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!
“I kept this for you,” says Mrs Jones and hands me a leaflet.
Mrs J it was who greeted news of my diagnosis by telling me that she knew several people with Parkinson’s “and they went on some lovely trips.” A rosy prospect, as you can imagine.
I look at the leaflet. ‘Fit for life,’ it’s called, and is illustrated with a photo of elderly people stretching and smiling. I read the back and laugh.
“What?” says Mrs J.
“‘Produced by Age UK’,” I read. “I’m not sure I’m ready for that.”
“And next on the line is Jellywoman. Jellywoman, what was your experience of being diagnosed with Parkinson’s?”
In truth, I have no idea what I said to Nicky Campbell, beyond reassuring him that only about 5% of PD is hereditary: apparently, his mother had it. By the time I was actually speaking live on air, I’d already talked about being diagnosed to the nice young man who’d answered the phone in the first place, and to the nice producer who called me back. Now all three spiels blend together under the general theme of ‘Don’t panic, Mr Mainwaring,’ which is the message I’d needed to hear on diagnosis.
This Friday, 6th November, there’s a quiet little bill coming up before the House of Commons which could make a massive difference to people who have, or who might get, cancer, MS, Altzhemiers or a host of other conditions including good old PD. So that’s everyone, basically.
“I’m a glass half-full person… I spill the rest.”
We laughed. A lot. “It’s an old joke,” said Tom Isaacs, a little apologetically. Well yes, it probably is. But given a whole new life from being told by someone with severe dyskinesia who is wrestling with their glass of water. A joke repurposed, in fact, and all the funnier for it.