Cold (s)naps

JON: Nothing new on Ritalin yet – possibly my prescription is stuck in the Xmas mail. The sooner it gets here the better. Meanwhile:

Xmas week thick snow covered most of northern Europe and our out-door thermometer recorded a low of –11 C – and that’s without taking into account the wind chill factor. I know this for a fact since I was made to walk around in it.

And that’s it, really, in terms of holiday activity. As often before, Marie and I have ignored Christmas. Okay, we ate and drank well, and were even moderately merry, but I am very pleased to say that there were no decorations, gifts, crackers or silly hats. Some good books, a number of icy walks, much cooking (on Marie’s part) and a fair bit of napping (on my part). Pretty good. I am planning for a repeat over the New Year’s break.

And I have, for once, deserved a break, because earlier this month I was quite the jet setter, flying first to Nottingham (on my own!) to give a lecture and then to Leeds with Marie to see the kids and grandkids, all of whom are wonderful, intelligent, beautiful and charming (though I may perhaps be slightly prejudiced).

The visit to Nottingham went well. I stayed with a friend, and we talked much of teeth, food and ‘the good old times’. Happily, the lecture I was there to give went OK too. I’ve shown this material before and thought I had the timing down to a T, with a number of loops and possible exit points to adjust the length, so my running slow was not too problematic. Near the end I lost it, though, and found myself staring at the screen in bewilderment before admitting that ‘I’m sorry, I haven’t a clue what this slide shows – let’s just move on…’

But I got interesting questions, no-one fell asleep, and I got taken out for what might have been a rather fine meal had I not spent so much time talking that when we finally arrived at the restaurant the chef had gone home. However, they served beer and peanuts so not all was lost.

Giving the lecture was, I think, less stressful than the one I gave last year, This I suspect was mainly due to the timing. Last time my 9am lecture involved a 5am start so I could get my body in gear, i.e. have sufficient time to enter my ON state, whereas this time we planned the lecture so that I would give it during my normal ON period.

Medical bulletin: Hot news is that I have a new appointment (at last) to have my sleep patterns recorded at a special hospital clinic. We tried this last year and it was an utter disaster. I was laboriously wired up to a 32 channel EEG – looked like a porcupine gone very wrong with cables super-glued to head, chest and limbs. Marie left the clinic at about 8:00 pm, I fell asleep at 08:01 pm and immediately ripped the electrodes off my head – very painful if you are awake, quite painless if asleep. By this time the night shift had come on and nobody knew how to replace the electrodes. Which kind of confirmed that I had a sleep disorder... This time it should be less dramatic, as I’m told I just twitch a bit when I’m in dreaming. Well, I twitch when I’m awake, don’t I, but we’ve been down that road. OK, I also jerk about and talk quite loudly in my sleep, which I admit is a bit anti-social. We’ll soon see what the doctors think.

Hypo-activity

JON: It would have been nice if my psychiatrist had turned out to be young, black and musical because then I could have titled this blog “shrink (w)rapping”. But he isn’t so I can’t, and it wasn’t a particularly good joke anyway – but hey, cut me some slack: I’m a sick man. At least both psychologist and psychiatrist agree that I have a pathological lack of drive, or as they say in shrink-speak “auto-motivation”.

What this means is that I don’t do things. That includes things I hate (like filling in tax forms) but also things I used to actively enjoy. I just sit there like a large lump of lard – sometimes with the TV on, most times with it off which is perhaps even more worrying. The psychiatrist was called in to advise on whether drugs could help get me out of this rut where psychology alone could not. He suggested two possible routes of action, Ritalin or Bupropinol.

Yes, Ritalin is known mainly as the drug of choice against ADHD (attention-deficit hyperactive disorder), and while admittedly my condition fits with the first two letters, no-one can accuse me of being hyperactive. But the psychiatrist explained that Ritalin works by focusing the mind and concentrating attention, which sounds just the ticket for me. Also, it has the advantage that it acts quite fast, so I would know in the course of just a few hours whether it is having the desired effect.

Bupropinol, on the other hand, is an anti-depressive used against apathy and suchlike – and, oddly, to help people stop smoking. Its action takes weeks rather than mere hours to appear, and since I (and Marie and the psychologist) don’t think I’m depressed, this seems a less attractive option. So after being sent home to think about the options, I have decided that I’m going for Ritalin first. Watch this space.

Actually, I’m not sure I’m 100% happy with being given the choice, On the plus side it gives the illusion of control, but the downside is that if there are side effects then it will be because I chose them. And since both drugs would be prescribed off-label (i.e. for a use other than that specified by the manufacturers) I suppose there could be unusual and unexpected side effects. Ho hum.

And another thing: today we get our third potential house buyer through the door. Marie had been cleaning and dusting and generally being hyper (should I offer her some of Ritalin?) and I’ve been cowering in a corner trying to read – rather a good book, as it turns out. It’s called Bad Science and with me the author Ben Goldacre is preaching to the converted – but he has fresh ammunition and some of the descriptions of the utter crap people are prepared to believe are . . . well, you have to see to believe it. The worst example is a teaching pack called ‘Brain Gym’ which is apparently used in UK schools and which teaches patent nonsense such as that processed food contains no water and that water held in the mouth hydrates the brain directly. Sadly, one is not allowed to shoot these purveyors of such garbage, and even if I got hold of a shotgun I’d probably miss because of the Parkinson’s.

Awakenings

MARIE: As Jon said, I was away for a good week, and a few days after I came back Jon went off to visit old friends and colleagues in England. He always leaves lots of spoor behind, so it took no great deductive powers to find that he had watched Awakenings again (the film based on the documentary based on the book by Oliver Sacks where he tells the stories of his patients who had an ultra-severe form of Parkinsonism brought on by the late effects of a particular type of encephalitis). It’s a very fine film, as we both thought when we first saw it, independently of each other and many years before Jon had any inkling it would gain a personal relevance. So thus prompted, I watched it too while Jon was away.

There is an element of self-pitying catharsis in it now. Because the film is a tear-jerker about people who have essentially the same symptoms as Jon, though orders of magnitude worse and at a time when effective medication was in its infancy, it is like seeing our little everyday struggles blown up to a scale where the dynamics and mechanics become crystal-clear. And that, of course, means we can see shades of ourselves in the situation and have a good old cry – ostensibly over the film, but really over ourselves. Which is nice, in a slightly twisted sort of way.

