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.

Success and reward

I did it! I gave the lecture and it was, well, sort of OK. I didn’t freeze, turn to jelly or have a panic attack. I didn’t get a round of applause either, nor any questions from the students, but no one fell asleep and I think they actually absorbed some information, and I count that as a pretty decent achievement for 8:30 on a Monday morning.

I hadn’t realized how much giving the lecture would take out of me. I was ratty for days before giving the lecture and drained for days afterwards. It was good to prove (mainly to myself) that I could do it, but considering the effort involved I’m not sure I’ll volunteer to do it again.

A few days later I had an appointment with My Neurologist. What to tell her? What to ask? Things have been on a more or less even keel for the past month or two. The L-dopa is not quite as effective as it was, sleeping is still less than perfect, but generally I am content enough. We adjusted the medication a bit so I now take a controlled release Sinemet (L-Dopa) at night which stops me waking myself up by twitching, and I still take a sleeping pill to combat the mild REM-sleep disorder. The combination seems to work fairly well for me.

Marie is more sceptical. I don’t leap out of bed in the morning, bright-eyed and bushy-tailed, and I go to bed earlier and earlier, plus I take naps during the day - so I suppose I’m not that much fun to be around. Apathy, I think, or is it lethargy? One would be down to me, the other a common symptom of the disease. The jury remains out.

I have managed to work up some enthusiasm for the book I am writing, though. I’ve been rummaging around the internet for data on the fluid dynamics of the large intestine - no really, it’s fascinating stuff and there does not seem to have been much work done on it, although the basic physics seem to be fairly simple(ish). Anyhow, I’ve now got an interesting set of equations and suspect that if I torture them for long enough they might yield something useful.

In the much shorter term, we had been thinking of taking a short last-minute holiday – partly to see if this would agree with us as we have never taken a charter holiday together before, and generally expect and enjoy rather different things holiday-wise. In principle, I’d be happy to turn up at the airport some day and see what is on offer, but we decided to be a bit more conventional. Egypt’s Red Sea coast and snorkeling appealed to both of us – sun, beaches, warm(ish) water, and on the all inclusive packages even the drinks are free. There was a time when this would have been very attractive to me, but my total consumption of alcohol for the year to departure date was one beer, which was 100% more than Marie (oh, we are such fun-loving people to hang with...)

In the end, we booked using a method called hotel bingo. The deal was we did not get told which hotel we would be at BUT we were guaranteed a 5-star week for the price of a 4-star holiday. It worked well. We were met at the airport, shepherded onto a bus, and when we got to the hotel were fitted with a plastic bracelet which gave us free access copious quantities of food and drink. Two surprises: I took far more advantage of the latter than I had expected, and the other guests took far less, which together made for rather an idyllic time.

We had worried that we might get bored stiff sitting round the pool all day doing nothing, but we weren’t and we didn’t. We booked 3 trips: an outing in a ‘submarine’ to look at the spectacular coral reefs, a boat trip to the nearby marine national park Ras Mohammed where we snorkeled at three sites, and a jeep trip across the desert to another great snorkeling site.

I restricted myself to two episodes of snorkeling. It was spectacular, and our guide took pity on me and appointed himself my outboard motor. So I held on to a rubber ring while he swam ahead dragging me though the water at impressive speeds – I could have water skied behind the bloke. Anyhow, after the first two dives I decided enough was enough. While gravity made getting into the water ever so easy, the reverse was a bit more challenging...

Anyhow, we are now back in the flat land where it is damp and chilly, but where the cat was ecstatically happy to see us. Ahhh.