Memories

JON: I’ve been meaning to write about my memory problems – but I keep forgetting. OK, when you have picked yourself off the floor laughing, try to imagine what it’s like to have no recollection of the recent past. It can make you quite paranoid at times – having no recollection of what happened last week, and no idea what plans have been laid for this week. And people (well, Marie) keep claiming that I have participated in discussions and agreed to sweeping decisions of which I have absolutely no recollection.

As a practical example: it was Marie’s birthday a few days ago. I had bought her a pendant in the shape of a string of DNA (you know: a bit of double helix – which happens to be the symbol adopted by Brights (born-again atheists)). Actually, when I say “I bought”, I actually mean she scoured the web for a version she liked, then ordered it and paid for it on my credit card – but it was my idea! It arrived in the post weeks ago and I hid it away somewhere safe.

After being prompted the night before, I managed to remember the birthday the next morning, but despite extensive poking around the deep recesses of my memory: could I remember where I hid the pendant? Not a chance, absolutely no recollection at all. Fortunately Marie had spotted it herself, hidden in plain view on a shelf in the garage, so was able to guide me to the bag – though I was still not one hundred percent sure of the contents when I gave it to her.

MARIE: We last wrote about memory issues in the post from 28 June, when the Parkinson Centre neurologist had just explained to us that Jon’s problems with remembering things were most likely related not to his memory going bad but to issues with paying attention. As I understand it, this is caused by an unfortunate interplay of two common symptoms. One is the erosion of ‘automatic’ patterns of movement so, for instance, unlocking a door or getting into a car is no longer something that happens with mindless ease, but something that must be planned and broken into its constituent parts of small, separate movements that can be done in sequence rather than simultaneously. The other is difficulty with multi-tasking, which means that Parkinsonians really do find it difficult to walk and chew gum at the same time.

What it boils down to is that Jon is easily distracted by the need to focus his attention on small physical tasks and thus does not pay sufficient attention to what goes on around him to be able to store it in memory. Even during dinner, where one might think he would be able to zero in on a discussion of next week’s programme, he may instead be grappling with the difficult wrist-twisting movements necessary to load a fork with spaghetti, or could be concentrating on chewing his food without biting his tongue, or planning how to reach for the pepper grinder.

This is a bloody nuisance, and a rather unexpected one. We obviously know better than to equate Parkinson’s with shaking (in fact, Jon has very little tremor), but much of what we heard and read initially about the disease lead us to think of it as a movement disorder with stiffness, slowness, etc. (of which Jon has much). It is becoming clear now that this is far from the full story. The movement issues may be more noticeable at first, but with them come a slew of related effects on mood and mentition – which may, for someone as sedentary as Jon, turn out to be the more troublesome symptoms.

Jon’s social life (and by extension, mine too) is also much affected by the disease, but that is a subject for another post – soon.

Typical Parkinson's

I saw my personal shrink for the first time a few weeks ago. He specializes in Parkinson’s – not the physical manifestations, but the mental ones. He described me to myself quite accurately (i.e. I am typical for a Parkinsonian). And although I claimed to be apathetic, and he argued that I suffered from a lack of drive (typical P). And much as I hate to say it he could be right, so my next claim is that it’s just a matter of semantics.

I’m also mildly offended to be described as typical – I’m special, me. I want the phrase “when you have seen one case of Parkinson’s, you have seen one case of Parkinson’s” to be true. Although I can now spot a fellow Parkinsonian from 50 paces – the slow shuffle, the stiff arms, the sticky feet etc. – I am still sure each and every one of us has our own idiosyncrasies.

I seem to oscillate between on the one hand claiming that I’m very, very sick, as if I’m not going to be believed, and on the other hand shrugging it off as “just one of those things” and trying to pretend there are no problems – but if I’m that healthy in mind and body what am I doing seeing my own personal shrink? (Actually the plan is to have part of the session as a couple and part to each ourselves, but I suspect the couple stuff will also be focused on me.)

The pills also have a large effect on my mood; I bounce from lethargic couch potato to pacing panther when I endlessly walk from one end of the living room to the other in the same way that animals in zoos trace out stereotypical behaviours. Shrink is on holiday so there will be a month between first and second visit, more than enough time to ponder my mental condition.

My physiotherapist is also on holiday, but to make sure I got no rest I had an appointment with the speech therapist, the first in 3 months. The good news is that she saw no change. I, on the other hand, have started having minor difficulties swallowing, and some cheek and tongue biting. Minor symptoms, I know, but worrying nonetheless – and I probably focus on them particularly because of background in dentistry and research on the mechanics of eating.

Last week we saw my neurologist who had the report from the evaluation at ParkNet. We mainly discussed drugs, dosage, timing, etc. It feels to me that we now have the correct drug cocktail, all the right ingredients, so all we have to do now is fine tune the dosage(s) and timing(s). We also had an appointment with the Parkinson’s specialist nurse, though it turned out she didn’t know why she was seeing me and neither did I. But we had a nice chat, and it was reassuring in a way – she was the first person to imply that I was doing OK and that she didn’t see any major deterioration.

It’s been hot and humid again. Marie was away for a week in Korea which I spent sweating and ignoring the blog, computer and cat. The cat, however, makes its wishes known with sharp claws, mainly demanding food, but sometimes angling for affection (a bit like me, really).
My next task is to organize the itinerary for our holiday – a week of random driving through the French country-side and a week in a remote cottage. I plan to keep this as unplanned and random as possible, but Marie has other ideas – though I think we can come to some kind of compromise (i.e. we may be spontaneous on Tuesdays and Thursdays, and for the other days we will have a detailed route map plotted into Mrs Tomtom – “At the roundabout, turn left”).

And now as I write I notice my typing is getting a bit blurry, so it’s pill time again ...