Having seen the film, which focuses on one particular patient, Leonard L., I also felt like dipping back into the original book to re-read his case history there. The film character is a simplification and generalization of the case history – and fair enough, film usually both adds to and detracts from the material on which it is based. The real story of Leonard L. is actually far more moving than the film, which presents him and the other patients as completely frozen physically and essentially catatonic before they are administered L-dopa. In reality, Leonard was highly intelligent, a Harvard Ph.D. student before his admission to hospital, and a voracious reader and book reviewer during his decades in hospital – so long as someone was there to do what his prison of body could not: turn the pages for him. Maybe it was simply one step too far to expect mass cinema audiences to enjoy a film about a man trapped alive in an immovable body? Better and easier to pretend that he was unaware.

But what struck me in particular this time round was the portrayal (identical in book and film) of Leonard’s relationship with his mother who cared for him throughout his illness, spending every single day in the hospital with him. In his pre-dopa state, he is physically like a huge, docile baby. His mother spoon-feeds him, dresses him, entertains him (i.e. turns his pages, I guess), even changes his nappies. She looks after him and speaks for him. It is, simultaneously, complete devotion and utter captivity. His feelings are apparently equally torn, as Sacks says he sees in Leonard alternating expressions of pleasure and resentment.

But the thing, which may seem surprising but is probably almost inevitable, is that his mother (and many of the other patients’ relatives, too) is deeply unhappy with the initial improvement brought about by L-dopa. In many cases (in reality as in the film) the first reaction of patients to L-dopa is almost miraculous – from frozen statues to almost normal function (though this does not last beyond some weeks or months before very severe side effects set in and force the termination of treatment). But where does this sudden improvement and independence leave the devoted carer whose life and purpose revolves around the sick bed? Suddenly you are adrift, surplus to requirements, perhaps mostly a reminder of bad times. In fact, I recently read a (Danish) self-help book about how to make your marriage survive illness, where the authors discussed how couples often split up because they cannot handle the cure – the partner who was ill tends to get euphoric and self-centered, while the partner who was caring gets depressed and feels abandoned.

In a very small way, we experienced a bit of the same when Jon got better after he stopped the Sifrol that was giving him such hideous side effects (as described in posts mainly from August to October 2008). I found it hard to accept that he really was permanently better, that he didn’t need my help any longer and actively didn’t want me to give him his medication or even necessarily know exactly what he was taking. I found it surprisingly difficult to relinquish responsibility, especially over medication, and he found it quite impossible to live with me in control of it. He felt smothered, I felt rejected. I pleaded, he stone-walled. Eventually we saw a couples therapist and got over it, but not easily – and that was after just a few months of impairment. I have only the tiniest inkling of what it must have been like for Leonard and his mother. Enough, though, to require several tissues to mop up.

Alone but not lonely

JON: For reasons I don’t fully understand, Marie headed off to Denmark for a week or so. She muttered something about seeing clients, house hunting, sorting out a broken tooth and other non-important stuff. She took the car, which was a bad thing, but she also left me with a full fridge and careful instructions on how to use the washing machine, freezer, cat, etc.

So how did I cope, I hear you ask? Not too badly, I hear myself answer. I cooked, cleaned, and did a surprising amount of exercise. (Honest, I really did!) As to the cooking, it may not have been the healthiest diet but it tasted really, really good and I’m prepared to believe that a little of what you fancy does you good. And in my defense, I only had the one packet of chocolate digestives.

I have to admit that house cleaning is not my strong suit, but I cleaned the kitchen sink (minutes) before Marie came home, wiped up a spectacular display of cat vomit, and stacked all my papers into a single pile and hid them in my room. Most days I went for a walk in the woods and when it was raining I used the static bicycle (for about 1 hour a day, which is pretty heroic by my standards).

So on balance how did I cope with my enforced isolation? What did I achieve? Was I lonely? On the achievement front I think I can safely say that I managed to do virtually nothing, didn’t finish my new Terry Pratchett book, did very little sketching. Marie recently bought the full sets of Star Trek Next Generation, Voyager and DS9 on DVD (several hundred hours of viewing pleasure) but I resisted the temptation and will watch them one or two episodes at a time with Marie. Star Trek seems to me to be like drinking, fine if you do it in company, not so fine if you indulge alone.

Was I lonely? Well, no. I thought I might be, but writing the occasional e-mail, chatting with Marie on the phone most days and with a few others too in the course of the week fulfilled my needs for social interactions. Did I miss Marie? I have to admit that I did – and not only because she’ll be reading this, but also because the laundry needs doing (joke, honest!).

These 10 days I’ve spent alone have also provided a dry run for our planned move to Denmark, and very rural Denmark at that. Can I get all (okay, most) of my socializing done via the web? Yes, it seems I can. Would I be able to cope if something unexpected happened? Yes, it seems I would. Getting in and out of bed unaided is becoming difficult, but now that I have my grab pole I manage. Putting on socks and shoes may soon be beyond me, but my Crocs solve that little problem. All will be well.

In the dim and distant past when both brain and body were functioning normally – okay, normalish, if you insist – I would not have coped well with 10 days on my own. To fund my Ph.D. I did several locum jobs as a dentist, and in the evenings I would find a pub and usually strike up a conversation with the locals. Even if I did not manage a chat, I’d still have a pint and drink in the atmosphere (better that than breathing in the drink). If asked, I’d have claimed that anything is better than staying in a hotel room. But that was then. Now, a hotel room with room service, a big bath, air-con and a 100-channel satellite TV seems like bliss. As I’ve grown older I’ve come to like my own company more and more. I wonder if this is just a natural effect of ageing, is it the dreaded Parkinson’s, or am I perhaps simply a miserable old git at heart?

(PS: Do you really think I would take a photo of my bottom? Impossible, with my rigidity. Honestly, it's just a close-up of my thumb and index finger.)

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.

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.

Typical Parkinson's

I saw my personal shrink for the first time a few weeks ago. He specializes in Parkinson’s – not the physical manifestations, but the mental ones. He described me to myself quite accurately (i.e. I am typical for a Parkinsonian). And although I claimed to be apathetic, and he argued that I suffered from a lack of drive (typical P). And much as I hate to say it he could be right, so my next claim is that it’s just a matter of semantics.

