May I live in un-interesting times

JON: It’s getting harder and harder to write these blogs. I guess I’m just not all that interesting, particularly since I seem to have drifted into a fairly monotonous routine. So Tuesdays I go to physiotherapy, every other Friday there’s psychotherapy, on Mondays and Wednesdays I cook, etc., etc. You might think that what I need is for something interesting to happen, but I’ve done interesting – the full set of interesting, with hospitals, doctors, lots of people with an -ist after their names and opinions about how to treat Parkinson’s. Now, I think I just want to be left alone.

Marie worries that I have not so much slipped into a routine but more like got stuck in a rut. Is there is a subtle difference between the two? She thinks I am becoming less interested in the world, and therefore less interesting to be with. Based on my current ramblings, she could have a point.

My shrink has me pegged as being lethargic, and I’m beginning to think he is probably right. For example, our copy of Terry Pratchett’s latest book arrived here recently. Normally this would have been a cause of much rejoicing followed by several hours of chuckling and laughter as I zoomed the book from cover to cover. What actually happened is that I sat on the book for 2 weeks, made a start and got stuck after about 100 pages, and then passed it on to M. She is now reading it at her normal, rather sub-Jon speed and tells me it is very good. So am I lazy or lethargic? It looks like lethargy when I can’t muster the energy to do things that I am almost certain to enjoy.

This may make me sound like a miserable old sod, but I’m really not. I don’t seek out excitement because I don’t particularly like excitement. Just stick me in a corner facing the wall and I’m a happy bunny, lost in my own thoughts, or perhaps in no thoughts at all (or, even more likely, nodding off, but that’s beside the point).

Marie has reduced her formal working hours to just 1 intense day a week. This scares me as it could leave her with far too much time to focus on me. She claims I shouldn’t worry as she has many mysterious projects she wants to engage in. So far it’s been OK, apart from the forced route marches she has me take on a daily basis, rain or shine. But she means well. I complain unjustly, and it may indeed be that the forced exercise is doing me some good. She has also started on a manuscript with the working title The Book of Jon, which is to be a biography going from diagnosis to some stable end state (such as death? cure?), so don’t hold your breath. We are supposed to be in this together, i.e. we talk about what should be in each chapter, she then drafts the text, I go through making detailed comments, and after several rounds of this we may come up with a readable text. In fact, chapter one seems to be working well so far. However, I do worry that subsequent chapters could be far less interesting – at least I am hoping they will turn out boring. Because in my book, boring = stable, while interesting = Things Happening (and those are often unpleasant things), and I refuse to develop new symptoms just to carry the narrative along and make the book more ‘interesting’.

Starting work on this first chapter of BOJ, which deals with the time before I was diagnosed, has brought back many memories which all pre-date this blog. But it’s been interesting (there’s that word again) to think back and compare how and who I was then with how I am now. One rather startling difference is my walking. Back then, Marie had to force me into taking even the shortest walk in our local woods. I remember whinging and whining, and having to be held upright as I stumbled along the path. Any observer would have thought I was drunk. In fact, our next door neighbour who is a care assistant saw me passing and made the correct diagnosis on the basis of my gait, as did an old friend who is a GP and my sister-in-law who is a trauma nurse – which rather begs the question why did it take three hospital neurologists and three assorted professors of medicine before someone got the official diagnosis right. But I digress. On those earlier walks I barely made it to the end of our street and it took me about an hour to complete a small circuit, whereas now I do the same walk in 20 minutes (and less if it starts to rain). So I guess that even though Parkinson’s is a progressive disease, it is possible harness drugs and life style to win the occasional battle and improve in one or two aspects. That’s something, at least.

Pacing ourselves

MARIE: We’re recently back from holiday, where we made more or less a circle by car from home in The Netherlands through a few days in Bruges in Belgium, a week in a chalet in the Loire Valley in France, and a couple of days visiting friends in Luxemburg on the way home.

There were a couple of firsts involved. This was our first driving holiday together and partly served as a taster / tester for a trip we are hoping to make in the spring, driving through the national parks of the Western US. Since Jon now only drives shorter distances that he is already familiar with, I did all the driving. Would that exhaust me? Would we bicker about directions and the need for breaks? Would Jon’s back complain at the amount of enforced sitting? Happily, the answer in all cases was NO. Our GPS (known as Mrs Tom) played a big part in this, but we also found that this is a holiday form that suits us both, at least for now.

