Cats

MARIE: I meant to write about one of the subjects I briefly trailed last week, but you’ll have to wait for that. Because foremost in my mind this week is that our cat has died. He’s been sick with chronic kidney disease for years, only he didn’t know, so carried on regardless almost up until the last moment.

 

Weirdly, Jon and the cat got their diagnoses at roughly the same time. Jon’s came first, and although it’s obvious in hindsight how naïve we were about Parkinson’s, that naivety helped us to handle the diagnosis calmly and sensibly. But when a few months later the cat had an ultrasound (which involved shaving his stomach, and let me tell you: a cat with no stomach fur looks and feels pretty damn silly), the vet said he’d never seen a cat functioning so well with so little normal kidney tissue – and told us to expect a lifespan counted in months rather than years. That broke the dam for me, and all the angst and despair over Jon’s diagnosis came flooding out over the cat’s prognosis. I guess it was less scary to allow myself to be upset about my cat than about my husband.

 

As it happens, both the doctor and the vet were wrong. As you know, PD meds did not help Jon to live “an almost normal life” for years after his diagnosis, but the cat was still going strong six years after his death sentence. Nothing good lasts forever, though, and this week was the end of the line for the cat. As predicted, he went downhill suddenly and fast, which was a relief. When the time came to call on the vet one last time, there was no doubt in our minds that the decision was the right one.

 

Jon was at the Oak House when I realized that the kindest thing would be to take the cat to the vet, but I just couldn’t face doing it on my own. I waited for Jon, and as soon as he came home, we set off. In the car, Jon said to me that he was glad he was at least useful for something, which was really such a very sad thing to say. It is true, I do (or farm out) all the practical jobs around here, and our conversations no longer have the intellectual playfulness or depth of the old days. But I depend on Jon for emotional support (and also for laughs and physical affection, but that’s a different story). In a weird way, it was good to have the cat crisis to demonstrate that to him.

 

We took the cat home with us afterwards. I had chosen a spot under our walnut tree, and the physical work of digging the grave did me good, one last thing I could do for him. Jon didn’t have the balance to help me dig – standing on one leg and pushing down on a spade with other was way beyond him – but we did bury the cat together. And Jon has been so sweetly solicitous of me these last few days as I’ve moped around missing my kitty. Many hugs and a fair few tissues have come my way. I know it’s “just” a cat, but we had 11 funfilled and cuddly years together, so there.

 

He wasn’t a cat person when we met, but Jon now agrees that this house needs cats – in fact, I believe that cats make the difference between a house and a home.  We are thinking of getting two kittens this time, and (typical!) I’ve already started worrying how they’ll treat Jon’s constantly twitching diskinetic toes. They look like prey to me!

Pinball man

MARIE: Before you even think to ask: no, we still don’t know when Jon will get the Duodopa pump, but we’re getting impatient. I guess I’ll have to call the hospital next week – we have decided that our patience officially runs out on the 1 of September.

Since Jon got offered the pump almost three months ago (see, we have been pretty good about waiting), his hyperkinesias have got quite a bit worse, and now he suspects he may have had his first Parkinsonian fall. We expect both these problems to get a lot better with the pump, which will even out drug delivery and which can be much more finely controlled than pills.

The hyperkinesias, which are incessant involuntary movements, are a side effect of the L-dopa. Basically, Jon now has hardly any window of “normality” between too little medication (when he is slow and frozen) and too much (when he gets hyperkinetic). It’s thoroughly miserable being under-medicated, whereas being over-medicated is like being a little bit high. Guess what he prefers.

So once the drugs have kicked in sometime before midday, Jon spends the rest of the day in constant movement. He never sits entirely still, he’s always tapping a foot and nodding his head and gently gyrating from side to side on his chair. Standing up is worse, he weaves and ducks (like fellow Parky Muhammad Ali before PD) and his head wobbles like one of those dashboard toys. Sometimes its so dizzy-making, I have to grasp his face in my hands to keep it still while we’re talking – I pretend I do it to be affectionate, but we both know the real reason. At its worst, walking from one end of the house to another is a game of pinball as Jon spins and bounces off the furniture, walls and door frames.

A bonus problem is that Jon draws a great deal of attention now. It used to be that his walking stick was enough to indicate to people that he had leg issues rather than a drink issue. But now the hyperkinesias affect much more than merely his balance, I have again noticed people staring – or almost worse: very deliberately not staring – at him and wondering how it’s possible to be that drunk that early.