I’m also mildly offended to be described as typical – I’m special, me. I want the phrase “when you have seen one case of Parkinson’s, you have seen one case of Parkinson’s” to be true. Although I can now spot a fellow Parkinsonian from 50 paces – the slow shuffle, the stiff arms, the sticky feet etc. – I am still sure each and every one of us has our own idiosyncrasies.

I seem to oscillate between on the one hand claiming that I’m very, very sick, as if I’m not going to be believed, and on the other hand shrugging it off as “just one of those things” and trying to pretend there are no problems – but if I’m that healthy in mind and body what am I doing seeing my own personal shrink? (Actually the plan is to have part of the session as a couple and part to each ourselves, but I suspect the couple stuff will also be focused on me.)

The pills also have a large effect on my mood; I bounce from lethargic couch potato to pacing panther when I endlessly walk from one end of the living room to the other in the same way that animals in zoos trace out stereotypical behaviours. Shrink is on holiday so there will be a month between first and second visit, more than enough time to ponder my mental condition.

My physiotherapist is also on holiday, but to make sure I got no rest I had an appointment with the speech therapist, the first in 3 months. The good news is that she saw no change. I, on the other hand, have started having minor difficulties swallowing, and some cheek and tongue biting. Minor symptoms, I know, but worrying nonetheless – and I probably focus on them particularly because of background in dentistry and research on the mechanics of eating.

Last week we saw my neurologist who had the report from the evaluation at ParkNet. We mainly discussed drugs, dosage, timing, etc. It feels to me that we now have the correct drug cocktail, all the right ingredients, so all we have to do now is fine tune the dosage(s) and timing(s). We also had an appointment with the Parkinson’s specialist nurse, though it turned out she didn’t know why she was seeing me and neither did I. But we had a nice chat, and it was reassuring in a way – she was the first person to imply that I was doing OK and that she didn’t see any major deterioration.

It’s been hot and humid again. Marie was away for a week in Korea which I spent sweating and ignoring the blog, computer and cat. The cat, however, makes its wishes known with sharp claws, mainly demanding food, but sometimes angling for affection (a bit like me, really).
My next task is to organize the itinerary for our holiday – a week of random driving through the French country-side and a week in a remote cottage. I plan to keep this as unplanned and random as possible, but Marie has other ideas – though I think we can come to some kind of compromise (i.e. we may be spontaneous on Tuesdays and Thursdays, and for the other days we will have a detailed route map plotted into Mrs Tomtom – “At the roundabout, turn left”).

And now as I write I notice my typing is getting a bit blurry, so it’s pill time again ...

Not all bad news

In my last post I had a little moan about feeling just a tiny bit useless. But it now seems that I am not such a waste of space after all.
(1) I got an invitation to give a lecture in the UK
(2) I got a phone call from a multi-national company asking for my advice on a technical issue

Yes, it is nice to feel wanted. I was happy to deal with (2) and am still considering (1). Perhaps a lecture is a bit much to ask of myself – the last one I gave, about a year ago, was quite stressful and not as polished as I would have liked – but I am considering asking if the idea of a lecture could be changed to more of a discussion session which I think would suit me better. But the point isn’t really whether it happens or not, it is the ego-boosting knowledge that They want it to happen.

I’ve also got a few things to look forward to, first a visit with my grand children next month, second a trip to France in the autumn, and as a matter of literary style I should have a third item which I don’t, but I’m confident that one will turn up. (Me, confident? It must be the drugs!)

Not only that, but also many and varied health professionals have been calling up to make appointments to see me at home, as a follow-up to my three-day evaluation at the Parkinson Centre last month. ‘At home’ has a nice Victorian-afternoon-tea ring to it, does it not? However, letting hoardes of white-coated men and women know where I live sounds rather less fun. But useful, I’m sure.

So, now all I have to do is determine the optimal dosage regime for my pills, attend an average of two therapeutic appointments a week for the next several months, and work out the Byzantine regulations governing disability pensions in the UK, Netherlands and Denmark. Plus write a food science text-book, vacuum the floor, tidy my room, etc., etc.

To be honest, I think the main reason I’m feeling more upbeat is that I’m taking a higher dose of L-dopa. As a result, I have more energy, less muscle pain, less stiffness, better focus, etc. Maybe there is a downside to taking a high dose, but just for now I think any price is a price worth paying, I’ll discuss mood issues with my shrink, though, as I am rather handily seeing him (her?) for the first time this afternoon.

The bin

JON: Another busy week in flat land. First I had a meeting with my boss and a guy from Human Resources where we assessed the chances of my returning to productive work from my employers’ perspective. In brief, not a snow ball’s chance in hell

The next day brought a visit with the health insurance company’s pet doctor who again rated me as 0% fit.

So there you have it. I’m past it, superfluous, outmoded, passé, redundant, over, unnecessary, not fit for purpose, rejected, dejected and pointless. What do I do now, what do I do next? And will I be able to afford to do it, whatever it is? The rules that determine what sort of benefit I might receive seem Byzantine, but with luck and a following wind all should come clear in the next month or six.

The meetings went entirely as I had expected, so my reaction to them has come as a bit of a shock. This is the outcome I want - I want to get closure from a difficult situation with work, I want to get a disability pension, I want to have this whole process over with. The only snag is that now the opportunity has arrived I feel labeled. I was OK with ‘he’s been off work for a lo-o-o-ong time because he’s got Parkinson’s, poor sod’. But ‘he’s on disability with a progressive neurological disorder and will probably never write another piece of software, never design another experiment, and soon may no longer be able to put on his own socks’ – well, that is going to take a bit of getting used to.

I need to say to myself 10 times a day: ‘I’m a guy with Parkinson’s, and its OK, and today will be the best day of my life’ – which is true, because it’s all downhill from here. But if I say it quickly enough, I may not notice the last bit. Perhaps I am actually ready for some happy pills...

MARIE: If it wasn’t for this blog, I wouldn’t know half of what goes on inside Jon. I ask – open questions, searching questions, leading questions – but much of the time the only answers I get back are ‘perhaps, a bit’ or ‘nah, not really’ or words to similar un-informative effect.

Like earlier today, when I had a go at Jon for not helping out more around the house, saying how unfair it is that he gets to lie in bed and listen to the radio while I tear around the place with my mop and duster. And then I discover in his blog text that while I was complaining about the minor inconveniences of my day, he was sitting there quietly feeling that his entire life is being thrown on the scrapheap. How sensitive and supportive was that?

