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.

Shrinking

Last week we were in Denmark, attending a double 70th birthday party, and doing a bit of house hunting on the side. Marie also had to see some clients, get a tooth fixed, stock up on herring – general tasks of life. Meanwhile, I stayed with Marie’s parents who (unlike their daughter) are excellent at just letting me get on with life at my own pace. So I took lots of reading materials, two computers, a box file of scientific papers to read – and what did I achieve? Two and a half paperbacks read, admittedly thick ones, but in the old days I would polish off two books in a day. Not now – I have often forgotten the beginning of the sentence before I get to the end, which lends a certain surreal quality to much of my reading.

But if that is the case, you ask, how come I can writing this blog? Two reasons: I only write when my L-dopa is at its optimal level (and I then write very, very slowly and deleting a great deal as I go along), and Marie edits the resulting stream of strange consciousness into text afterwards. At the moment, writing the blog feels like hard work, as does sorting and editing the photos I took at the birthday party which is something I would normally actively enjoy.

The problem, according to shrink 2, is that for me to start on any task I need to be triggered into action. This new psychotherapist (shrink 2) seems to be even better than shrink 1, who was very competent but not an expert on Parkinson’s. Which was fine since it turned out that at the time it was she who must be obeyed who had the pressing problem (a problem which turned out to be me, of course – however, anyway, dot dot dot). Shrink 2, though, is an great expert on Parkinson’s and started out on our first date by describing me to myself with frightening accuracy, including the fact that I don’t get things done because I quite simply lack the drive – apparently very common with Parkinson’s.

Given that shrink 2 delivered an excellent diagnosis, could it be he has some form of treatment up his sleeve? The snag, you see, is that all this “triggering” can easily come over as “nagging” (especially, I suspect, when done by one’s beloved wife). OK, I accept that I need to be prodded, but it’s a very delicate balance between getting a helpful nudge and being nagged. Which really doesn’t help, but just makes me screw my stubborn behind even further into the sofa.

It is of course also important that I’m nudged/nagged at the correct phase of my symptoms. No use starting the morning by discussing the day’s programme as I am unlikely to be focused enough to remember it later. No use suggesting I should go for a walk at noon as that is a low point in my day, whereas I’m at my physical peak between 1 and 3 in the afternoon. And no use trying to have a sensible conversation with me after 9 pm as I’m generally too tired to think by then.

On top of all this we are doing a diet experiment this week and next, based on the idea that protein in the diet can interfere with of L-dopa (because protein breaks down into amino acids that compete with L-dope for absorption in the gut). So one should never take L-dopa too close to a meal full of protein-rich foods, but for some people it is apparently worth going further and living on a generally protein-reduced diet. Finding out whether that also works for me involves eating a low-protein diet for two weeks to see if it makes me feel better. Can’t say I’m looking forward to it, but if there is a chance it could reduce the symptom fluctuations, I’ll give it a go. It might also help me loose some weight. 90 kg at the moment, and I’d like to get to 80 kg. I may make it, the low-protein food has been fairly horrid so far and I expect it to get worse. Ever the optimist, me.

Memories

JON: I’ve been meaning to write about my memory problems – but I keep forgetting. OK, when you have picked yourself off the floor laughing, try to imagine what it’s like to have no recollection of the recent past. It can make you quite paranoid at times – having no recollection of what happened last week, and no idea what plans have been laid for this week. And people (well, Marie) keep claiming that I have participated in discussions and agreed to sweeping decisions of which I have absolutely no recollection.

As a practical example: it was Marie’s birthday a few days ago. I had bought her a pendant in the shape of a string of DNA (you know: a bit of double helix – which happens to be the symbol adopted by Brights (born-again atheists)). Actually, when I say “I bought”, I actually mean she scoured the web for a version she liked, then ordered it and paid for it on my credit card – but it was my idea! It arrived in the post weeks ago and I hid it away somewhere safe.

After being prompted the night before, I managed to remember the birthday the next morning, but despite extensive poking around the deep recesses of my memory: could I remember where I hid the pendant? Not a chance, absolutely no recollection at all. Fortunately Marie had spotted it herself, hidden in plain view on a shelf in the garage, so was able to guide me to the bag – though I was still not one hundred percent sure of the contents when I gave it to her.

MARIE: We last wrote about memory issues in the post from 28 June, when the Parkinson Centre neurologist had just explained to us that Jon’s problems with remembering things were most likely related not to his memory going bad but to issues with paying attention. As I understand it, this is caused by an unfortunate interplay of two common symptoms. One is the erosion of ‘automatic’ patterns of movement so, for instance, unlocking a door or getting into a car is no longer something that happens with mindless ease, but something that must be planned and broken into its constituent parts of small, separate movements that can be done in sequence rather than simultaneously. The other is difficulty with multi-tasking, which means that Parkinsonians really do find it difficult to walk and chew gum at the same time.

What it boils down to is that Jon is easily distracted by the need to focus his attention on small physical tasks and thus does not pay sufficient attention to what goes on around him to be able to store it in memory. Even during dinner, where one might think he would be able to zero in on a discussion of next week’s programme, he may instead be grappling with the difficult wrist-twisting movements necessary to load a fork with spaghetti, or could be concentrating on chewing his food without biting his tongue, or planning how to reach for the pepper grinder.

This is a bloody nuisance, and a rather unexpected one. We obviously know better than to equate Parkinson’s with shaking (in fact, Jon has very little tremor), but much of what we heard and read initially about the disease lead us to think of it as a movement disorder with stiffness, slowness, etc. (of which Jon has much). It is becoming clear now that this is far from the full story. The movement issues may be more noticeable at first, but with them come a slew of related effects on mood and mentition – which may, for someone as sedentary as Jon, turn out to be the more troublesome symptoms.

Jon’s social life (and by extension, mine too) is also much affected by the disease, but that is a subject for another post – soon.