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.
Margaret played first clarinet and collected the subs. In truth, we barely knew each other; I mimed with the second flutes and we rarely rubbed shoulders with our reeded sisters.
But she sent me an email in June 2012 which meant a lot to me at the time and still sits in my Parkinson’s folder, in case of wobbles.
This time, we said, we are definitely going to take Considerably Smaller Suitcases.
Over the last couple of weeks, we’ve been planning our second Grand Tour. Autumn come she will and we’ll be hopping on and off trains with gay abandon, clutching our trusty Interrail Passes and Considerably Smaller Suitcases.
“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 was taking Entacapone … and it powered up hypersexuality. It was replaced with Tolcapone which fixed the job. I was pleased as I was nearly 60 and really could not be bothered.” (Person on PUK Forum)
Way Back When, I was lucky enough to have the chance to talk with BTMan: the first person I’d met with Parkinson’s who was neither mad nor dead nor both. Those of you who have studied my juvenilia might remember him explaining that some Parkinson’s medications cause, as an unfortunate side-effect, a reduction in impulse control. This can lead to excessive spending or gambling; or to over-eating; or to a greatly increased sex-drive, even in term-time.