One more ‘gift’ of Parkinson’s: you get a lot of practice so you end up good at forgiving. Today I am on the receiving end.

Ever more therapy

JON: One highlight of the week was our third visit to the Parkinson’s centre, where our coordinator gave us feedback from our previous two visits. Much advice had of course already been given by the experts, but the coordinator told us that there would be follow-ups with

1 A psychiatrist and a psychologist who work together and who would help to ‘coach’ me (whatever that means!) in the process of developing a life after work but with Parkinson’s.

2 An ergo-therapist (that’s an occupation therapist to you and me) who will come to our home and teach me how to cook and tie my shoelaces and other useful things that I’ve learnt at least once already but now need to re-learn in a new step-by-step approach that avoids my big issues with multi-tasking.

3 A physiotherapist – actually, this will be the woman I have been seeing for the last year or so, but the centre will suggest various adjustments to the therapy and will also encourage home visits as that can apparently be much more useful.

I am amazed at the lengths to which these people will go to help me. I rather doubt that an NHS ergo- or physiotherapist would make many home visits. Nor, I am reliably informed, should I expect this ultra-high level of service if/when we move to Denmark (though I can certainly expect better than the threadbare NHS). So I am ‘enjoying’ it while it lasts and getting as much benefit as I possibly can.

The other highlight of the week was an invasion by Marie’s nephews (10-year-old twin boys) and Marie’s sister without whom the visit would have brought us to our knees. I have a only distant memory of what 10-year-old boys are like (since my son is now 28-ish). The boys were in fact very well behaved, but the energy they expended was just phenomenal. I spent much of my time hiding in the bedroom with my radio (internet radio being a great boon to the expat community), mainly emerging for meals and the occasional sedentary game, all of which I duly lost as any good uncle should (though I managed to do so without actually trying).

The centre of attention

JON: So, I guess you will want a report of my day of pampering at the Parkinson Centre, right?

Well, after some chatting, the occupational therapist asked me to do two things: boil an egg and peel an apple. I started with the apple, which turned out to be very, very difficult for me. Half way through, she pointed out that I’d forgotten to start the egg. That's when it all got a bit confused. They had an electric hob and I’m a gas-man, so now I was trying to do several things at once – work out the cooker, watch the egg, find an egg cup, finish peeling the apple, and find a plate to serve the apple quarters. Marie seemed to feel that this was a productive exercise – defining my boundaries, etc. I found it depressing, not having realized how far I’ve sunk into the mire. It was a bit like having my nose rubbed in my disabilities.

The psychiatrist thinks that although I’m not depressed now (or yet), I should make a pre-emptive strike by considering some happy pills before I do get depressive, and also possibly engage with a psycho-coach to help in ‘the process of coming to terms’. I am open to the first idea, and not completely closed to the second.

The social worker was very helpful and directed us to the right place to sort out our pension / social security issues (Marie talks more about that below).

The dietician, rather predictably, told us to eat less and exercise more, and we agreed. We also chatted about the protein problem. The problem is this: L-dopa is a form of amino acid, so it competes for absorption with any other amino acid present in the gut. Proteins from food are broken down in the stomach into amino acids. Thus, eating lots of proteins can hinder the absorption of L-dopa. Normally the advice is just to avoid protein-rich foods around the time that you take your L-dopa medication, but it could also be that a general low-protein diet would make me feel better. It works for some, but not for all. We agreed to try it for 2 weeks (at a suitable time) to see if it makes a difference for me. I guess even placebo can be a good thing in the right circumstances, it’s just that being an ex-dentist I have a professional problem with gift-horses…

On the whole it was a very productive day. The downside is that it forced me into confronting my current problems and, worse, those that are yet to come. My policy of denial was working OK for me before, but now I have to think about these things. Plan A was to be shot at the age of 90 by a jealous husband, plan B now seems to involve electric wheelchairs, bed-baths (lots of lather, please nurse) and buckets of liquidized food. Ho hum.

MARIE: Is that a light at the end of the tunnel, or just an on-coming train? It seems we may, at long last, be able to make some progress on Jon’s status regarding work and pension, and thus begin to tame the many uncertainties that have been stressing us out - few things, in my fortunately limited experience, being worse than uncertainty and the sense of powerlessness it brings. Well, actually, everyone knows that there's nothing worse than a paper cut, but uncertainty comes second.

At the utterly marvelous and intensely exhausting day we had at the Parkinson Centre this week, Jon was seen and assessed and advised by many experts all of whom agreed that there was more they could do to help him but that it was highly unlikely this would render him a viable prospect on the job market, and that the focus should therefore be on helping him adjust to and cope with a life of leisure (which sounds a lot better than it is when it comes from being incurably ill at the age of 56).

It has been almost a year since Jon went on sick leave, which is cause for an evaluation of the prospects for his return to work and of the effect of efforts made towards ‘rehabilitating’ him back into the labour force. Which both appear to be essentially nil, in the eyes of his works doctor and supervisor. This in turn raises the question whether Jon should apply to be assessed for disability pension now, or remain in limbo for another year before the assessment is forced on him. I had a long and helpful chat with the government body that awards these pensions, and was told that it was exceedingly rare for them to overturn the opinion of a works doctor.

That means we now have a clear path: first see the works doctor (appointment in two weeks’ time) and get his opinion, then see supervisor and personnel department to confirm details of salary, pension and insurance (hopefully on the same day). Next, see Jon’s normal neurologist (next month) to get her opinion. Then, if (as we now firmly expect) everyone agrees that there is no hope of Jon retuning to work, apply for disability pension, wait up to 10 weeks for the response, and draw a sigh of relief at one less uncertainty to keep us awake at night.

JON: On re-reading the text below, I realize that only an obsessive-compulsive pharmacist could possibly be interested, so unless you are indeed an obsessive-compulsive pharmacist or possibly a PWP, skip the rest of this post. (People With Parkinson’s who can’t skip, can just crawl to the helpful button marked X.)

The neurologist who adjusted my medication last week was very careful to stress that when adjusting treatment (drug, dosage, timing, frequency, etc.) it is VERY important to change only one thing at a time – and then went on to suggest that I make two changes: switch from Sinemet to Madopar dispers (a rapid-uptake form of L-dopa) and start to take a daily Azilect (rasagiline, a MAO-B inhibitor) which supposedly prevents breakdown of dopamine in the brain and thus leaves me with a higher level which is a Good Thing.

