“Here, come and look at this thing on the Parkinson’s UK website,” I say to ActorLaddie. “They want volunteers for a drugs trial.”
“I can’t – I’m stirring the soup. Give me the highlights,” says ActorLaddie. We’re big on soup in our house.
“Well, they want people who live in London, recently diagnosed, in their 50s. You have to mail for details. It might be good to feel that you’re part of the solution rather than part of the problem, don’t you think?”
“Don’t you mean as well as part of the problem?” grunts YoungLochinvar. He has a way with words.
Recently, I’ve taken to tentatively browsing the Research section of the PUK website ready look away quickly if I see anything too scary; anything that might imply that PD is not all a barrel of laughs. I was attracted by a study wanting volunteers in their 70s to see if dancing made any difference. I was taken by the idea of lab-coated researchers with clip-boards tangoing among the volunteers, Dennis Potter style. Not for me, though.
I email for details of the drugs trial; they email back the same evening and soon the researcher and I are on first name terms and swapping soup recipes.
It’s quite a small scale study involving a weekly trek up to Hammersmith. They’ll be various tests including MRIs – a new experience for me. Mum’s had a few of those this year and tells me that the way to cope is to try and think of famous Dereks. Derek Nimmo.
The drug in the dock is called Deferiprone. They want to see if it slows down the progress of PD or makes any difference to the symptoms. Derek Jarman. It’s all to do with levels of iron in the brain. Apparently, we Parky types have too much iron in our brains. I wonder if they’ve considered sucking it out of the ears with magnets? Derek Jameson.
I now have the consent form to sign. The drug is currently being used to treat a couple of other conditions – which is reassuring. Derek Guyler. The pages about the insurance cover in case it all goes horribly wrong is less reassuring but I guess they have to include that. Don’t they?
Anyway, tomorrow I go for the screening to see if I’m suitable for the trial. Derek Hatton. I’m hoping that it works out as it would be good to feel that I’m actually doing something, rather than waiting for the condition to take its course. Derek and the Dominos.
ActorLaddie, who has a breadth of knowledge extending way beyond soup, tells me that one of the recognised stages of grief is Bargaining. Perhaps that’s where I am at the moment: if I take part in a study; if I keep really fit; if I do Pilates, then perhaps the condition will just bugger off.
Keep your appendages crossed for me tomorrow afternoon. And I seem clean out of Dereks. Famous Nigels, anyone?