Shake, dribble and drool

JON: New drugs – again. My neurologist has prescribed some new drugs, but for once these are not pills but patches (one per day) which cuts down very slightly on the number of pills I have to take each day. With luck I may stop rattling and again be able to sneak up on Marie and the cat.

If you are reading this, you have probably already read Marie’s last blog. She says that she admires the way I have taken the recent news about scary D, although she also finds it disconcerting. I just find it plain weird.

It turns out that I score around about normal in several of the tests. There is a reason for this (arrogant though it may sound): prior to the PD I had very high cognitive functions (i.e. I was pretty damn smart). And as Marie put it, the higher you are on the staircase when you start going down, the further you have to go before you hit the bottom. So now I’m down to rating as normal. Me, normal? That’ll take some getting used to.

Anyway, Marie pushed me into telling my children the results. First she wrote them, and then she made me ring them. Left to my own devices I might well have skipped that little task. I always worry that my speech will let me down on the phone, and the one thing I hate the most is sounding like a gibbering idiot. OK, you may think I should be getting used to that by now, but it’s something I’m quite ambivalent about. Is the embarrassment from appearing to be gibbering worse than actually being a gibbering idiot? And would anyone but me be able to tell the difference?

As you will have noticed from her post, Marie’s reaction to the neurological news was pretty strong. It’s as if a switch has been thrown, as if we entered the neurologist’s clinic as two healthy people, but left a few hours later as a demented patient and his carer. But I feel fine, you know, and the probability is that I will continue to feel fine. Sure, in time I may begin to shake, dribble and drool, but so far so good. The only fly in the ointment is the label on the box of patches which boldly states “for the treatment of dementia in Parkinson’s disease”. Not the most tactful bit of product information I’ve ever seen.

The process for both PD and dementia is one of gradual change. One does not suddenly become demented, it’s a slow process, with luck a very slow process. At the PD meetings we go to there are lots of others with PD. Some are doing OK and have been doing OK for over ten years, while others crumble as we watch. I plan to be in the former group.

A note on general ignorance: At my Danish language class, I did a spot of awareness raising. My target was a 17-year-old girl who just can’t get her head round the fact that there are chronic diseases that don’t get better ever. Girl of 17 to Jon: “So, have you still got the Parkinson’s, then?” Jon (rolling his eyes) to Girl of 17: “YES, of course I do.” Girl of 17: “Oh,” (smiling the bright, vacuous smile of the terminally normal), “perhaps it will get better on its own.” Meanwhile in the corridor, another well-meaning and misguided person is praying for me.

It’s all a bit much. Unlike in America, land of opportunity and an odd taste in outdoor reading matter, it seems you can’t even buy a decent machine gun here, presumably for fear the bullets might hurt some herrings.