High spots

JON: To a dentist like I was, a high spot is the annoying bit of extra filling material that prevents your teeth from coming together, a bad thing. But to normal people it means something rather good, and as it happens a number of good things have happened for me recently so the last few weeks have seen a series of ‘highs’.

As you know, I’d been invited to chair a session at the Food and Oral Processing conference (FOP). This may sound a bizarre topic, but all sorts of fascinating people crept out of the woodwork – academics studying the mechanics of chewing and swallowing, people from industry who wanted to know how to make food cheaper, more nutritious, healthier, etc., and clinicians who treat dysphagia which is an inability to swallow caused by stroke and other neurological deficits – such as Parkinson’s, for instance. For me, the high spots were several superb sessions from a clinical specialist in dysphagia from whom I learned more in a 30 minute chat than I had in the previous 12 years of studying oral processes. So far I have no swallowing problems, but give it a bit longer and these issues may well become a bit more personal.

On the PD front, I found that sitting still for sessions of 3 hours at a time can be hell. So I missed a few of the papers, and had to leave the room during a presentation once or twice. I spent a lot of time walking up and down corridors trying get my muscles to work in unison. But I had my walking stick as public proof of my state, so no one complained and I didn’t feel at all embarrassed. Still, I had to increase my drug dosages and even then I spent far too much of my time OFF when I really ought to have been ON, but with an audience of neuro-this and neuro-that, people were very kind and understanding. Most of them worked out my diagnosis on their own and everyone had a pretty good idea of what Parkinson’s is and so understood the concepts of being ON and OFF.

I also noticed that when people asked me politely ‘how are you’, I tended to give them my full life-history which was perhaps slight overkill. I suspect this self-absorption comes from having such a time-consuming and life-changing disease, although it could also be that I have simply turned into a boring old geezer. I prefer to blame the PD.

At the end of the second day was the conference dinner which was another high spot. I sat between a world famous neuro-physiologist and one of my personal heroes, both giving me advice on PD. I was ON for most of the dinner but I was still in bed by 10:30. In the old days we would have talked till 3 o’clock in the morning and had too much to drink. I can’t do that any more, but I still had a fantastic time.

After the conference, I stayed on and visited family and friends for a few days which was great but pretty exhausting, before dragging my weary body and surprisingly heavy suitcase to the airport. By then I felt 100% shattered, I’d run out of pain killers, and was definitely OFF, but again I had my walking stick and people were kind. Normally I’d have made my own way home, but I felt so bad that I rang Marie and asked her to collect me at the airport. Had she not, I might still be stuck somewhere in the underbelly of Schiphol Airport, a quivering jelly with the IQ of a concussed bee. Nothing that a few days of home comforts couldn’t cure, though, so I’m back to my particular brand of normal and just feeling really quite pleased with myself for having been well enough to enjoy the trip so thoroughly. Oh, and look what I found at the supermarket!

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.