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.

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.

Enough with the questions!

MARIE: We have just spent three jolly hours deciphering and responding to an 80 (eighty!) page questionnaire in Dutch about every aspect imaginable of Jon’s Parkinson’s. It sure is hard work being ill…

Seriously, though, this is a good thing. It is stage one of a thorough examination of the State of Jon which will be conducted over the next several weeks at a specialist Parkinson’s centre connected to the hospital he goes to. First you answer a million questions and solicit statements from all the different therapists involved (physio, psycho, the lot), then you (i.e. patient and partner, they insist on that) go to an appointment with a neurologist and a care coordinator where they go through your various answers and determine where there appear to be issues that need to be dealt with. Then an entire team of specialists are brought together to deal with these issues during a full day of consultations where you could be seen by physiotherapists, speech therapists, ergo-therapists, social workers, nurse-practitioners and any number of other experts. And lastly, there is another neurology appointment where recommendations are made and plans put forward for future treatments.

It’s crappy bad luck that Jon has got Parkinson’s, but if you’re going to get iot, what amazingly good luck to get it in Holland! Again and again we are bowled over by the efficiency, speed and thoroughness with which the health service works here.

So what do they ask about, then? Well, everything. For instance: have you ever fallen over? If so, how often? Where? How hard? In which situations? Do you feel faint first? Are you conscious throughout? Do you do anything to stop it? Could you do anything to stop it? Are you afraid of falling over? How afraid? Is your partner afraid you will fall over? Does the fear of falling over stop you doing activities you enjoy? Which activities? Is that a problem for you? Do you want to talk to someone about it? – I expect that you begin to see how easy it is to ask 80 pages worth of questions and still stay relevant to the matter in hand.

And these were the easy questions that could be answered on the spot. More time consuming was finding the names, addresses, phone numbers and e-mail addresses of every health professional Jon has seen in connection with Parkinson’s, listing every medication he has ever taken with precise dosages and frequencies, and micro-recording his every activity for several days for a reflective diary. But I really do think this will turn out to be time well spent. Watch this space.

JON: Since my last whine the sun has come out and all is well. Well, perhaps not ‘all’ but certainly ‘most’... well, more than last time I blogged, at least. In fact I’m feeling much better than I was, the sciatica is easing, I can sit almost normally, and I have a choice which side to lie on Most likely the sciatica has little if anything to do with the Parkinson’s; chances are it is just wear and tear and this old(ish) body slowly crumbling.

The high spot of the week has been filling in the 80 page questionnaire, with lots of comprehensive list of symptoms – on some pages I got a BINGO! when I could tick all the boxes: yes, I’m stiff; yes, I’m constipated, yes, I’m shaky; etc. etc.

But there were also pages where I ticked only a few boxes, such as where they asked about problems with eating and appetite. These I assume are symptoms that are yet to manifest themselves. Oh joy. The guide to the questionnaire did say very firmly that not everyone gets every symptom and that one shouldn’t get worried about the length of the lists of symptoms. Do I believe that, though? Bah, humbug!