Words, words, words

JON: I’m not 100% how it came about, but last week I found myself giving an interview about my exciting life as a food scientist to a journalist from the Daily Telegraph’s ex-pat edition (not a “real” paper, but an electronic version). It’s can be read here, if anyone’s interested. It’s not meant to be taken too seriously, but Marie and I have grabbed the opportunity to pitch another article to the same journalist on the delights of being long-term sick in a foreign land, as viewed through the prism of Parkinson’s. When (or if?) this second article comes to press/to pass, I’ll let you know.

Giving the interview took about 40 minutes, so what, I hear you ask, have I been up to the rest of the time? I’ve been buying big boys’ toys, and great fun I have been having too. Pride of place goes to my android smart phone which I have mentioned before – this gadget is so complex it took me 3 days just to work out how to switch the damn thing on… I’m now in the process of learning how to program it, and mostly failing. Actually I think I’m doing rather well, although I should give most of the credit to the extra dose of Ritalin I’ve been taking since our latest consultation with the psychiatrist – it really helps my concentration. My objective with the phone is to develop an application to monitor my tremor, twitching and general activity levels over extended periods of time. I’ll keep you up-to-date with my progress (or more likely lack of it), so watch this space, but don’t hold your breath.

In fact, the Ritalin has given us an idea for another article, one we will write ourselves and try to get into the magazines of both the British and the Danish PD associations. Because it appears that I am a bit of a trailblazer here (which sounds much better than a hapless guinea pig, don’t you agree?) since the use of Ritalin to treat motivation/apathy problems in Parkinson’s is very new and not much reported on. Both my psychiatrist and my psychologist have assured me that my personal experiences will be of interest to the professionals, and I hope an article could also put ideas into the heads of impassive people with Parkinson’s and their desperate partners. Ritalin has certainly done wonders for me – I seriously doubt that I’d be doing any of things I’ve written about here (including writing the blog at all) without my little magic pills.

Invisible illness

MARIE: There was a segment recently on BBC News about a campaign to educate people about dementia, so they did an interview with an Alzheimer’s sufferer – a pleasant-looking woman in her fifties, who gave her answers unflustered and in full, grammatical sentences (not easy on live TV, I should think). One of her points was that because she generally appears completely ‘normal’, people around her don’t realize how much the disease has affected her. As she said: “You can’t see that I can’t remember things, that I can’t count money, and can’t read a book”.

Yet even after she had said that, I was still surprised to learn at the end of the interview that she had recently stopped living with her mother and had moved to a care home. Nobody lives in a care home unless they have to (however nice a home might be, it is still a very expensive way to lose your privacy), so this really brought home her point: this disease can be so far below the radar that it remains invisible even after you’ve been told that it’s invisible. How can such a well turned-out and articulate woman be living in a care home? Because appearances can be deceptive, that’s how.

And as it happens, Jon and I had discussed just that point the night before. In fact, we had started out talking about this scientific textbook he is supposed to be writing with two old colleagues, and about which he has frequently moaned and procrastinated in his posts. The manuscript is contracted for delivery at the end of the year, so if it’s going to happen at all, then it’s got to start happening quite soon. So, decision time.

Jon’s co-authors are both busy people, and I suspect that perhaps more good intentions have been shown than actual work done. And I further suspect that they suspect the same of Jon, which is perfectly reasonable as he has not said anything to the contrary. But the fact of the matter is that Jon’s ‘invisible’ illness means the job is almost certainly beyond him, and although it has been a painful process for him, he now thinks it would be a relief to drop out of the writing and focus instead on smaller and more manageable projects.

‘Everybody knows’ that Parkinson’s is all about shaking, right? Wrong. Jon has very little tremor (except when stressed). ‘Everyone’ also knows that Parkinson’s is a motor disease, right? Wrong again. Although Jon has motor symptoms (rigidity in particular), his main symptoms are to do with fatigue, poor concentration, inability to multi-task, and poor response to stress.

Because everyone can see that Jon is doing reasonably well physically, and expect the disease itself to be mainly physical, nobody actually understands how much it affects him and his life. Nobody can see how hard he has to work to concentrate enough not to have forgotten the beginning of an article by the time he gets to the end. Nobody knows see that it takes him the best part of two days to produce a blog post. Nobody realizes that even the most routine practical task becomes a major undertaking – for instance, he used to do all the vacuuming but has had to give up because rigidity means he can’t bend to clean under tables and beds, back pain means he needs a half-hour lie-down after vacuuming one room, poor balance means he can’t walk backwards (which I now realize is what one does when cleaning the floor), inability to multi-task means he can’t lift something with one hand and vacuum under it with the other, and fatigue means that if he nevertheless persisted he would completely wiped out for the day.

But he looks fine, so people think he is fine. When we see friends, Jon pops an extra pill so as to enjoy the evening more, so he usually acts fine too. And of course he only calls up his co-authors when his drugs are at maximum effect, so he performs just fine – at least for the duration of the phone call. There is no way that they can be expected to know that Jon’s invisible illness is stopping him from writing his chapters.

So he’s going to have to tell them. And they are going to have to believe him, even if they cannot actually see the issues that are keeping him from holding up his end of the writing, and perhaps think they would be doing him a favour by encouraging him to stay in the game. I didn’t realize how badly affected the woman with Alzheimer’s was until she said she was living in a care home. Maybe Jon has to point out that nobody receives permanent disability benefits unless they really are unable to do their job anymore.

(BTW, Jon sees all my posts before they are uploaded, as I see all his. He approves of what I've said here, and actually encouraged me to write it.)

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?