Showing posts with label stiffness. Show all posts
Showing posts with label stiffness. Show all posts

10 January 2010

Balancing acts


JON: Bah, Humbug to all my readers, and I wish you all the usual messages of despair and hopelessness that accompany the past season of enforced jollity. There, that’s my annual moan over and done with. Here, we celebrate Isaac Newton's birthday (25 December) with a meal of historically appropriate excess and complexity, and we are now sufficiently fortified to man the barricades for the coming year.

Coming soon will be my assessment by the ‘benefit people’ who will determine my level of disability and thus the size of the pension I will receive. I am of course hoping that they will find me entirely decrepit and of no use whatsoever to the world of work. (This, in my opinion, is not far from the truth, but is something I generally try hard to forget.)

However, at roughly the same time I will also need to be re-assessed as to whether I can safely be let loose with that modern murder weapon, the car. Here, of course, I shall try to impress all round with how marvelously well I function despite my little neurological problem. Quite a balancing act, that (such fun with Parkinson’s). As a first step I get to see a neurologist other than my regular, and then if he feels it necessary I get to take more or less a full driving test. When I took the test two years ago I passed with no problems, so I’m hoping all will be well again this time – and am feeling reasonably confident since last time I was suffering unpleasant side effects (mainly tremors) from the medications I was taking, whereas now my motor symptoms are pretty well controlled.

In fact, I imagine that from a distance you would not actually be able to diagnose me – closer up I shake a bit and have the occasional twitch, but it's much, much better than it was. Marie disagrees and thinks my rigidity would tip off anyone with a glancing knowledge of Parkinson’s, though luckily that should not be much of an issue in relation to driving. Anyway, if I can convince myself this is true then I might be able to convince the neurologist that I don’t need to take the driving test.

In fact I do very little driving, but to lose my license would be a pain, both for me (becoming less independent) and for Marie (becoming my constant driver). I’d be happy enough to be my own passenger as my main deficiency on the roads is that I am over-cautious so drive slowly enough to infuriate other motorists.

I’ll start the year with a plea. I have only just worked out how to add a hit counter to this blog, so I have quite a vague idea of how many and/or who is reading it. If you can spare a moment, add a comment or send me a short e-mail, just so that I know there is someone out there in cyber space.

MARIE: I should like to add a small rant to the above. It is of course entirely reasonable that Jon’s driving skills should be regularly assessed as the disease develops, and quite possibly an evaluation every two years is a sensible interval. It’s a fair bit of bother for us since first one has to go to the town hall to get the application form, then to the GP to get his notes on Jon’s condition, then send in the forms and be told to go see a specialist neurologist, then possible take a fresh driving test and then, at last, order the new license.

This all takes quite a bit of time, but one could argue that as Jon is too ill to work, he is not short of time. However, time is not all it costs. There’s a fee for the form, a fee for the neurologist, a fee for the test and a fee for the license, in total running to rather more than 100 euros – every other year. It strikes me as very unfair that the disabled, who have small incomes and no way to improve on them, and who are more dependent on cars than the fully able who can choose to use bikes or public transport instead, should be made to pay this special mobility tax. We are lucky to be reasonably secure financially, but I can imagine the extra expense can be quite a concern to many disabled drivers.

19 October 2008

Taking stock

In the long term we are all dead. Another safe prediction is that tomorrow is very likely to be much the same as today, so in the short term we seem to be OK – it’s the medium term we need to watch out for. As progressive neurological diseases go, PD is less nasty than some: not fatal of itself, but not a recipe for a bright future either.

A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.

I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.

(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)

Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).

So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?

In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?