Companionship

MARIE: We’ve been immensely remiss and haven’t blogged for an age. I’ve been busy in the garden, preparing to receive a family of bees and growing my rhubarb to such a size that you must admit the leaves make my bum look positively tiny. Jon’s been busy with computer matters and still is. He’s such a nerd and claims to actively enjoy the hours and days it can take to fix a bug or get a new device functional.

There’s nothing new on the pump front. We’re not surprised but perhaps very slightly disappointed not have an appointment yet. But I guess elective surgeries grind to a halt during the summer just as the rest of society. We’ve decided to be patient until the school holidays are over. If we still haven’t heard by then, I’ll have to get on the phone.

Meanwhile, we made an application some weeks ago for an escort service for Jon. Not perhaps quite as exciting as it sounds – I understand a firm hand on the elbow is about as up close and personal as it gets – but an opportunity for Jon to get out and about without having to rely on me.

He wants to spend hours on end in electronics shops. He wants to return over and over to one particular museum to perfect his photo of one particular exhibit. He wants to go in search of the perfect desk chair, and he wants to go fishing, and maybe he wants to attend lectures in bioscience. But he does not want to wait for me to have the time, and he certainly does not want to wait for me to have the inclination. And although I want to help Jon and be available to take him places, I recognize that too often recently my other commitments have gotten in the way of his plans. That’s not right. It made him feel a bit isolated and made me feel a bit guilty.

But then I discovered that our local authority runs this service (which they wisely omit to advertise) where those with permanent disabilities can get a free escort for up to 15 hours per month. We thought it would be brilliant for Jon to have someone who can drive him places and help him find his way round and give him a hand when he gets shaky and help him remember the drugs etc. etc. etc. – basically what Jon calls a thinking-brain dog.

Yesterday was the meeting to decide on our application and to our mid-sized surprise, it was approved almost straight away. Now we’ll have to see if the local authority has a suitable escort on their books. If not, we can find somebody ourselves – perhaps someone a wee bit international from Jon’s old language school.

Government-funded freedom (for both of us) – not bad!

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.

Out and about

We attended a rather formal do this week, in the shape of a lecture at the university with reception at a fancy hotel afterwards. It was a chance for me to see a bunch of old colleagues, and Marie tagged along to keep me out of mischief. I thought I’d dress up for the occasion so wore my best black socks with the velcro-strappy sandals that are by far the easiest shoes for me to get into. My dear wife (and her gaggle of sisters) have a down on men with socks and sandals, but nobody at the do commented on my choice of footwear, so there!

I was rather concerned about having to sit through about 90 minutes of speeches and lecturing first. The thing is that when I have sat for a bit I get this uncontrollable urge to stand up – sometimes after just a few minutes, other times I can sit like a normal person for an hour or more. Of course, when the urge grabs me I can’t just stand up quietly and unobtrusively. Oh no, I need to get a firm handhold, preferably on the chairback and ponytail of the person in the row in front of me, so I can lift-push myself upwards (with a forceful primeval grunt) and then start urgent pacing to loosen up my joints. Fortunately, the gods of something or other were with me – no urges to jump up, no twitching. My only problem was staying awake…

About the urge to move, I’ve been reading Oliver Sacks’ book Awakenings (the book behind the documentary behind the film) where he tells the stories of his patients who had an ultra-severe form of Parkinson’s brought on by the late effects of a particular type of encephalitis. The book is hardly a jolly romp (and is sadly lacking in car chases) but there are a lot of things I recognize, even at my fairly early stage. These patients are so extravagantly ill that it’s like looking at (some of) my symptoms blown up 1,000 times so they become really obvious and clear. And Sacks talks about the urge to move as something quite common, matched almost exactly and horribly unfairly by the inability to move of his ‘frozen’ patients. It’s as if the muscles that have been quietly spasming along with their barely noticeable tremors suddenly need to release all the pent-up energy in big and urgent exercise. An excellent way to draw attention to yourself in a large lecture hall, so I was very relieved to get through to the reception without making a spectacle of myself.

At the reception many people that I haven’t seen since shortly after my diagnosis last year came up to me and asked how I was doing. I tried out several answers that I thought might be socially acceptable (since few people want to stand in the middle of wine and nibbles with somebody else’s truth dripping all down their shirt fronts). I had a go with ‘Much better, thank you’ – a blatant lie in view of the progressive nature of PD. But since I have developed an uncharacteristic light suntan that was generally interpreted as signalling some miracle cure, no-one called me on my lie. I also tried out ‘Much better now that the medication is working’, which is a nice little half-truth since this ‘much better’ relies on me taking 26 pills per day at various times and in various combinations, with a catalogue of interesting side effects as I’ve talked about in earlier posts. My last variation was totally truthful, yet again manages to throw a sociable veil over daily life: ‘Thank you, much better than I was this time last year’, which is when I was sky-high on far too much morphine and not yet on PD meds. But it was nice of them all to ask, and I did enjoy myself.

After an hour or so of this I felt I’d done enough and talked to all those I wanted to catch up with, so I looked round for Marie to drag me away. And bugger me, she was nowhere to be seen. I checked inside the reception room – not there. Checked the outdoor area – not there. Started to panic, festinating my way with tiny, rapid steps round the main room again like some little lost boy – and then suddenly she was there again, having just been to the loo. I was so relieved I bought her flowers on the way home (an occurrence so rare its precedents can be counted on the fingers of a mountaineer with severe frostbite). This dependence thing has the potential to get quite disturbing for both of us, but I may just save that worry for another day.