Cause for celebration

JON: As you can see, there has been great excitement in our village this week as “we” have celebrated first the Queen’s birthday and then the 65th anniversary of liberation which is a big deal around here – in fact, A bridge too far (the film) happened more or less down the road from us. Much bunting and several parades, the highlight of the village year!

Anyway, despite a visit earlier today to our psychologist, aimed at starting to unravel the great taboo subject of whether I should be ‘allowed’ to take my medication as I want, Marie and I have managed to remain on excellent terms (nudge, nudge). Which is particularly fortunate, as we are soon to embark on a three-week tour of the USA starting in Las Vegas and ending in the Yellowstone National Park. I predict it’s going to be great! We may come across the occasional Internet café and keep you up to date, but most likely you’ll just have to wait until we are back for details.

Although I have to confess that in a fit of retail therapy I bought a new mobile phone. It may or may not work in the US (previous phones have not). It has all the bells and whistles an old techie could wish for: MP3 player, camera, internet access, all sorts of connectivities – and because it’s an Android phone it will even let me play with programming my own applets. So far, set-up has required one visit back to the shop and two total resets of the device. I actually think this is great as the thing is sure to keep me occupied for weeks and weeks. One of the best toys I’ve had in a long time.

Anyway, we shall leave cyberspace to its own devices while we’re away, and leave the house in the capable forelimbs of the cat and his cat-sitter – the girl from next door, who has a large family and therefore enjoys the quiet (and undisputed control of the TV remote) that she finds in our house when we’re away. Marie has shown me the evidence that a mole has also recently moved in, so the place will be full of life in our absence.

We leave you with the news that as our ‘fame’ spreads, we now have over 200 readers in countries ranging from Norway to Nigeria. We seem to be going global. Parkinson’s rules!

Feeling good

JON: I mentioned a while ago that I had added a “hit counter” to this blog and as you can see from the map below, our fame begins to spread far and wide. Since January we have had 160 unique hits (that is 160 different people) of which about 90% have made return visits – which seems fairly good to me. So thanks for reading the blog, it makes a big difference to know that there is someone out there who likes it enough to spend time on it (repeatedly).

Last week, Marie and I went on separate trips, hers involved working for a living, while mine involved having a good time. And much to my amazement I did. At home I get very, very tired, sometimes as early as 8 pm, and am regularly in bed by 9 pm. On this trip, however, I stayed up past midnight and woke at my normal 7:00 – even better, I woke with no hangover.

I’m not entirely sure what I was doing right. At the first sign of fatigue, I gave myself booster doses of L-dopa (in half tab increments) and added an extra Ritalin tablet per day. In addition to the drugs, I drank beer. Not in excess – less than a pint per hour, but that’s still much more than I’ve had in a long time.

So the question is, what was it that made me feel so good? Just the fact of seeing old friends (and having a very good time)? Increasing the dosage of L-dopa? Increasing the Ritalin? Drinking beer? My guess is that it was a combination of factors. This is clearly an experiment that needs to be repeated under completely uncontrolled conditions, so I am already thinking about my next trip.

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 …

Doing my scales

It’s been a while since I last posted, and in fact I am beginning to wonder if this blog is a good idea. It makes me somehow very self-centered and probably bores the pants off my readers (assuming that I have any – I’ve not dared to add a hit counter yet). These navel-gazing questions of how I (we) have been, are there any new symptoms, have I adjusted my medication / seen a doctor / had an insight – do I even want to think about it? There is such a thing as healthy denial, you know.

One day at a time, as they say, and on a day-to-day basis there are no changes, or the changes are too small to detect, i.e. falling below the threshold of the ‘just noticeable difference’. I wonder what the SI unit for that is? Marie suggests the St Peter after the statue of same in the Church of St Peter in Rome. Apparently, the devout all kiss or stroke one foot of this statue, and while of course you see no difference from day to day, if you take a perspective of years or decades the foot is clearly eroded by belief – to the point where Peter is now, as far as she knows, on his third extremity. For Parkinson’s, the St Peter could be based on twitches per day, or time to put socks on, or perhaps likelihood of getting to the phone before the answering machine kicks in.

This new unit seems to me an improvement over the current tool used by neurologists, the Hoen and Yahr scale which is just a five point scale for impairments physical, mental, occupational, social, etc. Here, a score of one equals very mild symptoms (a slight tremor, a little slowness) while a score of five denotes conditions you really don’t want to think about too much, involving wheelchairs, enemas and cognitive meltdown.

