To do or not to do, that is the question

JON: It’s been an odd sort of a week. The good news is that the local authority has decided to pay for my grab pole – and not just for loan, as my occupational therapist had told me was most likely, but to have and to hold onto forever. Even better, it is proving very useful for getting into and out of bed. I suspect that I’m rather slower than the average Olympic athlete but I think I would now stand a decent chance of getting out of bed in case of a fire. Is there an Olympic getting-out-of-bed event?

Less good, I’ve been accused of becoming dull – ME! Who’d have thought it? OK, snoring on the couch whilst holding a book may not count as multi-tasking, but it is a pleasant way of passing the time. In my defense, it was a rather dull book, and I had at least got out of bed.

To try to become less boring, I have decided to take up my interest in photography again. I’ve been trying for some time to get pictures of fluids mixing, such as the swirling patterns created when you add milk to coffee. I’ve had a go using ambient light and with flashgun(s), but so far the perfect shot eludes me. So a quick trip to the local DIY store to buy halogen lights and a good rummage in my room to find suitable cables should soon see me sorted out soon. I think I might even be getting a little bit excited about the project. Watch this space.

MARIE: As the intelligent reader might have surmised, it was indeed I who accused Jon of becoming boring. All his pastimes are passive – reading, listening to the radio, watching TV. While they may be good books and intelligent programmes, I don’t think that’s enough to feed a mind. Particularly since much of it seems to go in one ear and out another so Jon often can’t actually remember enough detail to have a worthwhile conversation afterwards.

Jon’s lack of energy and lack of initiative has been a recurring subject in this blog. Our psychologist says these issues are common in Parkinson’s and has tried to give Jon / us various tools and ideas to overcome the inertia, but to little effect. He now believes medication may be the way forward, so in two weeks’ time we are seeing a psychiatrist colleague of the psychologist (who cannot himself prescribe drugs).

I hope this will help. I suspect the issues are partly direct effects of Parkinson’s and partly to do with the extremely fraught way in which Jon exited the world of paid work. This left him with a dented self-image and self-confidence that makes withdrawal into the soft armchair of geriatric decline seem like a comfortable solution. But he has the capacity for so much more, and it would be entirely wonderful if the two psychos between them can bring that out again.

Proteins are go!

MARIE: I’ve just realized that we never followed up on our experiment with a low-protein diet (to avoid unhelpful competition between L-dopa and protein in the gut) – see posts from 4th July and 14th September.

Well, the good news is that our two experimental weeks on a low-protein diet didn’t seem to make any difference to Jon’s condition. It may become an issue later, of course, but for now we can continue with our normal diet. Which is just as well, because it was surprisingly difficult to live the low-protein life.

The general recommendation for a balanced diet includes 50-120 gr of protein per day for an adult woman, 60-150 for an adult man. A lightly protein-reduced diet is viewed as one hovering at the low end of the normal range, which for men means 50-70 gr of protein per day. That didn’t sound too difficult at first. As everyone knows, proteins are mainly found in meat, and there are lots of delicious vegetarian things to eat. Okay, Jon is pretty keen on meat, but not to the complete exclusion of vegetarian food. Surely we could find two weeks worth of veggie dishes that he would enjoy.

Then I had a look in the dietary guidelines we’d been given by the hospital and discovered that a vegetarian diet was not going to do the trick at all, what was needed was something closer to a vegan diet. All the lovely vegetarian dinners I had looked forward to involved eggs, cheese, cream and/or butter in fairly copious quantities. No good, as all are high in protein. Even wheat products (bread, pasta, biscuits) are full of proteins and had to be tightly controlled. Rice is a bit less protein-rich, so we could have risotto (without the parmesan and butter) and fried rice (without the egg). Potato has even less protein, so we went to town on boiled potatoes (without sauce) and potato salad (hold the mayo). Fruit and vegetables (excluding beans and peas) were a free-for-all, so we could have thick vegetable soups (accompanied by no bread), oven bakes (without the cheesy topping), fruit smoothies (without the yogurt), and stewed fruits (without the custard).

This was all immensely healthy, but not particularly tasty. Basically, once we’d had a survival ration of breakfast cereal and enough milk to temper a day’s worth of tea or coffee, we’d already used up half the day’s protein allowance. Fresh fruit and green salad is nice, yes, but not all day every day. IF this regime had made Jon feel better, I’m sure we would have found a way to live with it (but even vegan cookbooks are full of forbidden things like beans and nuts, so it would not have been easy). It’s a great relief that we can get stuck into meat and dairy again – although we do try to eat a little less of it now.

We’re also trying to watch our sugar and fat intake a little more. Nothing fanatic (as Jon says: eat well, stay fit, die anyway), but we had gotten a little bit out of hand and both needed reining in again. Just because you have Parkinson’s that doesn’t mean you can’t get diabetes too.

De-cluttering mind and home

As Iaid in a previous blog I’m finding it harder and harder to think of things to write about on this blog. Not only on the blog, in fact, but also in the book Oh yes, The Book (on food science) that I am supposed to be writing with two old colleagues is turning into something of a chore. My shrink told me that I should not be surprised, that I should expect to find things like deep concentration and multi-tasking difficult. Although at the moment I can still chew gum and walk at the same time, there may well come a time …

My contribution to the book is supposed to be three chapters. I’ve more or less written one, though it’s not very exciting but does at least have a beginning, a middle and an end, and some parts which are of interest. But I wrote this more than six months ago, when I think my thinking was better. Since then, I’ve put a fair amount of time into working on the other two chapters. They now contain lots of words, but all very disjointed, and the more I try to fix the text the worse it seems to get. This, I’m told, is a symptom of my Parkinsonian inability to mentally multi-task and hold more than one idea in my working memory.

I’m hoping that recognizing the problem may be part of the way to fixing it. The shrink suggests that I should attack the writing in small chunks and at times when I’m the very most functional. This is clearly a good idea – in fact, it is painfully obvious, so why (the hell) have I not been able to work it out for myself? I still only recognize the wisdom when I’m ‘on’. When I’m ‘off’, I can sit at the keyboard for hours without achieving anything, and without recognizing that I am ‘off’ because … I’m ‘off’.

I’ve been trying to get into a routine of writing again, but this time I’m going to try generating small chunks of text by writing a paragraph or two on a well-defined subtopic and then passing the bits on to my co-authors who I hope will be able to slot the text into an appropriate position and provide any linking text that may be needed. Who knows, it might just work. And we have eight more months to do the job which might just be long enough to generate a manuscript.

Oh, and did I mention that we have put the house up for sale? There has been a mad rush of potential buyers coming to look round the house – TWO of them in three weeks. Marie has decided the house looked to cluttered, so she has rented a 5 cubic meter self-storage container into which many belongings are now disappearing. For example, we had some storage boxes under the bed – yup, they’ve now gone into storage. Who looks under the bed when viewing a house? I’ve decided to be politic and not mention it.

I fear that for the foreseeable future we will be living in a state of splendid isolation and increasing obsessive-compulsive behaviours. No-one other than potential buyers will be allowed into the house, all crumbs and spillages will be cleaned up on sight, pillows fluffed the moment one has got up off the couch – in other words, a living death. At least I have put my foot firmly down on the issue of my study, which remains a haven for all the messes exiled from other parts of the house. I suppose it’s nice to have something other than my Parkinson’s to complain about for a change …

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.