Out and about

We attended a rather formal do this week, in the shape of a lecture at the university with reception at a fancy hotel afterwards. It was a chance for me to see a bunch of old colleagues, and Marie tagged along to keep me out of mischief. I thought I’d dress up for the occasion so wore my best black socks with the velcro-strappy sandals that are by far the easiest shoes for me to get into. My dear wife (and her gaggle of sisters) have a down on men with socks and sandals, but nobody at the do commented on my choice of footwear, so there!

I was rather concerned about having to sit through about 90 minutes of speeches and lecturing first. The thing is that when I have sat for a bit I get this uncontrollable urge to stand up – sometimes after just a few minutes, other times I can sit like a normal person for an hour or more. Of course, when the urge grabs me I can’t just stand up quietly and unobtrusively. Oh no, I need to get a firm handhold, preferably on the chairback and ponytail of the person in the row in front of me, so I can lift-push myself upwards (with a forceful primeval grunt) and then start urgent pacing to loosen up my joints. Fortunately, the gods of something or other were with me – no urges to jump up, no twitching. My only problem was staying awake…

About the urge to move, I’ve been reading Oliver Sacks’ book Awakenings (the book behind the documentary behind the film) where he tells the stories of his patients who had an ultra-severe form of Parkinson’s brought on by the late effects of a particular type of encephalitis. The book is hardly a jolly romp (and is sadly lacking in car chases) but there are a lot of things I recognize, even at my fairly early stage. These patients are so extravagantly ill that it’s like looking at (some of) my symptoms blown up 1,000 times so they become really obvious and clear. And Sacks talks about the urge to move as something quite common, matched almost exactly and horribly unfairly by the inability to move of his ‘frozen’ patients. It’s as if the muscles that have been quietly spasming along with their barely noticeable tremors suddenly need to release all the pent-up energy in big and urgent exercise. An excellent way to draw attention to yourself in a large lecture hall, so I was very relieved to get through to the reception without making a spectacle of myself.

At the reception many people that I haven’t seen since shortly after my diagnosis last year came up to me and asked how I was doing. I tried out several answers that I thought might be socially acceptable (since few people want to stand in the middle of wine and nibbles with somebody else’s truth dripping all down their shirt fronts). I had a go with ‘Much better, thank you’ – a blatant lie in view of the progressive nature of PD. But since I have developed an uncharacteristic light suntan that was generally interpreted as signalling some miracle cure, no-one called me on my lie. I also tried out ‘Much better now that the medication is working’, which is a nice little half-truth since this ‘much better’ relies on me taking 26 pills per day at various times and in various combinations, with a catalogue of interesting side effects as I’ve talked about in earlier posts. My last variation was totally truthful, yet again manages to throw a sociable veil over daily life: ‘Thank you, much better than I was this time last year’, which is when I was sky-high on far too much morphine and not yet on PD meds. But it was nice of them all to ask, and I did enjoy myself.

After an hour or so of this I felt I’d done enough and talked to all those I wanted to catch up with, so I looked round for Marie to drag me away. And bugger me, she was nowhere to be seen. I checked inside the reception room – not there. Checked the outdoor area – not there. Started to panic, festinating my way with tiny, rapid steps round the main room again like some little lost boy – and then suddenly she was there again, having just been to the loo. I was so relieved I bought her flowers on the way home (an occurrence so rare its precedents can be counted on the fingers of a mountaineer with severe frostbite). This dependence thing has the potential to get quite disturbing for both of us, but I may just save that worry for another day.