Eek, the pressure!!
When I first started writing this blog back in October 2012, it was oh so easy to find things to say. My friends and colleagues, on the whole, knew as little about Parkinson’s as I did and seemed interested in walking the journey with me. The hardest thing about starting the blog proved to be taking the actual Jellywoman photo: my lovely colleague Amy and I struggled for ages with tubs of Hartley’s finest strawberry flavour and various playdough accessories. It turns out that jellies are not as stable as one might think and the resulting grizzly mess of plastic limbs and collapsed gelatine suggested a particularly obscure episode of Endeavour.Continue reading →
It seemed so straightforward when Helen explained it yesterday.
I’m to wear this watch-type thing which tells me the time – so, in fact, a watch – but it also collects data about sleep patterns. A bit like my FitBit but much clunkier, less useful and a horrid institutional grey. I’m to wear it continuously for two weeks, day and night, and then send it back in the prepaid Jiffy bag together with the sleep diary. In a year’s time, they’ll call me back and I’ll do it again.
We’ve been given Persona 3 to look at. He’s 41, single, works in IT. He likes sport and he drives. He’s not much of a reader, likes to travel and is umbilically attached to his phone. He doesn’t want anyone to know that he’s just been diagnosed with Parkinson’s. Especially not his mates; especially not his work.
Our task now is to figure out what would help young PeeThree get to grips with his diagnosis. Apart, that is, from a cure, which would obviously be everyone’s first choice.
As a novelist, says Anna Burns, her job is “to show up and be present and attend. It’s a waiting process.” She “just had to wait for my characters to tell me their stories.”
(Interview by Alison Flood in The Guardian, 16 Oct ’18)
This obviously worked for Anna Burns as she has just bagged the Booker Prize with her novel Milkman.
I, however, have spent a lifetime waiting for characters to turn up and write themselves into a book but they haven’t done so yet and I’m rather starting to fear they never will. I go to bed having put out my finest stationery but masterpieces come there none. Not so much as a shopping list; not so much as a tweet. Perhaps the characters have used up all their best ideas writing other people’s books. They have no more twists.
I’ve recently been diagnosed with Parkinson’s. If you were me – which research project or trial would you volunteer for?
This question is being asked by a woman in – oh, her early thirties? She’s near the front so it’s a bit difficult to see from my chair at the back. Although, being by a window, I do have an amazing view of the misty city’s domes and spires. From the ninth floor of the Bentley Institute building, we are looking down on St Paul’s. We’d spent a little time before the meeting started picking out landmarks and talking with one of the staff. ActorLaddie asked if they had a roof garden. No, apparently they had a domed roof. So not the best shape for a roof garden. Unless, I suppose, a hanging one.
So that you don’t burst with suspense, I’m going to tell you now that the answer to the woman’s question was, in essence, it depends.
“Now, I have to tell you about the possible complications,” says the Good Doctor. “These are incredibly rare: I’ve done many, many lumbar punctures and no-one has ever had a problem but, legally, I still need to tell you.”
“Can I say that I’d rather not know?” I ask.
“I’m afraid not,” the Good Doctor tells me.
“Now, we need to make sure that all the points have contact with your skull. If you look at the screen, you’ll see that most points are showing red at the moment.”
I look at the screen and indeed, on the diagram which represents my skull, there are many, many red spots – a positive plague of red spots.
“Now, when the points have sufficient contact, they go green. So I’m going to manipulate the points until they have contact. It is not painful – a bit like having your head massaged.” And off he goes.
I wasn’t put to the piano as a child. Refused the offer of lessons, apparently: as good a reason as any to invent time travel. But I’d really like to be able to play and, to quote Bro-In-Law – a man of infinite resource and sagacity – when someone asked him why he’d just taken up learning Gypsy Jazz Guitar, “I decided not to wait until I was younger.”
I did sort of start learning about twenty years ago but, what with teaching full-time and having two children, practice never seemed to reach the top of the To-Do list. So the enterprise was shelved, pending retirement. Which is Now.
Snazzy plain blue Mao-style disposable trouser suit on – check.
Cannula thing in left wrist artery for radioactive tracer and splint applied to keep it firmly in position – check.
Thing in vein of right arm for regular taking of blood throughout and tape applied to keep that firmly in position – check.
All paperwork signed; permission given; off to the PET scanner we go, in search of possible brain inflammation. All in the cause of Parkinson’s research.
I clamber clumsily onto the scanner trolley, which is darned tricky on account of not being able to bend either arm. How the Plarchers manage to do all the farming and stuff with non-bendable arms, goodness knows!