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.
“It’s Mrs Jellywoman, isn’t it?”
I am at the gym (thanks for all the helpful hints – so far, so good), face to face with a jolly woman, probably in her mid-sixties. Though she might be ninety-eight but really, really benefiting from regular work-outs. She does look familiar but I can’t quite place her. I’m vaguely thinking Jacob’s nan; Jacob, whose suggestion for a word containing the ‘ee’ sound was “weed – like what you smoke.” Maybe, maybe not…
“It’s one thing joining a gym – it’s another actually going.” She was a wise bird, our old GP: retired now, alas. Of my pregnancy with the InfantPhenomenon, she said: “a summer baby, how lovely! You’ll be able to sit in pub gardens.” Not my first thought but she had four children so knew whereof she spake.
“If you wouldn’t mind filling in these while I prepare the injection – sorry, I know there’s some duplication, but that’s the NHS for you.”
We have the world’s loveliest pharmacist. He’s a great listener, great professional and bedrock for the community. When I walked into his shop for my first lot of Parkinson’s meds and promptly burst into tears, he was kindness personified. Plus he listens to Radio Four and can converse intelligently about The Archers. So I will fill in any amount of forms while he prepares my flu jab.