Talking of which: we played chess, I won a couple of games but I also managed to lose some by such ploys as taking my own pawns when I forgot whether I was black or white. Was this a symptom of ageing, fatigue, alcohol or the beginnings of something nastier? Who knows. Likewise, I got persuaded to contribute to the radio programme about my dad that I mentioned in an earlier blog. I gave a short interview about my work over the phone and to be honest I think I made a total balls of it, sprouting nonsense and non-sequiteurs all over the place. The interviewer claims he can edit it into something reasonable, and I say good luck to him.

As far as I am aware, there are no accurate tests, no machine to tell you that you are exactly 3.23 on the Parkinson’s scale and deteriorating by 0.14 per year. And if there were, would I want to use such a machine, or is (some) ignorance really bliss? It’s a slow and insidious process, and given that there is no cure and that treatment only gets less effective over time, what is the value of knowing?

Perhaps I would rather live as our cat who was born with a degenerative, incurable kidney disease and by now has hardly any normal kidney tissue or life expectancy left. But the cat doesn’t know that, and the disease has progressed slowly enough for him to adjust to the effects at every stage and continue to live an almost entirely normal cat life of playing, snoozing, looking cute and ruthlessly killing small furry animals. This seems to me a pretty ideal way of being terminally ill.

So I’m opting for a denial strategy. I’m fine if anyone asks, and if they really, really probe I think I’ll continue to claim that I’m fine, although I may add an ‘–ish’ to indicate this is rather less than the full story. For a while, then, I will leave this blog to Marie who claims to be bursting with things to write about. My ears are burning already...

Do not go gently

It has been cold here, with ice and snow, so I went for a walk. Have I mentioned that I have a slight limp? Well, my right leg tends to drag, which in normal conditions is fairly unpleasant as it sets off a grating sensation in my whole right side. But walking on snow, I find that I glide smoothly over the surface. It was nice, that. Not nice enough to move to the Arctic circle for, but nice enough for me to go for another walk when I’ve finished this post.

Otherwise, I’ve been doing the three R’s this week: reading, (w)riting and resting, in roughly equal proportions. I am, at last, making progress on my joint writing project, and feeling quite virtuous and perhaps even a little bit fired up.

But it’s the reading that has been the most rewarding this week. Two things in particular. The first is a book about recovering from stroke, My Stroke of Insight by Jill Bolte Taylor, a stroke-stricken brain scientist who knows the subjects literally inside and out and who took 8 years to recover. Parkinson’s patients should probably read the book backwards as we travel in the opposite direction from the author, getting worse and worse. But there are interesting observations in there, also for PD.

Closer to home, Marie stumbled across a blog called Lab Rat’s Desk, written by a woman with one of the PD+ syndromes (the medics can’t decide what to call it). She writes very well indeed, illustrates the text with her own stunning art work, and is a prolific blogger. Somehow I find her blog reassuring. Her body is clearly letting her down very badly (and she apparently used to be a ballerina – one of God’s mean little jokes), and she is not being brave about it. Instead, and utterly reasonably, she complains bitterly and honestly. I wish her well. She represents my future, but the good news is, in her words:

“My life is no picnic. Like most persons with these diseases I cannot sleep, eat, walk, talk well. I have had to repeatedly teach myself toilet-ing to prevent incontinence. I have had the torments of being treated like a child by the well meaning, and the impatience of those unwilling to wait for my considered answers. Sometimes my food has to be liquid, and other times my stomach is a bottomless pit because my broken brain tells me I have to keep eating. I am in constant pain where my neck and face contort from spasms, as do my feet and legs and on bad days my hands also. – it goes on in similar vein, but then comes a but …..
But, it is not the worst disease, not by a long shot. I have had friends die from far more horrible diseases and at much younger ages. Unlike Huntington’s I have my ability to think. Unlike most cancers there are no awful, painful and frightening treatments, which may fail. I have had no body parts amputated. My mother had her breast amputated in her forties and she grieves the loss each and every day. A friend of mine has Scleroderma and has her body slowly turning into virtual stone until her lungs will no longer expand and contract. She is not old, and has not had a normal day with her children as she was ill from the time they were young. Mine is not the worst disease.”

For more, go to http://labratsdesk.wordpress.com/2009/01/

In fact, I have spent quite a bit of time in front of the computer this week, not just reading blogs, but also because I recently got invited to Facebook, which turns out to be a wonderful non-productivity tool. I haven’t amassed many ‘friends’ yet, but among them are people I went to school with who are suddenly crawling out of the woodwork. As it turns out, someone has even posted a picture of me aged 17, playing guitar for the band Simple Harmonic Motion. No, I’m not telling you how to find that... I’ve been uploading some of my own pictures too. It’s kind of fun and its nice to get feedback and to collect new (old) friends. Plus it makes me feel all plugged in and alive to be part of this global cyber-community.