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.)

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.

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.

Not all bad news

In my last post I had a little moan about feeling just a tiny bit useless. But it now seems that I am not such a waste of space after all.
(1) I got an invitation to give a lecture in the UK
(2) I got a phone call from a multi-national company asking for my advice on a technical issue

Yes, it is nice to feel wanted. I was happy to deal with (2) and am still considering (1). Perhaps a lecture is a bit much to ask of myself – the last one I gave, about a year ago, was quite stressful and not as polished as I would have liked – but I am considering asking if the idea of a lecture could be changed to more of a discussion session which I think would suit me better. But the point isn’t really whether it happens or not, it is the ego-boosting knowledge that They want it to happen.

I’ve also got a few things to look forward to, first a visit with my grand children next month, second a trip to France in the autumn, and as a matter of literary style I should have a third item which I don’t, but I’m confident that one will turn up. (Me, confident? It must be the drugs!)

Not only that, but also many and varied health professionals have been calling up to make appointments to see me at home, as a follow-up to my three-day evaluation at the Parkinson Centre last month. ‘At home’ has a nice Victorian-afternoon-tea ring to it, does it not? However, letting hoardes of white-coated men and women know where I live sounds rather less fun. But useful, I’m sure.

So, now all I have to do is determine the optimal dosage regime for my pills, attend an average of two therapeutic appointments a week for the next several months, and work out the Byzantine regulations governing disability pensions in the UK, Netherlands and Denmark. Plus write a food science text-book, vacuum the floor, tidy my room, etc., etc.

To be honest, I think the main reason I’m feeling more upbeat is that I’m taking a higher dose of L-dopa. As a result, I have more energy, less muscle pain, less stiffness, better focus, etc. Maybe there is a downside to taking a high dose, but just for now I think any price is a price worth paying, I’ll discuss mood issues with my shrink, though, as I am rather handily seeing him (her?) for the first time this afternoon.

The bin

JON: Another busy week in flat land. First I had a meeting with my boss and a guy from Human Resources where we assessed the chances of my returning to productive work from my employers’ perspective. In brief, not a snow ball’s chance in hell

The next day brought a visit with the health insurance company’s pet doctor who again rated me as 0% fit.

So there you have it. I’m past it, superfluous, outmoded, passé, redundant, over, unnecessary, not fit for purpose, rejected, dejected and pointless. What do I do now, what do I do next? And will I be able to afford to do it, whatever it is? The rules that determine what sort of benefit I might receive seem Byzantine, but with luck and a following wind all should come clear in the next month or six.

The meetings went entirely as I had expected, so my reaction to them has come as a bit of a shock. This is the outcome I want - I want to get closure from a difficult situation with work, I want to get a disability pension, I want to have this whole process over with. The only snag is that now the opportunity has arrived I feel labeled. I was OK with ‘he’s been off work for a lo-o-o-ong time because he’s got Parkinson’s, poor sod’. But ‘he’s on disability with a progressive neurological disorder and will probably never write another piece of software, never design another experiment, and soon may no longer be able to put on his own socks’ – well, that is going to take a bit of getting used to.

I need to say to myself 10 times a day: ‘I’m a guy with Parkinson’s, and its OK, and today will be the best day of my life’ – which is true, because it’s all downhill from here. But if I say it quickly enough, I may not notice the last bit. Perhaps I am actually ready for some happy pills...

MARIE: If it wasn’t for this blog, I wouldn’t know half of what goes on inside Jon. I ask – open questions, searching questions, leading questions – but much of the time the only answers I get back are ‘perhaps, a bit’ or ‘nah, not really’ or words to similar un-informative effect.

Like earlier today, when I had a go at Jon for not helping out more around the house, saying how unfair it is that he gets to lie in bed and listen to the radio while I tear around the place with my mop and duster. And then I discover in his blog text that while I was complaining about the minor inconveniences of my day, he was sitting there quietly feeling that his entire life is being thrown on the scrapheap. How sensitive and supportive was that?

One more ‘gift’ of Parkinson’s: you get a lot of practice so you end up good at forgiving. Today I am on the receiving end.