So, as Dr Phil might say: ‘how’s that workin’ for ya?’ And the answer would have to be CRAP. Back in the good old days (i.e. last Thursday) on Sinemet, I took 3 doses a day at 5-hour intervals. It sort of worked, but not well. Basically, the pills took upwards of 2 hours to take effect, I then felt good for an hour or so, then downhill until the next dose. We did a straight swap to the same dosage and frequency of Madopar. It takes effect quicker (1 hour or less), but also seems to wear off quicker, and the good bit isn’t as good. I’ve been very strict and not allowed myself any ‘tweenies’ which I have to admit I did back in the old days. I’ll give it a little longer but am not feeling hopeful.

Experts, experts everywhere

A few days ago Jon had the first of his three appointments with the Parkinson centre who are doing a thorough review of his situation and treatment. First almost an hour with a coordinator who went through the various main problems Jon is experiencing and on this basis discussed with us which specialists it would be most helpful to see at the next appointment. We settled on a social worker to help clarify the situation surrounding work and pension, a speech therapist to assess speech and also review issues Jon is beginning to have with excess saliva, a psychiatrist to weigh in on whether Jon’s mood is perfectly reasonable in view of his health or whether he could be cheered up with chemicals or therapy, an ergotherapist to further discuss the work situation and coping strategies both at work and at home, and lastly a dietician to explain to us how to drop some weight (as if we didn’t know, but it could still be interesting to hear what she has to say).

Next came three quarters of an hour with a neurologist who confirmed the diagnosis, discussed its progression and reviewed Jon’s medication. The first major thing to come out of that was a new medication strategy to counter issues Jon has had with the effect of the medication taking a lo-o-ong time to kick in and not working at full effect for very long. He now has instead some quick release medication (Madopar dispers) and it already appears that this is a clear improvement. It will probably also be necessary to up either the dosage or the frequency (we think the latter might be best), but as the neurologist said, we should only change one thing at a time so we can see what the effect is before making the next change. (Yes well, the neurologist probably feels fine all day so may find methodical patience easier than Jon does.)

The other big thing was that we discussed what Jon and I thought were his memory problems, which have concerned us greatly since it’s one thing to get shaky and clumsy, but quite another for Jon to start losing his cognitive muscle. There have been two distinct issues: Jon is getting slower at retrieving stored information (as in TV quizzes where he knows the answer but can’t search the memory files quickly enough), and we also feared that his short-term memory was going, which could be the start of something really very nasty. But the neurologist said he thought there was very little likelihood that Jon’s problems are related to the quality of his memory. PD slows down not just the body but also the brain, so the information retrieval issues are to be expected but do not signify problems with the quality of Jon’s memory. And nor are the short-term memory problems a question of quality but much more likely to be a case of wandering attention, which is apparently also common in Parkinson’s (partly because of difficulty with multi-tasking). I find that the most enormous relief. Defective memory is scary, but wandering attention is easily dealt with. I now know not to expect Jon to remember what we have talked about on a walk unless we stop walking and concentrate on talking, and I know that if I want to be sure he stores something in memory I should simply ask him to repeat it thus confirming that he was paying attention. Easy-peasy.

The last appointment this week was with a physiotherapist. Jon has been seeing a one of those weekly for quite a while with little obvious effect – but since we cannot know whether perhaps she has been busy keeping deterioration at bay, there has been no talk of quitting. To be honest, Jon has been somewhat resistant to taking advice. For instance, when shown a ‘better and easier’ way of getting in and out of the car, he has tried a few times but then soon reverted to his own laborious method. The physiotherapist at the Parkinson Centre demonstrated exactly the same method but with one huge difference: he explained why this is a better and easier way for those with Parkinson’s – to do with breaking complex movements into smaller chunks to get around the difficulties with multi-tasking. Jon has always been immensely skeptical of unsubstantiated claims that something is ‘better’ (honestly, it’s the sort of thing a homeopath might say), so I am hoping perhaps the reasoned explanations will be the missing link that makes him take his normal physiotherapist’s advice more seriously.

The whole day was really brilliant, everyone was impressively professional and insightful and helpful, and we just can’t wait to go back for more next week.

Profit and loss

This blog regularly talks about losses – of function, of work, of certainties, etc. – but Parkinson’s also gives back in some round-about ways. There is this general idea that bad things also bring some good because their victims gain a new and better perspective on life, generally involving a greater presence in the moment and an enhanced appreciation of the small pleasures of daily life. At two extremes:

From the blog PD and me (www.not-likely.co.uk/blog)
‘I can live with the PD, it makes me realise everything I have to be grateful for. It took me a long time to accept my PD but it has made me realise I have so much that I should be grateful for and that we often take life way too seriously, my PD has grounded me with a bump and made me look around and take stock of things and I'm glad its happened.’

From the book C – because cowards get cancer too by John Diamond who chronicled his treatment and deterioration from the oral cancer that ended up killing him:
'I have learned a lot about myself in nine months, and a lot about those around me. Much of that knowledge is useful, liberating even. Equally much of it is banal stuff which I should have known anyway had I bothered to think about it. But the bad has outweighed the good a millionfold … It shouldn’t be like this. That I can face the fact that it is like this is, I suppose, something. But what a bloody meagre something it is.'

Jon and I fit somewhere on that great continuum from someone who has embraced his incurable disease to someone who rails against a disease that has a very good cure rate (only not in his particular case). The disease has enabled us to spend much more time together, which on most days we would count as a good thing. And it has most certainly refocused us towards the here and now.

We cannot know how Jon’s particular instance of the disease will progress, all we can know is that it will indeed progress. So we try not to put good things off until next year, until tomorrow, until after we’ve done the laundry. It doesn’t always work – it is, after all, quite useful to have clean socks – but is certainly very different from before PD. Likewise, I think we take more pleasure from the things Jon can do, mainly in terms of physical feats and general endurance, simply because these things are now not to be taken for granted in perpetuity.

