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.
Back bruised … probably more comfortable without the dressing…
But I waved aside the lumbar puncture FAQs … this is my third, after all … and now I can’t remember how long you need to keep on the dressing.
It’s probably not very long. I’ve already ripped off the dressings from my arms; bruising up nicely, I see. The back’s just a puncture wound, like my arms, isn’t it? So I probably could take off the dressing now; almost certainly could take off the dressing now.
Now, I want you to squeeze the balls between your thighs. Some of you have got small balls but that’s ok – they’ll work just the same…
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.
What with Manchester and London Bridge and elections, I’ve been tiptoeing around social media of late, in an attempt to avoid the slabs of pure venom which are scattered amid the good stuff. So, it was only this morning that I hit upon a post sharing the shattering news that one of my heroes – Tom Isaacs, president and co-founder of the Cure Parkinson’s Trust – died last week. His passing was, apparently, “unexpected and swift”. He was just forty nine.
“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.
We were nearly late for the appointment. Couldn’t find anywhere to park. The only spaces near the hospital were for wheelchair users – don’t you think they could be further away? After all – they’ve got wheels.
So, the professor got me to walk up and down a bit and prodded me and said ‘yes, that’s Parkinson’s.’ My wife said ‘how can you tell just from that?’ The professor said ‘well, there are other signs too. Your handwriting has got very small, for one thing. And your facial muscles seem a bit frozen – you seem to be finding it difficult to smile.’ ‘Well, that could be,’ I said, ‘because you’ve just told me I’ve got Parkinson’s.’
“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.