Going cheap!

JON: As you know, we have agreed the purchase of a new house in Denmark on the 1st of November. We will obviously both be there for the ritual meter reading and key exchange, but shortly after that I will return to the Netherlands alone, where I will look after the cat, the old house and possibly even myself, while Marie will stay in Denmark to supervise work to revamp a bathroom, install a woodburning stove, paint every surface of the house, sand all the floors, etc. etc. etc. There’s a lot to be done, but if all goes to plan we’ll end up with a very habitable (and PD friendly) house.

We still have the problem of disposing of our existing house, although I am happy to report some recent and promising movement on that. There is a lovely couple who appear to be interested in the house and are coming back for a second viewing this weekend. Many questions have already been asked and the answers accepted, so there is a pretty good chance that this is it. Fingers tightly crossed!

Whatever happens with the old house, the whole projects involves regular toing and froing on the German motorways which are perhaps not the safest place in the world. Marie and I are now of an age when diseases, disasters and decrepitude are real concerns, and I must admit I do rather worry about the immediate future. What would happen to me in the event of Marie’s sudden demise on the speed-crazed bumper of a Mercedes driver? I could end up with two houses in places where I have not an iota of understanding of the legal system, the language, my rights, etc.

But that’s just me being bleak. I’ve been told by people who read this blog that I am amusing, even outright funny at times. Well, it’s not meant to be funny (at least not all the time). I’ve got a progressive neurological disease, and that’s just not a joking matter – so shame on you for laughing. If I’m miserable, then I want the rest of the planet to be miserable too! Annoyingly, though, the only person around here on whom I can attempt to inflict sympathetic misery is Marie, and she downright refuses to take the blame for my moods.

What’s a bloke to do? Maybe going to the World Parkinson’s Congress in Scotland next week will help. I like conferences, I like meeting new people and networking, and I particularly like being in places with lots of pubs.

Quiz time

JON: Marie and I have had a bit of a row this week. It’s a pretty childish on both our parts but still miserable while it goes on.

The problem has two parts. The first part is that “we have a plan” for the processes and work involved in our up-coming house move. We have apparently discussed this at great length and depth. The second part is that I keep asking for details of the plan. Marie finds this very annoying as I keep asking about things that she claims we have already discussed to bits, and I can’t say I blame her.

However, rather than telling me that we have had the same conversation five times already and please (for god’s sake) will I pay attention this time – which would seem to me a reasonable strategy – what happens instead is that she starts to quiz me: “We’ve agreed this already, you know perfectly well what was decided, so you tell me the answer to your question”. Put under stress like this, my mind goes blank, my mouth dries up entirely and I may even start to shake. If she keeps pushing, I get angry and start to sulk. You don’t need to be a rocket (lettuce) scientist to predict that this doesn’t help.

We seem to be prone to this kind of problem where my memory causes grief. For example, I recently got the title of Marie’s book wrong, a small but emotionally significant error. And annoyingly I can remember a similar recent argument, but I can’t remember any of the details (and this is not a joke).

My psychologist has told me that this sort of thing is quite possibly not actually a memory issue but a question of not paying attention. The problem is that Parkinson’s makes it hard to multitask, so if I’ve been told something during a walk in the woods, I may not remember what was said as I was too focused on the task of walking. Which is of course annoying for Marie, who may feel that she talked to me at a time with few distractions as we were all alone in the woods.

Anyway, the latest row has passed and we are now friends again, just in time for me to bugger off to the UK tomorrow for a boys-only weekend. We used to be able to keep a row going for days, sometimes weeks, but (like erections) they just don’t seem to last as long these days.

Things to look forward to

JON: In my last posting I moaned about being OFF for far more of the day than I am prepared to put up with. Well, nothing's changed: my back hurts like buggery, various and varied bits of me feel as if they are in spasm, and if I ever find the incompetent git who designed this body – well, he’s not going to enjoy the meeting. Intelligent design? Ha, more like 5pm on a Friday … And it is raining again, not proper rain like we used to get when I were a lad, but this new fangled miserable drizzle that goes on for day after day after damp bloody day. Not that I want to appear negative in any way, because I do have a couple of things to look forward to.

First, I’m off to the UK next weekend to see some old, old friends who I’ve known since my school days (I would have said “since I was a small boy in short trousers”, but in fact my German mum made me a small boy in lederhosen …). Since we’re now all terribly middle-aged, I doubt there will be much debauchery, but I’m all geared up for drinking too much beer and talking bollocks.

And the week after that we’re going to the Parkinson’s congress in Glasgow. I’ll let Marie talk about that, she does cheerful so much better than me.

MARIE: In the course of our work lives, Jon and I have both attended numerous academic conferences – he to make presentations and build a network, me to sell books and build a business. We’ve both enjoyed this hugely, so when we heard of the World Parkinson’s Congress in Glasgow later this month, we were immediately interested.

It sounds pretty excellent, with four days packed with lectures, events, displays, games, posters – and full of people who really know about PD. An embarrassment of riches, really, and the difficulty is in choosing which bits to attend. We’re also hoping to meet others from the internet chat forum we frequent, I’ve promised to write a few articles for the Danish association’s magazine, and Jon is on a mission to take photos for a poster – plus we’ve signed up for every available optional extra, from the opening reception to the closing ‘brain game’ session.

Quite ambitious, and if Jon continues to feel as he does now, we’ll not manage everything. By luck and design, though, our hotel is very near the conference venue, so he can slink off for the occasional nap with or without me. It’ll be brilliant.

Making the best of things

MARIE: I recently read a book (not in English) that purported to give advice and support for the chronically ill and those who care for them. I really tried to like this book despite its poor organization, but it fell down in the usual place: no, it does not give support to carers, it just instructs us on how to support those we care for. It shouldn’t come as much of a surprise to me, really, but it was still disappointing.

However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.

It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).

On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!

For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!