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 →
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.
“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.Continue reading →
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.
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.
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.
Copenhagen to Lübeck: four hours. We’d reserved window seats to enjoy the scenery. On the map, it looks as if we’re going quite close to the coast and at one point will need to cross what ActorLaddie tells me is the Baltic Sea. I’m intrigued how this is going to work: on the way to Copenhagen, we crossed some pretty spectacular bridges and also went through some fairly long tunnels. I wonder if it’ll be a combination of these or whether we’re going to all be asked to swim across dragging the train behind us. I hope it’s not the latter as it’s raining and I’d rather not get wet.
“I was taking Entacapone … and it powered up hypersexuality. It was replaced with Tolcapone which fixed the job. I was pleased as I was nearly 60 and really could not be bothered.” (Person on PUK Forum)
Way Back When, I was lucky enough to have the chance to talk with BTMan: the first person I’d met with Parkinson’s who was neither mad nor dead nor both. Those of you who have studied my juvenilia might remember him explaining that some Parkinson’s medications cause, as an unfortunate side-effect, a reduction in impulse control. This can lead to excessive spending or gambling; or to over-eating; or to a greatly increased sex-drive, even in term-time.
“But you’ve been selling me a National Express ticket to Birmingham every weekend for months! Why not now?”
Mrs Travel-Centre is of a certain age and traditional build. Well, that’s not exactly how YoungLochinvar later describes her, but then he was speaking with the brutality of youth: a youth, moreover, already cutting it fine to get his coach to Birmingham.