A complicated guy

MARIE: Monday was a big day for us: Jon’s first visit to the neurologist in the morning, and a talk by a physiotherapist at our local Parkinson’s Disease association in the evening.

Jon had asked to be referred to Bispebjerg hospital as that is one of two centres in Denmark specializing in PD and we think Jon’s PD is a bit special. Unlike in Holland, Jon got a grown-up neurologist, and like in Holland he got a very thorough examination – we were there almost an hour and half and came away feeling that the neurologist had really taken her time and made sure she understood Jon’s case properly before making any recommendations. Very reassuring.

The upshot of it is that Jon does indeed present a somewhat complicated picture. He takes a lot of drugs in the mornings but still suffers from PD symptoms. He takes much less of the drugs in the afternoon but still ends up with side effects. Go figure! There’s also his REM sleep disorder, the apathy and off-label use of Ritalin, his dopamine agonist intolerance, and retirement from work very soon after diagnosis. All in all, not your garden variety case. So Jon is now being referred for a SPECT scan and for examination “upstairs” at the so-called day hospital which sounds rather like the excellent Dutch ParkNet centre: a place where several specialists come together to make a very thorough examination of the patient, possibly over several days of observing fluctuations in function and drug efficiency. Of course, Jon won’t actually get to go until after the summer holidays, but it’s good to be in the system at last.

The neurologist was surprised that all Jon’s L-dopa comes as quick-release tablets which is apparently very unusual and could possibly be the cause of (some of) his difficulties. He is to try exchanging a few of the quick-release tablets for the standard type and then conferring with the PD nurse over any further changes. Sounds sensible to us, and today is the first day on the new regime.

However, there’s been a worrisome development with Jon repeatedly either forgetting to take his drugs at all or taking the wrong dose. This has happened at least half a dozen times over the last few weeks. The trouble seems to be that when a drug dose is due, he’s at a low level not just physically but also cognitively. He’s already got a drug alarm on his mobile phone and a pill box with the days doses measured out and the timings written on, but this hasn’t helped. Neither of us has been able to come up with any solution other than that I take responsibility for his drugs from now on. Not really a happy outcome, but better than the diseased misery that ensues within an hour of a missed dose.

On the upside, the physio talk was excellent, very well attended, and, as it happens, organized by yours truly. Of course the recommendation was for taking lots of exercise which is bound to cause Jon some grief over the next weeks until I give up on him again, but it also got him chatting to several of the other members. A social life in the making?

Disappointment

I said last week that I had at last been given a magically wonderful drug that had the power to get me to sleep and keep me asleep for more than the usual hour or two at a stretch. Well, that didn’t last, and I’m now if not quite as bad as I ever was, then not a whole lot better off either. The height of your hopes is of course directly related to the depths of your disappointment, so you can imagine how I feel about that.

My body is falling apart around me. It is beginning to give me symptoms that really do not, repeat not, belong this early on in the disease. I’ve got the shakes really bad on my right side, feet stubbornly sticking to the floor, I’m hoarse and dry mouthed, my short-term memory is pitiful and I get confused over the simplest things, I have absolutely no energy whatsoever but can’t sit or lie still for long enough to get the sleep I so desperately need. Some of this might be side effects of drugs, some might be plain ageing, and some might be PD symptoms that are or aren't treatable – I just really, really wish someone would work it out and help get me on a more even keel. Right now would not be a moment too soon.

Also somewhat storm-tossed this week is my relationship with my wife. Before PD I was an uncommunicative soul. ‘G’morning’ and ‘g’night’ might be all I said to her or anyone else all day, and perhaps ‘what’s for pudding?’ on weekends. Much of the time I lived inside my own obsessive world of work and science, failing to hear phones and door bells ringing, and indeed failing to hear much of what Marie might choose to say. This state of bliss was apparently preferable to the situation now, where I follow her around like a wet dog, demonstrating my affection at every opportunity and expecting confirmation in return. Her worst nightmare: a demonstrative husband. Okay, I can see that if she chose to marry me as I was before, then she too must have been busy with her own life and this new me is perhaps not what she wanted. But honestly: females, eh? There’s no pleasing them (and apparently no shooting them either).

It all relates, though, to a question Marie asked me the other day: how do I want to spend the rest of my life? What gives me pleasure, what gives meaning and content to my life, what is realistically achievable now with PD? This is not a simple question. I always used to think I’d keep working until they barred the doors to the lab, so I am not taking that easily to the idea of early (semi?)-retirement.

Answers range from ‘If it stays like this I'm jumping of a cliff ASAP’ (though perhaps a slightly empty threat seeing that we live in The aptly-named Netherlands), via ‘Doing some good somewhere’ (as if, Miss Idaho!), to ‘Having a good time’ (but what is ‘a good time’, and can pretending life is one long weekend really have meaning?). Seriously, there are things I want to do, but I am still unsure whether mind and body will hold up to doing them. I want to write Books of Learned Science, I want to write books of lighter learning to show that science is fun and relevant to daily life. I could also see myself taking up angling – first collecting the gear and getting anoraky about flies, then the Zen of sitting quietly and waiting for something to bite. I’m quite keen on nature photography (no, the other kind of nature photography), and #2 wants me to build chicken runs and rabbit hutches for all the livestock she plans to keep and eat when we move to a larger garden.

But meanwhile, what really gets done around here? Well, I dutifully go for my walk every day, but I often “forget” to do my voice exercises and my stretches. I just about manage to stay on level terms with my e-mail intray, but there have been two articles following me around like a bad smell for weeks now, one that I am supposed to proof-read and one where I am supposed to respond to editorial critique. Well, at least I manage to get this blog done.

Which leads to my last point today. The comment has been made: if you can write this blog, things can’t be quite as bad as you say, can they? Well now, I never thought real men bothered with spelling and punctuation – that was for nit-picking, train-spotting stamp collectors (and Lynne Truss). Getting the message across was what mattered, function over form for me every time. But now my typing is so abysmal that Marie has to fix it if anyone is understand a word I write, and by mutual agreement that means she also adds in various bits of fact and background, and allows her own perspective to shine through here and there. For instance, my input for part of the above read:

I'ev become her own worst nightmare – a husand who cares, and os demostrativ e with his before the PD I was an ncomunacitive soul, g'm mornong and perhahs were the only things I'd SAYY AALL DAY, But is turns out this is preferablt to being ffolowed round like a lapdog,, ho hum females eh there is no pleasing trhem … '

You can see the kind of issues of impartiality this can also throw up… That’s a big part of the point of this blog, though, to provide a weekly opportunity for me and her to talk about what has happened, what we think about it, and why the other is wrong. Well, it works for us.