Parkinson’s may also be giving another ‘gift’. A while ago Jon’s favourite author Terry Pratchett did a couple of BBC programmes about his newly diagnosed Alzheimer’s disease. We were surprised that Pratchett chose to visit the Alzheimer’s section in a nursing home – I would have thought this would be a frightening demonstration of the likely end-point of his journey. But, as he pointed out, Alzheimer’s by its very nature both gives and takes. As your mental faculties fade, so does any awareness that you have a problem (although I expect this still leaves a terrifying middle period when sufferers realize in their clear moments that they are slowly but surely losing it).

Well, in Parkinson’s the blessing in heavy disguise may be the apathy which, according to another book we recently read (Brain and Behavior by Joseph Friedman), affects a large proportion of PD sufferers and makes them not really care one way or another about the gradual loss of functions. Is apathy caused directly by the disease, Friedman wonders, or is it a common coping strategy? Either way, while apathy may make it easier for the person with Parkinson’s to get through the day, it is one of the hardest things for the relatives to deal with.

So I think we both really mean it quite literally when we tell people that Jon getting diagnosed with Parkinson’s was not exactly the best news we could get, but nor was it the worst.

Enough with the questions!

MARIE: We have just spent three jolly hours deciphering and responding to an 80 (eighty!) page questionnaire in Dutch about every aspect imaginable of Jon’s Parkinson’s. It sure is hard work being ill…

Seriously, though, this is a good thing. It is stage one of a thorough examination of the State of Jon which will be conducted over the next several weeks at a specialist Parkinson’s centre connected to the hospital he goes to. First you answer a million questions and solicit statements from all the different therapists involved (physio, psycho, the lot), then you (i.e. patient and partner, they insist on that) go to an appointment with a neurologist and a care coordinator where they go through your various answers and determine where there appear to be issues that need to be dealt with. Then an entire team of specialists are brought together to deal with these issues during a full day of consultations where you could be seen by physiotherapists, speech therapists, ergo-therapists, social workers, nurse-practitioners and any number of other experts. And lastly, there is another neurology appointment where recommendations are made and plans put forward for future treatments.

It’s crappy bad luck that Jon has got Parkinson’s, but if you’re going to get iot, what amazingly good luck to get it in Holland! Again and again we are bowled over by the efficiency, speed and thoroughness with which the health service works here.

So what do they ask about, then? Well, everything. For instance: have you ever fallen over? If so, how often? Where? How hard? In which situations? Do you feel faint first? Are you conscious throughout? Do you do anything to stop it? Could you do anything to stop it? Are you afraid of falling over? How afraid? Is your partner afraid you will fall over? Does the fear of falling over stop you doing activities you enjoy? Which activities? Is that a problem for you? Do you want to talk to someone about it? – I expect that you begin to see how easy it is to ask 80 pages worth of questions and still stay relevant to the matter in hand.

And these were the easy questions that could be answered on the spot. More time consuming was finding the names, addresses, phone numbers and e-mail addresses of every health professional Jon has seen in connection with Parkinson’s, listing every medication he has ever taken with precise dosages and frequencies, and micro-recording his every activity for several days for a reflective diary. But I really do think this will turn out to be time well spent. Watch this space.

JON: Since my last whine the sun has come out and all is well. Well, perhaps not ‘all’ but certainly ‘most’... well, more than last time I blogged, at least. In fact I’m feeling much better than I was, the sciatica is easing, I can sit almost normally, and I have a choice which side to lie on Most likely the sciatica has little if anything to do with the Parkinson’s; chances are it is just wear and tear and this old(ish) body slowly crumbling.

The high spot of the week has been filling in the 80 page questionnaire, with lots of comprehensive list of symptoms – on some pages I got a BINGO! when I could tick all the boxes: yes, I’m stiff; yes, I’m constipated, yes, I’m shaky; etc. etc.

But there were also pages where I ticked only a few boxes, such as where they asked about problems with eating and appetite. These I assume are symptoms that are yet to manifest themselves. Oh joy. The guide to the questionnaire did say very firmly that not everyone gets every symptom and that one shouldn’t get worried about the length of the lists of symptoms. Do I believe that, though? Bah, humbug!

Name dropping

Jon is in famous company with his Parkinson’s: Muhammad Ali, Pope John Paul II and, most vociferously, Michael J. Fox. (It is pretty poignant that Parkinson’s has all but taken Ali’s very distinctive voice from him, leaving him with an indistinct whisper.) Of course we read Fox’ first book, Lucky Man, where he talked about how he learned he had the disease, how he concealed it for years, how he finally ‘came out’, and how he wound down his acting career and started up his Foundation for funding research into a cure for Parkinson’s. Fox made his name being funny, so of course there was funny writing in there, but also parts that were very moving and that spoke directly to the stage we were at and the fears we were dealing with when we read the book.

Now Fox has just published a second volume of autobiography, Always Looking Up, which we bought as soon as it came out. Jon read it first and found it less engaging than the first book. I’ve just read it over the last few days, and I kind of agree. There is a fair bit of repetition from the first book, and a fair bit of the kind of name dropping and funny-story-telling that one would expect from any celebrity biography but that is of limited interest to us. However, when I decided to skip all pages with too many capital letters (i.e. too many famous names and the places they met), then what remained turned out to be a very decent book about coming to terms with the disease.

In the first book Fox had deep brain surgery on both hemispheres, so in this new book he is right out of treatment options. There are only the pills left, and at the advanced stage of the disease that he has reached, they work very much less than ideally. Basically, what you get after a number of years on L-dopa is what is termed ‘on-off’ periods, which mean periods when the medication is not working at all and periods when it is working well. These periods can alternate abruptly and quite unpredictably. As if that wasn’t enough to contend with, there are also periods when the medication is, in a sense, working far too well – when it doesn’t just stop the debilitating, cramped slowness, but instead accelerates the entire body into a riot of uncontrollable motions known as dyskinesias.

This is still many years away for Jon, indeed he may well never get to the stage Fox is at (normally, the later in life you get the disease, the slower it will develop). So in that sense, the book has less immediate significance for us. But as an example of coping, of counting your blessings instead of listing your troubles, of sheer chutzpah in the face of just about anything life throws at him, Michael J. Fox is amazing. What he does in the way of raising funds for research and keeping stem cell research a live issue in US politics is immensely valuable. His inspirational example, though, is entirely invaluable.

