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.
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.
“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.
I wasn’t put to the piano as a child. Refused the offer of lessons, apparently: as good a reason as any to invent time travel. But I’d really like to be able to play and, to quote Bro-In-Law – a man of infinite resource and sagacity – when someone asked him why he’d just taken up learning Gypsy Jazz Guitar, “I decided not to wait until I was younger.”
I did sort of start learning about twenty years ago but, what with teaching full-time and having two children, practice never seemed to reach the top of the To-Do list. So the enterprise was shelved, pending retirement. Which is Now.
I called into the nursery on my way home from work, full of end of term good-will. I’d get a Christmas tree up and ready for when ActorLaddie got back and we could start the holidays in piney perfection. The chosen tree had a lovely shape; plenty of needles, smelt of Christmas.
The kids helped me lug it up the stairs to the living room – this being when we had GrannyBorders installed on the ground floor. Decorations ready, festive ginger wine poured. We just needed to put the tree in its stand, take off the netting – and that’s when I found that it was too big for the bay.
Although I’m a glass-half-empty kind of girl, it has to be said that I have been extraordinarily lucky with my lot in life. I’m not stuck on a mountain in Iraq, nor in a refugee camp in Gaza. And when it comes to dealing with the everyday ups and downs, I do have kith and kin who are second to none.
Incidentally, don’t you think that ‘kith’ is a great word? Madam, you have greatly insulted me, so I am going to unkith you from Facebooke.
In my personnel days, I went to visit a colleague who was about to have her second baby. She’d obviously got it taped this time; everything seemed to be in place, down to address labels written ready for the birth announcements.
“You seem to be pretty organised,” I said.
“I am,” agreed PregnantColleague. “I’m just going to write a letter to myself.” I sipped my tea and waited for the explanation. “I had dreadful post-natal depression after Rebecca,” she went on. “If it happens again, I want something to remind me what’s going on and why. And that it won’t last.”