Category Archives: Parkinsons

303. Warriors in Lock-Down

Right now – Boxing. 

Alex holds up to the camera a notebook on which he has written the word ‘Boxing’.

Two forward, two crosses, two up.  And I’m looking for eight out of ten from you. I want to see eight out of ten for effort. Ready?

Ready, I say. Though as we’re all Muted, only the cat hears and she’s too polite to listen. The bell rings and we’re off, PD Warriors together, bashing the hell out of thin air, at a rate of eight out of ten for effort.

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299. Can I be of assistance?

Long, long ago in a blog far, far away (well, nearly two years actually), I told you about my final lumbar puncture on the Ambroxol drug trial. And I promised to let you know as soon as the results were out.

I hope you weren’t holding your breath!

About a year ago, we few, we very few – well, about eighteen – trial participants were called for a meeting to share the initial findings. This ‘Stage Two’ trial had gone well, we were told, in that they had ascertained that the drug was tolerable in the doses they wanted to give. Also that lumbar punctures had shown Ambroxol does cross the blood/brain barrier, reaching the relevant parts of the brain. This is what they were hoping to find. So that’s all good.

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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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283. All the right notes but not necessarily…

“I was just wondering – do you think it would be completely bonkers for me to take my Grade One?”

When I started having piano lessons, a couple of years ago now, I told Holly that I wasn’t even considering taking any exams. Why would I? Particularly with a tremor which, though generally mild and well-behaved, has been known to have the Mother of all Temper Tantrums in times of stress. Exams are stressful; piano exams need obedient hands; stress leads to disobedient hands; disobedient hands would make exams even more stressful. Even considering this would be illogical, Captain.

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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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273. Well, since you ask me for a tale of obsessive behaviour…

“There’s a woman who comes to all ‘The Bridge’ related events dressed as Saga – leather trousers and everything.  She even has the same car!” (Sofia Helin)

Now, I adore Detective Saga Noren  as much as the next person and would love her to end the series living happily with Henrik and his ghost children – though I’m not holding my breath. But there’s fandom and then there’s weird.  Reading interviews and blogs is OK; dressing in leather trousers and following the actor who plays her, borders on the obsessive.

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