the kitchen if it got too much for me.

As it happens, I laughed aloud and found it thoroughly uplifting.  Paul M-A has now joined my gallery of Parkie heroes.  If you have half an hour to spare, then you can find it here.

***

Talking of Parkie Heroes, well done to those who ran the marathon on Sunday for Parkinson’s UK and the Cure Parkinson’s Trust.  Among others,  comedian Rob Deering and headteacher David Feasey.  I was asked to go to David’s school on Friday to do some assemblies about Parkinson’s.  The children and staff were lovely: welcoming and attentive.  It was a real pleasure to meet them.

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4 responses

  1. Roz Butterworth | Reply

    Enjoyed reading this – and agree with the sentiments entirely about the grim films, have you shared that with Parkinson’s UK?
    I assumed you had seen the Dave Mayhew-Archer documentary – I saw it last year and was so heartened and entertained by it!
    Keep up the good work!

    1. Thanks. I wasn’t brave enough to watch the documentary last year but once I’d seen Paul M-S, I realised that it would be ok. I really am the most dreadful wimp.

  2. As ever Jel, an honest take and a really good read. So disappointed we didn’t make it to the show, but will do next time.

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