If it’s true that we are but toys for the Gods, then my sister-in-law is definitely their Etch-a-Sketch.
I guess you could say that it all started with the Golden Giraffe.
Tasteful, or what? One of my brother-in-law’s finest creations: essence of plastic giraffe, with an artisanal wooden mount and golden overtones. Such simple beginnings; such magnificent results.Continue reading →
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.Continue reading →
Eek, the pressure!!
When I first started writing this blog back in October 2012, it was oh so easy to find things to say. My friends and colleagues, on the whole, knew as little about Parkinson’s as I did and seemed interested in walking the journey with me. The hardest thing about starting the blog proved to be taking the actual Jellywoman photo: my lovely colleague Amy and I struggled for ages with tubs of Hartley’s finest strawberry flavour and various playdough accessories. It turns out that jellies are not as stable as one might think and the resulting grizzly mess of plastic limbs and collapsed gelatine suggested a particularly obscure episode of Endeavour.Continue reading →
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.Continue reading →
It seemed so straightforward when Helen explained it yesterday.
I’m to wear this watch-type thing which tells me the time – so, in fact, a watch – but it also collects data about sleep patterns. A bit like my FitBit but much clunkier, less useful and a horrid institutional grey. I’m to wear it continuously for two weeks, day and night, and then send it back in the prepaid Jiffy bag together with the sleep diary. In a year’s time, they’ll call me back and I’ll do it again.
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.
“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.”
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 →
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.
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.