Purpose and pleasure

Jon has had a couple of busy days as his son and daughter-in-law have been here for a long weekend. I wouldn’t say that Jon was suddenly capable of astounding feats of physical fitness, but he certainly did better than I had expected. He is still battling with his sciatica (and of course the PD means he can’t physically do the sort of exercises that might help), but nevertheless traipsed around with us through a museum and several city centres and even over choice selections of nature. He also got up earlier and stayed awake later at night. Okay, it all cost him a few extra pills here and there, but he enjoyed himself. That doesn’t happen often enough in my book, and it is just great when it does.

It’s that whole issue which we have both written about before and will, I am sure, write about again: what is the purpose of getting up in the morning, and given the restrictions imposed by PD: what would be a pleasant way to spend the day. These are not easy questions on most days – but become quite obvious in the vicinity of children or grandchildren. Beyond that, there is still no answer.

I am happy to report, though, that Jon has stopped mainlining The West Wing. He made it to the end of the seventh season in record time and is now ambling through the earlier seasons at my rather less obsessive pace. No other TV-based addiction has taken its place, and good weather plus a recent book delivery from Amazon may well keep him unplugged for a bit. He also claims to have worked – in his newly uncluttered study – on the legendary book he is writing. Slow going, but so long as it moves forward there is hope.

Other people we know with chronic diseases, whether the sort that stops you working or ‘just’ the sort that permanently rearranges your hopes and dreams, say this is the hardest thing, To accept the disease, to come to terms with the limitations it imposes, and to find a way to still enjoy the life that is possible. It’s a work in progress.

Why me?

In some of the blogs we follow and in several of the autobiographies we have read, people with PD struggle with the question ‘Why me? What did I do to deserve this? Is this some kind of punishment or test?’ There is clearly a religious element to these questions, an idea of a supreme will or organizing principle that ensures we each get what is coming to us. The faithful may leap intellectual hurdles and engage in logical contortions in order to explain why their god would put them through something like Parkinson’s, and yet come up with an answer that neither satisfies nor enlightens.

Jon and I, though, are strict atheists. We are quite convinced there is no higher intelligence up there (or, indeed, down there) which takes a particular interest in us. Jon hasn’t got Parkinson’s because he’s been a bad boy, and I haven’t got a sick husband because my soul is ripe for trial by fire. So why Jon? Because shit happens, and that is essentially all there is to it.

However, there is also the scientific question ‘why me?’ which has a hard time with the idea of idiopathic Parkinson’s, i.e. the version of the disease that is not hereditary or caused by drugs. Parkinson’s without a cause? Come off it. Of course there’s a cause, we just haven’t discovered it yet. There is a great deal of research going into discovering what causes Parkinson’s-without-a-cause, with various genes being singled out as possible areas of weakness, and various chemicals suspected of being contributory triggers. This is evidently highly complicated stuff and the answer likely to be equally complex, an extreme example of Occam’s lady shaver.

A scientist in a programme we saw explained that he and his colleagues think the answer involves some people being genetically vulnerable to developing Parkinson’s, but that they only actually become ill if the disease is sparked off by some outside influence – in other words, he said, ‘genes load the gun, but environment pulls the trigger’. Finding out what causes Parkinson’s would evidently be immensely helpful in the effort to prevent or cure the disease, instead of being stuck with just treating it as we are now.

Scientists are, in one important sense at least, professional optimists. They have to find financial support for their research projects by convincing superiors and research councils and charitable foundations that their work will lead to significant advances towards some desirable goal. I suspect this could be the real reason that every book about Parkinson’s we have ever read, no matter when it was published, predicts that we are only about five years away from a major breakthrough in treatment or cure. Sooner or later it will be true. Wouldn’t it be great if that turns out to be 4 ½ years ago?

Time and its uses

JON:
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.

MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.

Obsessions

When we were in England a few weeks back, I made a serious tactical error. Jon wanted to buy the third season The West Wing on DVD (he has watched it sporadically on TV), but I discovered that it was a vastly better deal to buy a box set of all seven seasons. Which we did. It turns out this box contains no less than 154 hours of viewing pleasure, and I have hardly seen Jon since he tore the cellophane, he’s been stuck like a limpet to the TV. One-hundred-and-fifty-four hours. That’s actually slightly more than the average month’s work.

His excuse is that he’s had a bout of sciatica, something that troubles him at irregular and (so far) rare intervals. There were several days when moving was clearly pretty painful, so fair enough he spent time immobolized in front of the square nanny.

And I do understand this kind of temporary but engulfing obsession. When I get my hands on a good computer game, I lose control completely. I don’t sleep, I don’t work, I don’t eat (hm, perhaps I should play more often…). And I also appreciate that it’s hard enough to keep active despite Parkinson’s, so when some other insult is added to the PD, fair enough that Jon just wants to curl up and pretend he’s away with the Presidential advisors scoring carefully-scripted points. But I do reserve the right to miss him until it’s over.

Meanwhile, I have had my own little obsession to feed. We had an estate agent round the other day – the first concrete step in what I expect will be a labourisous journey to a stair-free home – and while she was generally kind about our house, she did have a few suggestions. Which essentially, and very sensibly, involved some serious un-messing and re-staging of the three most stuff-stuffed rooms in the house, one of which was Jon’s lair where likes to store the mother (and father and extended multi-generational family) of all messes. It took some doing, but the messes have been banished for now, and Jon has been surprisingly cooperative in the project.

Now we’ll just sit back and wait for hordes of eager buyers to pour through the door. We can but dream…

Home, sweet home

We’ve just come back from a trip to Denmark. I had to put in a few days of work and meetings, and Jon came along so we could also look at houses. The plan, as you may already know, is eventually to move to Denmark, and these are early steps towards that goal.

The thing is that Jon has been off sick from work since August last year. During that period he has seen his works doctor about every six weeks, and each time the guy has been of the opinion that Jon is incapable of working in a normal way (or, in the local legalese, that Jon is 0% fit for work). Unfortunately, we find this hard to disagree with. While Jon can still do various things related to his old job – review papers, consult on experimental design, perhaps write up old results – he does this at a speed that is unacceptable in the workplace, with multiple breaks when some body part or other plays up. There are also jobs he cannot do at all any more, such as building testing machinery, engaging in public speaking, and meeting deadlines. Obviously, there is a limit to how long Jon’s employer is going to want to keep paying for this.

