Category Archives: Research

291 Swipe right

We’ve been given Persona 3 to look at. He’s 41, single, works in IT. He likes sport and he drives. He’s not much of a reader, likes to travel and is umbilically attached to his phone. He doesn’t want anyone to know that he’s just been diagnosed with Parkinson’s. Especially not his mates; especially not his work.

Our task now is to figure out what would help young PeeThree get to grips with his diagnosis. Apart, that is, from a cure, which would obviously be everyone’s first choice.

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287. Behind closed doors…

“Hey, there’s a questionnaire for you here.”

“Huh?” says Actor Laddie.

“I’m doing these questionnaires for tomorrow’s research thing and there’s one headed “For Partners/Carers”.  So, I guess that’s for you.”

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286. The Incurable Optimist

So, last night we went to see Paul Mayhew-Archer’s one man show: Incurable Optimist at the Soho Theatre.

We’ve seen Paul in action a couple of times before at Parkinson’s UK benefits: firstly at the Comedy Store and then again at the Royal Albert Hall, d’y’mind. Both of these were quite short turns but subsequently Paul has worked up an hour’s show which he took to Edinburgh last year. Continue reading →

285 #TomsVision

As soon as the words were out of my mouth, I realised that I’d been tactless. The last thing Tom needed, being, as he was, in the grip of dyskinesia (linked to Parkinson’s drugs; makes you move uncontrollably; just awful) and also having a conference-ful of important people to talk with; I’m sure the very last thing he needed was for some fool of a woman asking for his autograph on her copy of his book.

But Tom Isaacs had been a hero of mine, ever since I’d read “Shake Well Before Use” a couple of months earlier, and it was the first time I’d met him, and he couldn’t have been more warm and welcoming. Basically, I was starstruck. Still am, really. He even apologised for the writing being shaky! Him. Apologising to me. Good grief.

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281. Euston Station made me shiver…

Heading for Euston Station … TFL app … will my train journey home be any easier than the one up?

Coming into town, the combination of an unexpected chill with totally unforeseen leaf fall (in Autumn – who knew?) led to both local lines grinding to a halt. Fortunately ActorLaddie swung into action and ubered me to a tube station. Lunch with InfantPhenomenon made on time.

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279. Now we are six…

As a novelist, says Anna Burns, her job is “to show up and be present and attend. It’s a waiting process.” She “just had to wait for my characters to tell me their stories.”
(Interview by Alison Flood in The Guardian, 16 Oct ’18)

This obviously worked for Anna Burns as she has just bagged the Booker Prize with her novel Milkman.

I, however, have spent a lifetime waiting for characters to turn up and write themselves into a book but they haven’t done so yet and I’m rather starting to fear they never will. I go to bed having put out my finest stationery but masterpieces come there none. Not so much as a shopping list; not so much as a tweet. Perhaps the characters have used up all their best ideas writing other people’s books. They have no more twists.

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270. I got my friend an elephant for his new room. He said ‘thanks’. I said ‘don’t mention it.’

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.

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268: I’m a lumbarback and still OK….

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.   

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264. Good times never seemed so good…

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.

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262. A Jelly Miscellany…

It’s been how long?  A month?  Surely not…  Oh dear.  Let’s catch up then.

Back from our travels and plunged into getting the living room decorated ready for CarpetMan to do his stuff last Monday.  We’ve been working on this since the spring but with a week to the deadline, still had the fireplace to tile.

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