Why me?

In some of the blogs we follow and in several of the autobiographies we have read, people with PD struggle with the question ‘Why me? What did I do to deserve this? Is this some kind of punishment or test?’ There is clearly a religious element to these questions, an idea of a supreme will or organizing principle that ensures we each get what is coming to us. The faithful may leap intellectual hurdles and engage in logical contortions in order to explain why their god would put them through something like Parkinson’s, and yet come up with an answer that neither satisfies nor enlightens.

Jon and I, though, are strict atheists. We are quite convinced there is no higher intelligence up there (or, indeed, down there) which takes a particular interest in us. Jon hasn’t got Parkinson’s because he’s been a bad boy, and I haven’t got a sick husband because my soul is ripe for trial by fire. So why Jon? Because shit happens, and that is essentially all there is to it.

However, there is also the scientific question ‘why me?’ which has a hard time with the idea of idiopathic Parkinson’s, i.e. the version of the disease that is not hereditary or caused by drugs. Parkinson’s without a cause? Come off it. Of course there’s a cause, we just haven’t discovered it yet. There is a great deal of research going into discovering what causes Parkinson’s-without-a-cause, with various genes being singled out as possible areas of weakness, and various chemicals suspected of being contributory triggers. This is evidently highly complicated stuff and the answer likely to be equally complex, an extreme example of Occam’s lady shaver.

A scientist in a programme we saw explained that he and his colleagues think the answer involves some people being genetically vulnerable to developing Parkinson’s, but that they only actually become ill if the disease is sparked off by some outside influence – in other words, he said, ‘genes load the gun, but environment pulls the trigger’. Finding out what causes Parkinson’s would evidently be immensely helpful in the effort to prevent or cure the disease, instead of being stuck with just treating it as we are now.

Scientists are, in one important sense at least, professional optimists. They have to find financial support for their research projects by convincing superiors and research councils and charitable foundations that their work will lead to significant advances towards some desirable goal. I suspect this could be the real reason that every book about Parkinson’s we have ever read, no matter when it was published, predicts that we are only about five years away from a major breakthrough in treatment or cure. Sooner or later it will be true. Wouldn’t it be great if that turns out to be 4 ½ years ago?

Time and its uses

JON:
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.

MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.

Obsessions

When we were in England a few weeks back, I made a serious tactical error. Jon wanted to buy the third season The West Wing on DVD (he has watched it sporadically on TV), but I discovered that it was a vastly better deal to buy a box set of all seven seasons. Which we did. It turns out this box contains no less than 154 hours of viewing pleasure, and I have hardly seen Jon since he tore the cellophane, he’s been stuck like a limpet to the TV. One-hundred-and-fifty-four hours. That’s actually slightly more than the average month’s work.

His excuse is that he’s had a bout of sciatica, something that troubles him at irregular and (so far) rare intervals. There were several days when moving was clearly pretty painful, so fair enough he spent time immobolized in front of the square nanny.

And I do understand this kind of temporary but engulfing obsession. When I get my hands on a good computer game, I lose control completely. I don’t sleep, I don’t work, I don’t eat (hm, perhaps I should play more often…). And I also appreciate that it’s hard enough to keep active despite Parkinson’s, so when some other insult is added to the PD, fair enough that Jon just wants to curl up and pretend he’s away with the Presidential advisors scoring carefully-scripted points. But I do reserve the right to miss him until it’s over.

Meanwhile, I have had my own little obsession to feed. We had an estate agent round the other day – the first concrete step in what I expect will be a labourisous journey to a stair-free home – and while she was generally kind about our house, she did have a few suggestions. Which essentially, and very sensibly, involved some serious un-messing and re-staging of the three most stuff-stuffed rooms in the house, one of which was Jon’s lair where likes to store the mother (and father and extended multi-generational family) of all messes. It took some doing, but the messes have been banished for now, and Jon has been surprisingly cooperative in the project.

Now we’ll just sit back and wait for hordes of eager buyers to pour through the door. We can but dream…

Home, sweet home

We’ve just come back from a trip to Denmark. I had to put in a few days of work and meetings, and Jon came along so we could also look at houses. The plan, as you may already know, is eventually to move to Denmark, and these are early steps towards that goal.

