Am I me, and is that good?

JON: I’ve been looking back over my previous blogs, many of which are basically just diary entries – “last week we went to the zoo” kind of thing – but a couple of things stick out like sore thumbs. When we started blogging we promised to be strictly honest and I’m surprised to see just how honest we have been. Sure, there has been some editing and there is very little mention of our sex lives (or should that be sex life?) – not that there is much to tell, really, since the goat escaped.

Marie talks a lot about how I have changed, and how she initially raged (against the dying of the light) while I just grieved quietly. But have I really changed? While I am still me, am I the me that I was two or three years ago? I think not. I’ve asked friends if they have noticed any changes, and they all say no, though I suspect they are just being kind.

For instance, before I had PD I made lots of off-the-wall jokes. I might ask, apropos of nothing at all, “do you realize that 50% of doctors perform below average?”, or I might pretend to misidentify one of the stars in a film and say that “I’ve always liked Buster Keaton” when the actor is in fact Brad Pit. OK, perhaps these are not examples of stunning wit, but with a following wind they would raise the occasional smile. But this seems to have changed of late, now people look at me (more) strangely and I can almost hear the cogs whirling in their brains, wondering if that was a joke, or my brain failing.

It might partly be due to the change in status. Pre-PD I was the “serious(ish)” scientist with three degrees, a white coat and 100+ publications. Now, I’m that odd bloke who makes even odder comments, the one who sits in the corner and twitches. We have a friend who says “vroom, vroom” whenever he gets in a car – is he demented or just making a very poor joke? In his case the smart money is on dementia, but you get the point?

Another minor problem is that I seem to make weird statements. I start to say something, but then get ahead of myself and leave some of the connective words out. So instead of saying “look at the fat bloke on the TV”, I’ll just say “look the fat TV”, which makes sense to me but not to anyone else. (Of course, I’ve always been used to people not understanding me – I doubt I ever managed to explain my interest in the biomechanics of the temporo-mandibular joint (TMJ) to anyone – but this new incomprehension is more troublesome.)

Along with not finding words when I need them, I also switch words around and end up talking nonsense. For example this morning I was looking at the cat so asked Marie “can you put the cat on” when actually I wanted her to put the radio on.

And I am still having problems with short term memory which I suppose I must accept is unlikely to get much better. I forget appointments, forget when it’s my turn to cook dinner, forget to do things I promised (and meant) to do, ask a question and almost immediately forget the answer. It is really very annoying, for me and for those around me. And it is of course also hugely worrying because I can’t know whether this is more or less a stable situation or the beginning of a slippery slope.

So I get paranoid. A concrete example is our attempts to teach me to speak Danish. We had got into a routine where we did half an hour a day after dinner. Then some months ago the book was tidied away into Maries office and only reappeared when I recently asked about its whereabouts, but we have a yet to do anything with it. (OK, this is just as much my fault as it is Marie’s – but I have the excuse of being a Parkinsonian with auto-motivation issues.) Is dropping the lessons just an oversight, or is that we are both terrified that they will bring my memory issues to the fore?

(MARIE: I was horrified to read the above! I had really, honestly just tidied the book away when we were preparing for the first house viewings, and then forgot about it in the middle of much busy-ness. I had no idea that Jon was fretting that I might have hidden the book because I thought he was beyond learning anything new. And he never said a word, just sat there quietly nursing his fear. What would we do without the honesty of this blog?)

I manage to cope without speaking Dutch, but this is mainly because the average Dutch person speaks fluent English so there is very little incentive to learn (and Marie has learnt sufficient Dutch to cope with most situations). But if Plan A comes to fruition and we move to Denmark, I’m going to need to be able to at least understand some Danish (they are not quite so internationally minded there as in Holland). So far all I can really do is ask for a cup of tea – and I don’t even much like tea. But we’ve decided to restart the daily Danish lessons as of today so hopefully the Danish world of beverages will soon be at my feet. Now, if I could only remember what they call their beer …