This was also the first holiday Jon has ever suggested in all the time we have known each other. For the last 16 years, every holiday we have been on has been my idea – even most (but not quite all) of our visits to see Jon’s children and grandchildren have been suggested and organized by me. It was so nice, just really nice, that for once I didn’t have to convince and cajole him, but could sit back and think that “yes, that sounds like a pretty good idea – okay, let’s do it”. A first, but hopefully not a last. Admittedly, the reason behind it is that my one-time workaholic husband now finds himself with too much time on his hands and not enough energy to spend it in a productive manner. But I count this holiday (and those to follow?) as a thick silver lining.

Lastly, this is the first holiday where we have had to fit our activities around Jon’s medication regime and periods of wearing off. He is still struggling with strangely slow effects of his drugs, and fairly short periods of optimal effects. He takes a dose every four hours, but each dose only gives him about 2 ½ hours of peak condition, which obviously means 1 ½ hours out of every four hours when he is slow (both physically and mentally), tired and often in some discomfort.

It is an evolving task to find the right pattern of daily activities to fit around Jon’s ups and downs. We would regularly get in the car when Jon was on top of the world, only to find that by the time we arrived at our destination he would be hunched and shuffling and in no fit state to enjoy anything other than a sit down. So we spent much time enjoying the late summer sun in the street cafés thoughtfully provided by the tourist industry, and less time exploring monasteries and castles and medieval town centres (which I am sure suited Jon absolutely fine). We also fell into a rhythm of doing much one day and little the next, giving him time to rest and both of us time to make a good dent in the large pile of books we had brought with us.

These are obviously patterns that we must also make room for on future holidays, so perhaps our days of traveling in small groups with a guide are over, and perhaps we have to adjust our rather ambitious itinerary plans for the US trip. But what is also clear is that holidays are still very much an option and highly enjoyable for us both – so long as we allow for the fact that Dr Parkinson is our constant, invisible companion.

Freebies

Last Monday ‘Mrs Eee’ my ergotherapist paid me a visit at home, very civilized and very convenient for me. She decided she would try and get me a pole to help me getting in and out of bed (see http://www.pakpaal.nl/home-en). Amazingly, this will be entirely free for me. Apparently, there is some bureaucratic nonsense where a pole by the bed are paid by the local council but a pole by the sofa is paid by the health insurance – but never mind, they can argue it out between them.

As to my problems with controlling the computer mouse, Mrs Eee had a menu of different mice (mouses?) and also gave me the option of having a custom-built mouse – again paid for by the benevolent and munificent state. However, I suspect my mouse problems are due to going off, plus possibly a bit of repetitive strain injury in the palm of my hand. But it’s good to know that help is there if I need it.

The pole arrived this week, and there was much dancing around it in celebration. We installed it by my bed, and it works – not in fact so great for dancing, but as an aid for getting out of bed it is very, very good. It also turns out to be ridiculously expensive, but who am I to care? Mrs Eee is coming round again tomorrow to teach me more tricks for how to get maximum use out of my pole.

Another source of excitement is that I have had a test ride on a tricycle – one wheel at the front and two at the back. I found it surprisingly easy to ride, mainly because it’s almost impossible to fall off, which is really quite reassuring given my recent history with two-wheeled bikes. Steering is a bit more tricky: on a conventional bike you lean over going into corners, while on the trike you have to keep all three wheels on the ground so it’s best to avoid tilting the bike. Tilting is an amazingly ingrown behaviour, though – neither I, nor Mrs Eee or Marie who both tried the bike, could stop ourselves from leaning over.

Naturally, I also have to look around to see who is behind me (fortunately unlikely to be a car as Holland has an excellent network of cycle paths), a highly challenging task with my stiff neck. Unless I get a trike with side mirrors and get better at indicating where I’m going, I’m quite likely to cause regular crashes with other bikers. I am also well placed to crash into those ahead of me because the brakes are not 100% perfect, and those next to me as I tend to drift off line into anyone attempting to overtake me. Anyway, Mrs Eee will take me for more test drives before letting me loose on my own trike, and I am considering getting L-plates.

If indeed I get a trike at all, as this must first be approved by the local council, and then sourced from the manufacturers. I’m told that this can be a slow process – but what passes for slow here in flat-land ? 1 week? 3 months? Well, the sooner the better as I have rather high hopes for my renewed mobility.