I'm not pregnant, I just have Parkinson's

JON: I’m fat. For the past 30 years or so, I’ve maintained a constant weight – around 80 kg, not fat and not thin, just convex enough to be cuddly. It never seemed to matter what or how much I ate or drank, my trousers always fitted without additional engineering such as belts or braces. Possibly I was one of those lucky people who fidget away any excess calories without even thinking about it, and certainly without thinking about exercise.

But now I’m fat. Not slightly overweight, but FAT. Actually, PD is supposed to make you thin as you shake, rattle and roll your way through life and dribble out half the food you try to eat. My problem seems to be that my medication is working rather too well at the moment

The burning (BBQing?) question is: how did I get from there (a handsome well-proportioned figure of a man) to here (a fat git with braces and a potbelly). One way to look at it is that I fought anorexia, and won. My first symptom was back pain which was treated with morphine which reduced my appetite – so during that period all I ate had to be high in calories because it was so low in quantity. Even so, I began to loose weight, so much in fact that my trousers became loose and I had to learn to keep a hand in one pocket to prevent serious trouser malfunction.

Trouble is, once we had the pain under control and the correct medication for the Parkinson’s, my appetite came back but I didn’t change my diet, or not quickly enough. At first this seemed a good thing as I grew back into my old trousers. But my appetite has just increased and increased and increased, possibly because of the PD drugs which are known to mess with people’s lusts so some become gamblers, others sex maniacs or shopaholics. Me, I’ve just become permanently hungry, and trousers have become a perennial problem. Once, after friends had cooked us a lovely dinner, I was hungry again within minutes and actually asked if they happened to have any cheese about the place! Marie was mortified.

Now one size of trousers is very, very tight and makes sitting down difficult, while the next size is too loose and won’t stay up. So, going for comfort, I experiment with belts and braces. The problem is that the belt buckle traps itself under the great abdominal bulge where it feels very uncomfortable. The other option is braces, but get them too tight and they pull down on the shoulder so you feel like you’re carrying a heavy rucksack (or size EE silicone breasts, perhaps). And just to add insult to injury, I can’t get a belt through the loops on the trousers without Marie’s help, nor can I fix my own braces to my trousers unaided.

I understand the appropriate expression is that inside every fat man, there’s a thin man shouting for more cake…

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.)

The Feminist revolution: a nightmare?

JON: Everything seemed to be going in the right direction, I was beginning to see the first tender green shoots of several trite metaphors, etc. But then I had to go and do the obligatory sick man’s shuffle of one step forward and two steps back.

Marie and I were away from home for a few nights and were forced to share a bed – which is allowed, we’re married with bits of paper and joint bank accounts and everything. But to return to the point: as is my wont I went to bed early, about 9:30, took my pills and was asleep within minutes. Mare came later at a more grown-up time.

Some time later, in the small wee hours of the night, I woke Marie by shaking her vigorously and lecturing her loudly on how she should join the feminist revolution. Several well-placed kicks from Marie calmed me down – until I was at it again, this time demanding equal rights to education for women. This time, though, I woke myself up to and I can distinctly remember saying out loud: “OH SHIT, it’s just Discworld, isn’t it” (which, for the uneducated / un-medicated amongst you, means Terry Pratchett’s series of comic fantasy/SF, with 60 million books sold so far).

The rest of the night was blissfully un-eventful for Marie, although I was kept awake (I thought) by noises off. “So“, I hear you ask, “is that an auditory hallucination or are you just pleased to hear me?” Well, some of it just sounded like someone walking around upstairs – but I should point out that we were in a bungalow. Spooky.

The whole experience felt like a return to the bad old days of constant sleepwalking and scary night-time hallucinations which I thought I’d put behind me when I came off Sifrol over a year ago. So why did it happen again, and why now? It’s possible that I missed one of my nightly muscle relaxants, but when I have missed one before I have just stayed awake, not gone under and acted out my dreams. Or is it quite simply that we disturb eachother so much that it has become physically impossible for us to share a bed (for the purpose of sleep, at least)? The worst-possible-case scenario is that the Ritalin, which does me so much good during the day, is beginning to cause problems at night.

So the next night I experimented by not taking my muscle relaxant, which caused the usual insomniac misery (although much less shouting). So it wasn’t a missed pill. Nor has there been any recurrence (that we know of) since we came home to each our separate beds, which there should probably have been if it was the Ritalin playing up. So it was most likely just the situation that caused it. Not great, but that at least we can live with and work around.

And back in Flatland under the thumbs of my many and varied health professionals, my neurologist treated me to an interpretation of the results of my sleep clinic registration (see the post of 24 January 2010). The results, not very helpfully, were inconclusive: it might be REM sleep disorder, and then again it might not. What the tests did show was considerable activity in various muscle groups during sleep, particularly in my muscles of mastication. Better known as bruxing, this is so common it's almost normal.

In a nutshell: I have slightly disturbed sleep, REM sleep disorder in quite common in Parkinson’s, I have Parkinson’s, so my disturbed sleep is probably caused by REM sleep disorder. The most common treatment is more of the muscle relaxants I’m already taking, so we’ll go with that for now.

