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 →
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.
“Now, I have to tell you about the possible complications,” says the Good Doctor. “These are incredibly rare: I’ve done many, many lumbar punctures and no-one has ever had a problem but, legally, I still need to tell you.”
“Can I say that I’d rather not know?” I ask.
“I’m afraid not,” the Good Doctor tells me.
“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.
This Friday, 6th November, there’s a quiet little bill coming up before the House of Commons which could make a massive difference to people who have, or who might get, cancer, MS, Altzhemiers or a host of other conditions including good old PD. So that’s everyone, basically.