The thing is that Jon has been off sick from work since August last year. During that period he has seen his works doctor about every six weeks, and each time the guy has been of the opinion that Jon is incapable of working in a normal way (or, in the local legalese, that Jon is 0% fit for work). Unfortunately, we find this hard to disagree with. While Jon can still do various things related to his old job – review papers, consult on experimental design, perhaps write up old results – he does this at a speed that is unacceptable in the workplace, with multiple breaks when some body part or other plays up. There are also jobs he cannot do at all any more, such as building testing machinery, engaging in public speaking, and meeting deadlines. Obviously, there is a limit to how long Jon’s employer is going to want to keep paying for this.

So what we think will happen is that sometime during the next year, Jon will be assessed for a disability pension, and going by what both the works doctor and the neurologist tell us, the upshot of it will be the end of Jon’s formal work life. This is a bitter pill to swallow, not least for a man who has for as long as I have known him identified himself entirely with his work and who has always claimed he would go on until they barred the doors against him. Well, as it turns out it’s not ‘they’ who are barring the doors, but Parkinson’s.

If it were me, I’d be furious and despondent and quite impossible to live with. Happily, Jon is taking it rather better, and is pretty resigned to the life changing decisions that loom. And we are trying to make this not just a loss, but also a trigger for a new start and positive changes.

Rather than fret over the loss of salary that our budget will soon have to absorb, and worry about how long Jon will be able to manage the stairs in our house (seeing that he has already had one period where that was a big issue), and rather than continue on in Holland where we do not speak the native language of the health professionals, we are going to take this bastard of a situation by the balls and plan to move to my native country of Denmark if and when Jon’s work situation gets settled.

So we’re thinking about putting our house up for sale now in the expectation that it will probably sit on the market for a ponderously long while before selling. And we’ve started looking for a base in Demark in the expectation that with our very specific wishes it may take equally long for us to find the right place. It would be great if everything could come together in some perfect ballet of timing, but otherwise we’ll just have to rent a place to tide us over.

What kind of house do we want, then, and what kind of house does Parkinson’s want?

• A bungalow, obviously, since stairs are just out of the question.
• Preferably wide doorways and no doorsteps between rooms so that the place is zimmerframe (rollator) friendly.
• Outdoor steps arranged so that ramps or similar can easily be fitted.
• A bathroom large enough for a helper, and with a bathtub to soothe Jon’s aching muscles when needed (far from a given as most Danes prefer to shower).
• Two good bedrooms as we can no longer share because of Jon’s increasing twitching and jerking (and snoring), plus an extra bedroom for when the kids visit from abroad.
• Broadband access so that we can work from home – Jon permanently and me occasionally at first and perhaps permanently later if Jon comes to need a constant presence in the house.
• Since we’re looking at rural places – both because of our budget and because I want enough land to grow apples and eggs – the heating system becomes an issue as many houses have boilers that require very regular attention which could soon be beyond Jon.
• A place in good repair as any sizeable DIY project is entirely beyond us, for reasons of physical and practical ability and because we have never enjoyed that sort of thing in the first place (indeed have in happier times sailed close to divorce over the fitting of curtain rails and the like).
• Reasonably easy access to the house itself so that there is no risk of rain or snow cutting us off from medical or practical help.
• Within no more than an hour’s commute from the main Parkinson’s centre in Denmark (which happily lies in Copenhagen where most of my family and our friends live).
• Preferably a winner in the postcode lottery of municipal services for the lesser-abled, such as home help and free physiotherapy.

And on top of these disease-ridden requirements come the normal issues that are part of anybody’s moving plans, like price and size and neighbourhood and taste etc.

So it makes sense to start looking already even though we may not be ready to actually move for another year or two – and it’s also quite good fun, planning for a new future and a new level of comfort (and having a good laugh at other people’s taste in wallpaper). We have moved about a lot in the years we have been together and have, I think, become rather good at it, so this is a bit like taking up an old pet project and dusting off our skills. I’m sure there will be a point when it all just becomes stressful and hard work, but for now it is a pleasant and hopeful way to spend a few spring days.