So what we think will happen is that sometime during the next year, Jon will be assessed for a disability pension, and going by what both the works doctor and the neurologist tell us, the upshot of it will be the end of Jon’s formal work life. This is a bitter pill to swallow, not least for a man who has for as long as I have known him identified himself entirely with his work and who has always claimed he would go on until they barred the doors against him. Well, as it turns out it’s not ‘they’ who are barring the doors, but Parkinson’s.

If it were me, I’d be furious and despondent and quite impossible to live with. Happily, Jon is taking it rather better, and is pretty resigned to the life changing decisions that loom. And we are trying to make this not just a loss, but also a trigger for a new start and positive changes.

Rather than fret over the loss of salary that our budget will soon have to absorb, and worry about how long Jon will be able to manage the stairs in our house (seeing that he has already had one period where that was a big issue), and rather than continue on in Holland where we do not speak the native language of the health professionals, we are going to take this bastard of a situation by the balls and plan to move to my native country of Denmark if and when Jon’s work situation gets settled.

So we’re thinking about putting our house up for sale now in the expectation that it will probably sit on the market for a ponderously long while before selling. And we’ve started looking for a base in Demark in the expectation that with our very specific wishes it may take equally long for us to find the right place. It would be great if everything could come together in some perfect ballet of timing, but otherwise we’ll just have to rent a place to tide us over.

What kind of house do we want, then, and what kind of house does Parkinson’s want?

• A bungalow, obviously, since stairs are just out of the question.
• Preferably wide doorways and no doorsteps between rooms so that the place is zimmerframe (rollator) friendly.
• Outdoor steps arranged so that ramps or similar can easily be fitted.
• A bathroom large enough for a helper, and with a bathtub to soothe Jon’s aching muscles when needed (far from a given as most Danes prefer to shower).
• Two good bedrooms as we can no longer share because of Jon’s increasing twitching and jerking (and snoring), plus an extra bedroom for when the kids visit from abroad.
• Broadband access so that we can work from home – Jon permanently and me occasionally at first and perhaps permanently later if Jon comes to need a constant presence in the house.
• Since we’re looking at rural places – both because of our budget and because I want enough land to grow apples and eggs – the heating system becomes an issue as many houses have boilers that require very regular attention which could soon be beyond Jon.
• A place in good repair as any sizeable DIY project is entirely beyond us, for reasons of physical and practical ability and because we have never enjoyed that sort of thing in the first place (indeed have in happier times sailed close to divorce over the fitting of curtain rails and the like).
• Reasonably easy access to the house itself so that there is no risk of rain or snow cutting us off from medical or practical help.
• Within no more than an hour’s commute from the main Parkinson’s centre in Denmark (which happily lies in Copenhagen where most of my family and our friends live).
• Preferably a winner in the postcode lottery of municipal services for the lesser-abled, such as home help and free physiotherapy.

And on top of these disease-ridden requirements come the normal issues that are part of anybody’s moving plans, like price and size and neighbourhood and taste etc.

So it makes sense to start looking already even though we may not be ready to actually move for another year or two – and it’s also quite good fun, planning for a new future and a new level of comfort (and having a good laugh at other people’s taste in wallpaper). We have moved about a lot in the years we have been together and have, I think, become rather good at it, so this is a bit like taking up an old pet project and dusting off our skills. I’m sure there will be a point when it all just becomes stressful and hard work, but for now it is a pleasant and hopeful way to spend a few spring days.

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...

Review

So how have I been doing lately, I hear you ask – don’t I?

Well, I still have problems getting off to sleep, and getting up in the mornings, so I’m not really myself until around 11:00 am. Or that’s my story. Marie’s is that if there is something I want to do or have to do, I’m up and functional within three quarters of an hour of taking my morning pills. I guess the discussion really is about what ‘functional’ means, but let’s leave that thorny little issue for another day.

My back ache is still there in the background (ha ha) which also affects my quality of sleep. I take a pain killer and have a lie down in the afternoon which helps some. I’m trying to get to a stage where I can stay awake and involved past 9:00 pm – it’s just so anti-social, but come 9 pm all I want is to climb into bed (I was going to say curl up in bed, but PD doesn’t allow curling).

There’s possible movement on the symptom front: Am I becoming more impulsive? Or merely more repulsive?

Well, we took the trip to Egypt at very short notice and I bought a new and rather expensive camera in duty-free, but the holiday had been talked about for months, and I’d been reading reviews of the camera for a long time, only waiting until I could see it in the flesh – which I did and promptly fell in love. And I have no regrets it a wonderful toy, and if I’m honest it’s also a bit of male jewelry, as in my lens is bigger than your lens.

About getting more repulsive...well, I used to the new camera to take macro pictures of my ear, which clearly show the parkinsonian ear wax (cerumen) that I produce by the kilo. Yeeech... I can’t say it has much of an impact on my quality of life, though sometimes I can hear the stuff rolling about inside my ear which is pretty horrid, and now I kind of wish I hadn’t taken the photos but could live on in happy ignorance of its appearance. It’s really very different from my pre-parkinsoniann ear wax. How do I know? Because I devoted several pages of my thesis to the fracture mechanics of (my) ear wax. Trust me, I’m a doctor.

Further on repulsiveness: I computed my BMI at 29.8 – just a few peanuts shy of obesity. My trousers are getting tighter, in a high-pitched-voice sort of way, or it could be a hernia developing. Anyway, Marie has decided it’s time for both of us to Make an Effort so the past week has been characterized by too much vegetarian food and too little pudding. I hate it when she’s right.

Lastly, the work–life balance. My book writing progresses slowly, and I’ve taken on the task of assisting in supervising an American PhD student who will visit our lab to do some work with the large intestine simulator (it’s a long story, and if you thought the ear wax was gross, well, this involves buckets of fermented poo). It’s an international collaboration: the student comes from the USA, the food samples are being prepared in Hong Kong, and we will use thin Dutch people’s poo and fat English people’s poo. Fascinating stuff, and it’s good to be involved. I’m also reading more, though nowhere near as much as I used to – the tiredness gets in the way, and even more so the back that makes it uncomfortable to sit in the same position for long, as one does when engrossed in a good book. Ho hum, you gets what you’re given.

Final interesting tidbit is news from my sister, who has persuaded BBC radio to do a 30 minute biographical programme about my father who was one the pioneers of computing at Manchester university in the 1950s. Cool, eh? So if there is any one out there with anecdotes or the like, get in touch.