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 …