“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.”
A.L. takes off his pinny and joins me at the table where I’ve been wading through a small rainforest of forms. As always, I’ve left them till the last minute but, in truth, I’ve been involved in so many research things, I know what they are going to ask. Some will ask me if I have hallucinations, or incontinence, or memory problems. Others will ask if I can dress myself, wash myself, feed myself. Do I drool? Do I thrash about when dreaming? Am I in the grip of compulsive behaviour? Do I worry about the future?
Can anyone wade through the riches of possible Parkie symptoms and not worry about the future, I wonder? I’m reminded of Paul Mayhew-Archer’s brilliant response to his neurologist “of course I’m finding it difficult to smile – you’ve just told me I’ve got Parkinson’s.”
Anyway, having ploughed through some dozen forms asking me these questions several times in various winning combinations, I’ve come across something new – a form for ActorLaddie. Has he noticed any changes in my dressing/washing/drooling abilities? Do I talk to the trees? Am I away with the fairies? Am, in fact, an indicative vote short of a Brexit?
“I’ll leave you to it,” I say, before lurking to read over his shoulder. It feels a bit like an inspection – Ofjell? – and I’m rather relieved to see that his anwers match mine; I’m not about to be put into Special Measures.
“Actually, there is one thing I’ve noticed, ” he says. “Though it’s not in the questions.”
“Really?” I pause in my form bundling. “What?”
“You’ve started leaving cupboard doors open.”
“When you’ve opened a cupboard door, you often don’t shut it again.”
“Really. I’ve started noticing because sometimes I walk into them.”
It’s on the tip of my tongue to say “what you mean is that you’ve started walking into cupboard doors,” but that sounds a bit churlish as he’s just given me such a glowing Ofjell report. So I just think it, while assuring him that his feedback is important to me.
The research thing is same old, same old: walking up and down corridors, touching my nose, tapping my feet. Not all at once, you understand. No mention of cupboard doors.
And of course there’s the dratted Montreal Cognitive Test. I loathe the Montreal Cognitive Test almost as much as I loathe the European Research Group. If you’ve ever had any sort of neurological blip, it’s pretty certain you’ll have done the Montreal Cognitive Test, delighting amnesiacs since nineteen ninety – when was it? Draw a clock face and put on a time – always the same time. Name these animals – always the same animals. Remember these words – always the same words. Repeat this sentence – always the same sentence. How many words can you think of that start with this letter – always the same letter and, what’s more, the letter which means that you can’t use the first word that inevitably comes to mind. If only, as Paul M-A suggested, they changed the letter to ‘P’ then at least you could have some fun watching the Italian researcher attempting to spell pterodactyl or pneumonia or psalm.
To digress a little, I went to a new Patients’ Group meeting this week which has been set up to support a very ambitious research project. Actually, the group is officially called a PPI group – Public Patient Initiative or similar – so we were constantly on edge in case someone tried to mis-sell us insurance. It was our first meeting; most of the faces were new to me but it was great to meet up again with Jeannie who I’ve worked with on other committees and is really inspirational; among other things, a powerful testament to the efficacy of exercise.
They were an interesting mix of people and we quickly found common ground. When I get home, I tell ActorLaddie how we all loathed research questionnaires, we all feared going onto Parkinson’s websites in case of stumbling across Grim Imagined Futures and we all disliked how Parkinson’s is generally portrayed in the media.
I tell ActorLaddie this while I’m fixing a late lunch and a cuppa. I can’t help noticing that he is patiently, quietly, closing the cupboard doors which I’m leaving open. Because, as it turns out, he’s right about the cupboard door thing. But I’m telling you that in confidence, through gritted teeth: I do NOT want it appearing in any research questionnaire and will hold you reponsible if it does.
You have been warned.
One last thing…
I have a bit of a dislike for World Parkinson’s Day / Months and all the rest of it. So I cheered at Jon Stamford’s take on it in his latest blog. Well said, sir.