Profit and loss

This blog regularly talks about losses – of function, of work, of certainties, etc. – but Parkinson’s also gives back in some round-about ways. There is this general idea that bad things also bring some good because their victims gain a new and better perspective on life, generally involving a greater presence in the moment and an enhanced appreciation of the small pleasures of daily life. At two extremes:

From the blog PD and me (www.not-likely.co.uk/blog)
‘I can live with the PD, it makes me realise everything I have to be grateful for. It took me a long time to accept my PD but it has made me realise I have so much that I should be grateful for and that we often take life way too seriously, my PD has grounded me with a bump and made me look around and take stock of things and I'm glad its happened.’

From the book C – because cowards get cancer too by John Diamond who chronicled his treatment and deterioration from the oral cancer that ended up killing him:
'I have learned a lot about myself in nine months, and a lot about those around me. Much of that knowledge is useful, liberating even. Equally much of it is banal stuff which I should have known anyway had I bothered to think about it. But the bad has outweighed the good a millionfold … It shouldn’t be like this. That I can face the fact that it is like this is, I suppose, something. But what a bloody meagre something it is.'

Jon and I fit somewhere on that great continuum from someone who has embraced his incurable disease to someone who rails against a disease that has a very good cure rate (only not in his particular case). The disease has enabled us to spend much more time together, which on most days we would count as a good thing. And it has most certainly refocused us towards the here and now.

We cannot know how Jon’s particular instance of the disease will progress, all we can know is that it will indeed progress. So we try not to put good things off until next year, until tomorrow, until after we’ve done the laundry. It doesn’t always work – it is, after all, quite useful to have clean socks – but is certainly very different from before PD. Likewise, I think we take more pleasure from the things Jon can do, mainly in terms of physical feats and general endurance, simply because these things are now not to be taken for granted in perpetuity.

Parkinson’s may also be giving another ‘gift’. A while ago Jon’s favourite author Terry Pratchett did a couple of BBC programmes about his newly diagnosed Alzheimer’s disease. We were surprised that Pratchett chose to visit the Alzheimer’s section in a nursing home – I would have thought this would be a frightening demonstration of the likely end-point of his journey. But, as he pointed out, Alzheimer’s by its very nature both gives and takes. As your mental faculties fade, so does any awareness that you have a problem (although I expect this still leaves a terrifying middle period when sufferers realize in their clear moments that they are slowly but surely losing it).

Well, in Parkinson’s the blessing in heavy disguise may be the apathy which, according to another book we recently read (Brain and Behavior by Joseph Friedman), affects a large proportion of PD sufferers and makes them not really care one way or another about the gradual loss of functions. Is apathy caused directly by the disease, Friedman wonders, or is it a common coping strategy? Either way, while apathy may make it easier for the person with Parkinson’s to get through the day, it is one of the hardest things for the relatives to deal with.

So I think we both really mean it quite literally when we tell people that Jon getting diagnosed with Parkinson’s was not exactly the best news we could get, but nor was it the worst.

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.

One-way conversations

Jon has had a hard week preparing for the lecture he gave this morning (which he will probably talk about in his next post), so this time I, me, Marie get to write.

We’ve both talked before in these blogs about the sense of isolation that is entirely of our making and comes from living in a country (Holland) where we don’t speak the language. That is to say, this is not something that has ever bothered us before since we know plenty of people who speak excellent English, but now that Parkinson’s is part of the mix, I for one would wish that I spoke Dutch well enough to go to some kind of support group. But instead of meeting others in the same situation face to face, I use the net – other people’s blogs, for instance. Trouble is that I don’t (yet?) feel comfortable responding to some blogger I have never met in the public sphere of blog comments. So, instead of posting to the author, why don’t I just tell you about this post I read the other day which set me thinking.

It was in the one blog I have been able to find that is written by another wife of a fairly-early-onset Parkinsonian, so many of the posts speak about concerns I have too – such as asking how other people will understand what is wrong with Jon when only I see him early in the mornings before his first dose of L-dopa has kicked in, and wondering when I get annoyed whether I am actually upset with some essential Jon-ness or with an aspect of Parkinson’s that isn't under his control, and fretting about how the disease will affect our future in practical, financial and emotional terms. For more, the address is http://lifewithshaky.blogspot.com/

Anyway, among all the good stuff was one post I didn’t agree with, where the blogger listed the various things she sacrifices to (her husband with) Parkinson’s:

I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my emotional and spiritual well being, etc.

See, I don’t think I’m sacrificing one little bit to Parkinson’s. “Sacrifice” implies an active decision to give something up for some higher purpose, personal or general – deciding to sacrifice your career prospects to have many children, or choosing to sacrifice your own comfort to perform good deeds for others. But I have had no choice in the matter whatsoever: I love Jon, not by choice but by some primal serendipity, so I share my life with him, and so anything that happens to him also happens to me. I have made no conscious sacrifices to PD, but I certainly have suffered losses to the disease. I have lost peace of mind, lost the innocent belief that good things will last, lost a lot of time and a lot of sleep, lost a range of previously possible futures, and I have regularly lost my temper in frustration and self-pity. (But really, what is that against everything Jon has lost?)

Inevitable losses come to us all and one just has to live with them as a condition of life, like being short-sighted or too old for a career in football. But I refuse to make sacrifices to Parkinson’s. It’s all words, of course, but I think what struck me was that (to me at least) someone who sacrifices is somehow inherently admirable, and that doesn’t feel right. If anything we do is to be admired, let it be how we cope rather than what we may be thought to sacrifice. Nor do we hanker to be pitied, although I admit that does somehow feel more appropriate.

Okay, enough about that now. There was a TV programme recently in the US that is being recommended by lots of PD blogs, called My Father, My Brother and Me because the journalist behind it comes from a family with these three PD sufferers. Well worth watching, I thought, as it is serious and informative, and also gives an inkling of what life with PD can be like. The full programme can be seen at http://www.pbs.org/wgbh/pages/frontline/parkinsons/

One of the points discussed is research into how exercise might affect the development of the disease. Jon and I aren’t great at sticking to any kind of exercise regime – I mean, we both kept smoking long after anyone with any sense had stopped, so it’s not as if we’re into looking after ourselves. However, we got ourselves a basic Wii console some months ago and have both been playing regularly, and last week we added a Wii Fit foot board. It is the greatest fun! We both have addictive personalities, so there has been some fighting over the controls. Jon is not normally very competitive – or, at least, he normally only competes against himself and the memory of his dad – but I am, so Jon gets a very satisfying reaction out of me when he beats me. I try a bit of everything, but Jon has quickly specialized in slalom skiing where he is way ahead of me.

So the Wii gives both of us a bit of much-needed exercise (while the outdoors remains uninvitingly Februarish), and because most of the games are about quick reactions and controlling your balance, I think it might actually be pretty appropriate for Parkinson’s. At least, that’s our excuse.