“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.
I head into After School club to donate some cakes left over from a playground sale of … well, cakes. We’re raising money at Thrush Woods to sponsor Faith, who’s running the London Marathon next week for Parkinson’s UK. A couple of mixed infants skip up to me, arm in arm.
“Have you still got Parkinson’s?” asks one.
“OK.” And they skip off.
“It was normal for people over thirty to be frightened of their children. And with good reason…”
(Orwell – Nineteen Eighty-Four)
“Time for our news books – I want you to draw me a picture of something that you did at the weekend and then – using your sounds – to have a go at writing a sentence or two underneath.”
(Every teacher of young children, everywhere.)
In truth, I’m rather dreading today.
I’m writing this blog on the train heading up to Imperial College where, in the name of scientific research, I’m due to have a couple of brain scans. One is a regular CT jobby, which will be fine. It will last about half an hour in all but they do it in short blasts – ten minutes at the most – so you can wriggle in between. There are pretty good headphones and cleverly placed mirrors so that it’s not claustrophobic. I’ll adopt Ma’s trick of trying to think of people with a particular first name. In honour of Wolf Hall, I’m going to start with famous Anns; and then Henrys.
The other is a vastly expensive PET scan which involves being injected with some radioactive stuff and then having to lie still for an hour and a half while they attempt to locate your brain. I’ve done it once before, you might remember, and attempted to make the time pass by listening to an Agatha Christie, though I did drift off to sleep in the middle and woke up as Hercule was revealing who had dunnit, though what they had dunn is a mystery to this day.
I did eventually get sent a photo of my brain with all the radioactive bits glowing. InfantPhenomenon suggested I took it into school and asked my class for suggestions about how to fix it, as a D and T project. I can’t say I’m actually looking forward to the PET scan but I guess this, too, will pass.
No, the thing that is making me anxious about today is being given levodopa – that’s the dopamine substitute – which is going to happen part way through the day, as they need to measure some things before and after taking the drug. Until recently, I took a small dose of levodopa three times a day, in the form of a drug called Sinemet. It stopped my tremor but at the expense of feeling a bit grotty during the period when the drug kicks in. So I decided to see how I was without it, and found that – at the moment, at least –the symptoms are less troublesome than the side-effects.
However, as part of last week’s assessment for this trial, I was given a substantial dose of the stuff and it hit me hard, especially on the journey home. I’ll spare you the details but if you’ve ever felt nauseous on the Central Line in the rush hour, you’ll share my pain. Just to say that I am in mourning for my hat. I loved that hat.
Everyone ignored me, of course. It reminded me a bit of the time when, sitting in a rather hot Quaker Meeting House, I saw the elderly lady opposite gently slide to the floor. Her neighbour rested her head on a nearby hassock and we all continued to seek the Inner Light.
I’m at East Acton now. Deep breaths. Ann of Cleeves. My Aunty Ann. Ann Widdecombe…
I am now on my way home, pecking out this paragraph with one hand; the other being rather dramatically bandaged up where I had an arterial cannula put in it. The remaining wound will, I am assured, be no trouble at all. Unless the clot gets knocked, in which case I’m under instructions to raise it in the air whilst pushing down hard on the wound and getting myself to A and E.
ActorLaddie came up to meet me and has brought with him a plastic bag, as a hat substitute. It’s a little loose round the ears.
I’ve been invited to take part in other research study.
Long-term readers – those who haven’t left me in a huff because I missed last weekend’s blog – what can I say? – I was in bed a-coughing and a-sneezing and a-feeling vastly sorry for myself – you wouldn’t have wanted to read it, anyway; it was probably infectious – tell you what, I’ll get a note from my Ma who kept sending around lemons – anyway, those readers who are still with me, despite my punctuation and tendency to digress – those readers might remember that last year, I had a very expensive brain scan.
I’ve told you before about my Great Uncle Stan. Mind, it was two years ago, and you’ve had a lot on, so let me jog your memory.
Great Uncle Stan kept a fruit and veg barrow on the Northcote Road. During the war, he spent a lot of time at my Nan’s; once managing to sleep right through an air-raid and waking up to find himself covered in glass from the shattered window beside him. He had a glass eye which he used to take out at night and put in a jar besides his bed, terrifying my Ma – a child at the time.
Equally terrifying is my memory of him, sitting in the corner of a mental institution in the 1970s. He shook uncontrollably; had no idea who we were; couldn’t communicate. He has Parkinson’s, the nurses told us.
I’ve got it cornered.
The Still-to-do List is down to one sheet of paper; the accumulated detritus of my years at Thrush Woods has been herded into a corner of the ICT room and sits tamely waiting to be sorted. I’ve found no untaught children stacked away in boxes, so it looks like I’ve got away with it again.