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 →
“I dinnae ken what they’re doing,” says Josie.
“Ay, they’ve got it wrong,” agrees Jim. “We should go straight ahead here.”
The hearse is about four cars in front of us, just about to turn right at a road-sign saying Cemetery. In truth, I can’t help feeling that our best move is to follow. But what do I know? I’ve never been to Fife whereas Josie and Jim – BraveHeart’s siblings – grew up here.
DearHeart: Oh, they’ve got a penalty kick
Me: *watches ball sail between the sticks
DH: that puts them ahead
Me: *watches score go from 25:23 to 25:24 to 25: 26 to 25:27 to…
Me: But their score is just going up and up and up……
DH: I think you’re looking at the time.
I have so got a grasp of this game.
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.
“So, are any of you English?” asks Annaliese. There are a couple of dozen takers for the English Language tour of Lyon’s Old Town but we’re a pretty cosmopolitan lot. ActorLaddie and I mumble a bit. I suspect we’re not about to be congratulated on our Good Governance.
“I’ve been reading the news,” says Annaliese. “About Boris Johnson.” Everyone chortles – apart from us. Then the tour begins.Continue reading →
Our digs overlook the River Rhône although to get the full glory, you have to kneel on a table and lean out of the window. Here’s the view right now:
Not Seurat, I grant you, but, if it wasn’t for the houses in between, you’d be able to see the turquoise of the Rhône, behind which there is a sort of office/restaurant complex, behind which there is the Parc de la Tête d’Or. This is where we went today to lick our wounds – and it is magnificent.Continue reading →
“I’m afraid we don’t issue refunds on the Lyon cards,” says Eloise in Tourist Information.
Well, I’m not actually wanting a refund. But could you get the card cancelled so that she can’t use it? Or – even better- so that, if she tries to use it, the card explodes and covers her with indelible blue ink which, as it drips down her treacherous skin, tattoos her with the phrase “I am a thief.”
OK, I don’t say the last bit. But I think it really loudly.Continue reading →
Oh what a beautiful morning! We’re forecast for 33° later today – gorgeous drying weather; so the soundscape of birdsong and imaginary church bells (it’s Sunday) is currently overlaid by the romantic clunk of a pillowcase-worth of Lego churning away in the washing machine. (Other brands of construction bricks are available.)
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.