I’m not sure Jon’s suspected fall was caused by the hyperkinesias, it could equally well be a direct symptom of PD. Balance is very often affected, and if you move slowly you may not have time to reach out and stop the fall. Also, he fell backwards, which is very characteristic of Parky falls. At least it wasn’t dramatic. He had knelt down to take a photo of my Dahlias (or what’s left of the after the ravages of snails and slugs), and from a squatting position gently tumbled backwards to find himself “turned turtle” on the lawn, camera pointing at clear blue skies. It would be very funny, if it wasn’t also quite sad.

At the airport

MARIE: Apologies for the slight interruption in service – we have been away on each our long weekend trip. I went off in one direction to a conference, while Jon went off in the other direction to visit friends and family in England. As a result of good fortune and careful planning, we had flights out of Amsterdam within half an hour of each other. It felt very jet-setting to kiss my husband goodbye not at the train station, and not at passport control, but actually airside at the gate.

The trip also led me discover something new about Jon and Parkinson’s. A lot of people with Parkinson’s complain that when they are out in public, people treat them like they’re drunk. I’ve never really understood that – okay, the slurred speech that PD can cause does perhaps sound a bit drunk, but how can somebody walking towards you in the street know what your speech will sound like? And drunks don’t tend to shake and twist, do they? So although of course I believe what people say when they complain about being treated like drunks, I’ve never really understood how this came about.

But standing behind Jon in the queue for passport control, seeing him wobble up to the counter, and then watching as he swayed and gyrated while the officer checked his passport – now I know where the drunk thing comes from. It’s all about balance.

In addition to all the other things PD does, it affects “postural stability”, which is the ability to take up a posture and maintain it. People with advanced PD often fall because of impaired balance, and already Jon is finding it almost impossible to maintain balance when walking backwards. And, as I realized at the airport, he can’t stand still for even the 20 seconds it takes to get his passport checked. He was in constant motion, swaying a bit to the right, righting himself but then leaning to far to the left, bending the knees to lower his centre of gravity and regain balance, then straightening up and starting all over again with the gentle swaying. And he looked exactly like a morning drunk. It is heartbreaking to see, and to know that there is nothing I or anyone else can do to make it better.

Actually, it reminds me of our last trouser-buying expedition where I sat outside the changing rooms as Jon did battle with shoes and feet and trouser legs. Meanwhile, a much older man strode out of his changing room to confer with his wife over trousers and as a totally natural thing he did that deep knee bend that you do to check that the trouser legs aren’t too tight. Such a small thing, such a natural and familiar movement, and so far out of Jon’s reach. I felt a right idiot, coming over all emotional outside the men’s changing rooms. Jon isn’t the only one to make a spectacle of himself.

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.

Walkies

I continue to wake very early, between 4 and 5am, but I’ve agreed a kind of ceasefire with my insomnia: I won’t try to get rid of it so long as it leaves my sanity (largely) intact. And lonely though 4am is, that seems to be working for now.

By the time early dog-walkers begin to stir, I’m also ready for a walk. My physiotherapist says that’s the best kind of exercise for the Parkinson’s as it helps maintain balance (and confidence in balance). Does nothing for my growing pouch, but there we are. I often take my MP3 player because music with a strong beat helps me walk faster and more ‘normally’, i.e. swinging the arms and striking down with the heels, rather than shuffling along with hands in pockets to hide the stiffness. (I particularly recommend Leonard Cohen's Sisters of Mercy.) I think this effect of the beat is quite common for PD and similar to the effect of patterned floors – it is as if the clear rhythm releases some blockage in the motor system.

Mostly I walk alone, but at weekends and sometimes if I walk in the afternoon or evening, Marie comes too. She follows from the front, marching out with almost military pace and rhythm, while I limp and hobble along behind – like some chubby, middle-aged Igor. Almost invariably, she makes me go further, or faster, or more uphill, or over rougher terrain than I would have if alone. She claims this is good for me – well, she would. In some desperation, I brought my small camera along one day to give me an excuse to stop and catch my breath while pretending to admire this or that manifestation of Nature (of which Marie approves). It turned out to be rather interesting, though, and I am now building quite a collection of close-ups of bark and gnarled roots and contrasting leaves. In fact, I have punished Marie for her annoying enthusiasm by spending too much money on a new and better camera, and making her carry around a large sheet of coloured cardboard on walks in the woods so that I always have a monochrome background to hand. Serves her right, and distracts the attention of other walkers from any oddness in my gait.

I’ve even started to enjoy the walking for its own sake. It helps me reclaim body and mind when either is at risk of seizing up, and if nothing else, it makes me happy when its over. The trick to mimicking normal movement seems to be to pretend to myself that all is well and normal, but to keep my eyes firmly focused on the ground directly in front of me – because I fear that if I lose sight of where the feet go, I might fall To give the system some credit, I have never fallen yet (though there is always a first time…).