18 July 2010

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!

1 comment:

eddie spaghetti said...

of the many problems my husband is dealing with is the overproduction of spit and the cramps he gets in his jaw. According to his doctor and nurse, there is nothing they can do for him. this part of the disease really ruins much of our day.