45. Re: Annual Renewal of Parkinson’s

Mr J Hunt
Secretary of State for Health

Dear Mr Hunt,

I am writing to thank you for my year’s free trial which finishes at a quarter past three this afternoon, assuming that we are counting from the moment of official diagnosis.

I have been considering whether to renew my membership of the Grand Order of Persons With Parkinson’s; that elite band of comrades with its not-so-secret handshake.  Frankly, I am still undecided.

I have to admit that my first year has not turned out as I expected.

When I first realised that I had Parkinson’s – in a very scary late-night session with Wikipedia – I truly thought I would be booking a trip to Switzerland before the year was out.  My knowledge of Parkinson’s at that point was extraordinarily limited – I have blogged on this before here so won’t bore you with the details.  Our good friend James died a few years ago from Motor Neuron Disease and I knew that I didn’t have the grace and strength of character that made him a privilege and joy to be with, right to the end.  It only takes a mild bout of cystitis to turn me into Eeyore.  I lay awake that night trying to work out our finances and wondering how long the disease takes to progress.

So the first surprise is that, a year on, not only am I still here but in better shape than on diagnosis.  Loving friends investigated the condition, while I was still quivering behind the sofa and pointed me in the direction of exercise as the only proven way –  at the moment – of slowing down the progress. (You know who you are – thank you!).  I’ve taken up running, Pilates and yoga.  I’ll never be a natural athlete – my position of choice is still in an armchair re-reading Dorothy L Sayers – but it turns out that all that stuff they say about exercise being good for you is true.  Who knew?

My second surprise was to find out that, without realising, I’d been battling with depression caused by Parkinson’s.  For years, life had felt like wading through treacle; feeling down without nothing to feel down about: great family, great friends, great colleagues but still with no bounce in my bungee.  I wouldn’t say that the diagnosis was actually a cheerful occasion but it came as something of a relief to have an explanation for the symptoms and to be able to do something about them.

Another positive has been my discovery of the world of blogging.  My oeuvre a year ago consisted of a couple of short stories and an article in the Times Ed about why there were so many teachers in the Guardian Lonely Hearts column.  I have drawers full of detective novels which have never reached Chapter Three.  (For my most recent attempt   – set in a school, with the working title of ‘The Interactive Whiteboard of Death’ – I asked the site manager how he would murder someone in the boiler room.  Worryingly, he barely paused in showing me a beautiful M.O. and didn’t even ask why I wanted to know.)  But story writing has always felt like hard work followed by a micro-moment during which people might actually read what you have done before it hits the recycling bin.  I’ve often struggled to find something to write about.  I now have a subject.  Be careful what you wish for, my best beloved…

Blogging, it turns out, is very cool and groovy.  You don’t spend months waiting to see if an editor will deign to publish your piece.  You please yourself.  And sometimes people other than your parents read it and even comment.  Blogging has brought me into contact with an OHoPWP (Other Half of Person with Parkinson’s – we like our acronyms, us Parkies) who tells me that she and her husband have taken up marathon running since his diagnosis a couple of years ago.  I’ve had cheery and encouraging comments from all kinds of positive people and these really help when I get an attack of the Dementors. Moreover, the actual process of writing is – well, fun.

And talking of fun, my final consideration is that having a degenerative disease don’t ‘alf focus the mind on the here-and-now; rather than putting the enjoyment of life on hold until you’ve just done this, that or the other.  Not that this last year has been all sweetness and light – there were some pretty grim moments just in from diagnosis; and some rather nasty anxiety attacks which it seems were related to a clash between two of the drugs.  Plus my shoulder hurts.  But this year has also brought many wonderful moments just enjoying the company of family and friends, music, books, the natural world, my job.  I find myself coming over all meditative.

So, Mr Hunt, do I want to take up the opportunity of another year in the Grand Order?  I don’t suppose you could tell me what it might bring, could you?  Or would that spoil the surprise?  Tell you what, I’ll give it one more year.  But only one, mind, so you’d better get your finger out to fund a cure. Or next year, I may refuse to renew my membership.

Blue Skies

Jellywoman

PS: If you’re a UK resident, have you signed the e-petition asking for increased Government funding for Parkinson’s research? There’s a link to the petition here.  2,118 signatures at present: just under 98,000 to go.

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4 responses

  1. Like you, my diagnosis was a relief. It explained why I was always tired, the insomnia, difficulty following multi-layered conversations, etc. Also believe in the magic of exercise and the therapy of writing. Found that hypnosis helps keep my attitude, and altitude, in a good place. Love your post. Best wishes on the success of your e-petition.

  2. Just spent a very enjoyable hour catching up on the chronicles and avoiding report writing. It is interesting that somehow something really grim has made a positive impact on your life. You’re an inspiration.

    1. Thanks for the comments and for the material!

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