One good point is that the neurologist explained that although REM-SD and PD are related in occurrence, they are not necessarily related in severity. Which means that as the PD gets worse, the REM-SD may well stay exactly the same. I am also pleased that the sleep clinic didn’t diagnose some other, unrelated unpleasantness such as obstructive sleep apnoea which I was rather worried they might leap on. So I guess that although I am unfit for work, I am at least reasonably fit to go to sleep.

Officially 100% useless

JON: Well, now it’s official. I said last week that all that remained of my assessment for disability pension was for some untranslatable expert to ring me to discuss my future. As it happened, I was in the shower when he rang, so instead he spoke to Marie. In fact, he had decided that he didn’t need to speak to me at all as I was such an evidently hopeless case, and that he was closing my case with a recommendation for full disability benefits without any future labour market reintegration efforts. All that now remains is for a third department to calculate the exact amount they will pay me, and then I have a mass of bureaucracy to wade through with a couple of insurance companies who should top up my benefits on the basis of this assessment.

But the decision is made, so essentially that’s it. Marie and I both feel kind of ambivalent about it. It’s a great relief that the long wait is over, and that no public servant miser is going to demand that I supplement a smaller pension by working as a part-time car park attendant or break-dance instructor. On the other hand, it is a mixed blessing to know the experts agree that there is not a single thing I can do that anyone could possibly want to pay for.

My psychologist reckons I shouldn’t feel like a reject but be satisfied that it’s much easier for the experts to award benefits to someone with a recognized disease such as Parkinson’s (expert diagnosis and crystal-clear prognosis) than to more common and more amorphous complaints such as stress or back pain.

Anyway, fuelled by Ritalin and in the spirit of working to discover what I shall enjoy doing for the rest of my life, I have taken up art with a decidedly lower-case a. A very early result is this composition of teabag splats. It may need more work…

And my buy of the week is an electric back massager (from OBH-Nordica) which is wonderful, viciously painful and very effective. It was also fairly expensive, but after a free grab pole and tricycle from the local authority, I reckoned I could afford it – and I’ve always thought I was worth it.

The massager works by slowly moving a set of large steel balls up and down (or round and round) the spine while another set massage the neck. It’s a good imitation of the sort of movement a masseuse would make, but not as gentle and with the added advantage that her fingers don’t get fatigued.

I’ve discovered that one can overdo it, though, so at the moment my back feels battered and bruised, but even that is better than the chronic pain I had before. On the whole I’m pretty pleased with my purchase and recommend it to anyone with back pain and a busy wife.

Benefits assessment

JON: The benefits department of the Dutch government will soon rate my level of disability, which in turn will determine my income for the next decade, so it’s a big deal. Normally you get assessed after two years off sick from work, but hopeless cases can apply earlier. And wouldn’t you know, my employer suggested that I apply early…

Plan A is to be rated 100% disabled and thus get the maximum benefit amount possible. The Dutch have an interesting system: if you are completely unable to hold down a normal job (what they charmingly call 70-100% unsuitable for work), you get a full pension and the system is very nice to you. However, if you are less that 30% useless, the state basically washes its hands of you and you’re entirely on your own financially. The middle ground is taken up by people who get a bit of benefit but not enough to live on.

The evaluation has been hanging over us like a rather dark cloud, so given the pretty hope-free prognoses from the many medics we have seen, it seemed sensible to start the ball rolling. That way, we will soon know what income we can expect, and whether I need to start a new career as a rent boy in Amsterdam (I wish I knew where that goat got to…)

I sent in the paperwork for my application some time ago, but nothing happened, not even a ‘thank you for your letter, we may get around to reading it some day’-letter. So we rang again, and again, and eventually we got an appointment. The delay was apparently caused by a shortage of doctors able to evaluate academics – which strikes me as odd since doctors are themselves academics so should all know what that involves.

Anyway, a few days ago we saw a rather nice doctor who (surprising for the Dutch) claimed to speak poor English. But she could understand it just fine, and as that exactly mirrors Marie’s abilities in Dutch (i.e. she understands, but doesn’t speak), we could set up a short chain of Chinese whispers: Doctor spoke to Marie in Dutch, Marie translated for me into English, and I replied in English. Well, in fact I got left out much of the time since Marie knows my medical history (and can remember it better than I can).

Since we’d had loads of time while waiting for the appointment to be made, we were compulsively well prepared for this interview. We had filled in forms supplied by the UK Parkinson’s association and in books, and had made up our own spreadsheets to list my motor and non-motor symptoms, medication use, appointments etc. The only thing missing was the brass band.

Using the forms is a kind if ‘symptoms bingo’ where I score quite high as there are few symptoms I don’t have to some degree (right down to the Parkinsonian earwax – and I have the photos to prove it). Not surprisingly, the doctor seemed to regard me as 100% disabled and said she would report that to the last evaluator, an untranslatable kind of labour market advisor. This leaves just one final hurdle where I have to talk to [untranslatable] who decides what work, if any, I am suited to doing.

Normally I would be invited to their office for this interview, but the doctor thought the result was more or less a foregone conclusion so that there was little point in me schlepping all the way to their office. Instead, she would recommend that [untranslatable] assesses my level of disability / inability over the phone. I expect the conversation will go something like this:

Me: Hello.
[untranslatable]: Hello, I am [untranslatable]. Do you think you are able to work at all?
Me: No.
[untranslatable]: OK, fair enough, that’s also what the doctor thought. Bye-bye.

Well, we shall soon know. It will be a major relief if we can finally put this hurdle behind us.