Commitments

JON: As I was idly leafing through the blog posts the other day, it became horribly obvious that I have not been pulling my weight in the blogging department. I have lots of excuses, some of them quite inventive, even inspired – but staying silent for almost 4 months has been a mistake. Politicos say that a week is a long time in politics, and 4 months is too long with PD. A lot can happen, and has, in that time.

As you know, I have started taking Danish lessons. These are what is termed “total imersion”, which means that the teacher conducts the classes entirely in Danish, and we poor students struggle bravely to keep up. It makes a certain amount of sense as students come from all over the place and have no common language other than Danish.

The lessons last from 8:30 am to 2:00 pm, 5 days a week … yes, you that read right: 5 days a week. Since I find myself exhausted when having to maintain concentration for more than 10 minutes at a stretch, this is…a stretch. So we have decided that I will go to class twice a week, a rather more achievable ambition. Consequently, my Danish is still minimal, and I linger at the “the cat sat on the induction cooker” stage (so don’t yet know how to say “the cat broke the induction cooker”). I feel I am making little progress, though I can see my fellow students improving steadily – though mainly improving their English during the breaks.

But what of the other days, I hear you ask. Am I off out having fun with the natives and their herrings? Well, no. Two days a week are devoted to physiotherapy, and the last weekday I spend trying to recover from the combined mental and physical strain.

I started to take physiotherapy shortly before our holiday. It is turning out to be somewhat worse than I expected (and you know what an optimist I am). I went hoping for massage, relaxation and a generally pleasant experience. How sadly mistaken I was. The clinic owns a full set of the most horrific implements of torture you’ve ever seen in black leather and brushed steel – and I’m expected to eagerly jump on these things to “work out”, because “it’s good for me”. Do I look that gullible?

And to bring you right up to date: yesterday we went to Copenhagen for a lecture on cantopedia, a subspecies of voice and music therapy. What, I wondered as I sat in my discrete corner, is an arch cynic and all-round poo-pooer of new age crap in all its myriad forms doing at a lecture given in Norwegian to a Danish audience, with the lecturer’s acoustic guitar as a teaching aid? Marie had issued a three-line whip so I couldn’t get out of going, and I am embarrassed to report that I believe there may be something in this canto-therapy.

Parkinson’s is a strange disease. We Parkies can go from full-body rigidity to fluid walking in a matter of moments with the right musical stimulus. Magic – and I mean that, because it seems to me that a fair bit of the scientific basis is still wobbly, but I can see and feel the effect for myself. I’ll tell Marie to explain the idea in her next post as I suspect she understood rather more of the Norwegian than I did.

Wanna play?

MARIE: I promised to write about Jon’s recent assessment by a neuropsychologist. Well, it was a really thorough affair, over three hours of playing one game after another. There was mental arithmetic to test working memory, Rorschach-like images to test pattern recognition, alphanumerical mazes to test planning and analytical skills, drawing test for visual acuity, odd-one-out tests for logic and reasoning, Q&As to test orientation and understanding, naming games to test language skills, and much more besides. Most tests came in several variants, so Jon would complete a test, go on to something else, and then be returned later to a similar test for confirmation.

I was there, trying to be unobtrusive in the background and following Jon’s every answer. Many were unsurprising: yes, he knows perfectly well who the US President is but no, like many a retired person he’s not entirely sure about today’s date. Yes, he’s very good at pattern recognition (image analysis was a big part of his job) and yes, he’s always been hopeless at mental arithmetic.

However. The tests also clearly show that Jon’s working memory – what people generally call short-term memory – is very poor. His ability to learn and retain new information is also much deteriorated, as is his ability to plan a task and carry out the plan. On the other hand, Jon’s language is possibly better than he thinks – he has complained of frequently being unable to find the right word, but the tests showed that he can when he focuses.

Several times along the way, Jon was told that “this is quite typical for Parkinson’s”, where not just the body but also the thought processes become slow and “stiff”. For instance, Jon had to name as many animals as he could in one minute. He started out in typical Jon-style with aardvark, which I see as a flash of brilliance, but then attempted in vain to continue with one animal staring with a B, one with a C and so on. He soon got stuck, and here comes the Parky bit: he couldn’t seem to shift gears and mentally go “okay, drop that and move on to zoos or farmyards or pet shops or …”. That kind of rigid thinking is very familiar from our everyday life, and probably as frustrating for him to live with as it can be for me to live next to

Of course these issues haven’t arisen overnight. Just like the physical symptoms of Parkinson’s, these cognitive symptoms progress so slowly that it’s quite unnoticeable from one day to the next, but pretty clear from one year to the next. Having the test show up areas of concern is actually a kind of non-event, just confirmation of what we have suspected for a little while.

As Jon said: "My brain is turning to custard, which is ironic as I happen to be a world expert on custard". We are now waiting for the written report with detailed results. Next come follow-up consultations, first with the neurologist to see if further tests are needed and if medication can improve things, and then with the neuropsychologist to hear about home therapies that may help slow the development of symptoms.

More of that next time.

Ambulophobia

MARIE: We’re just back from our holiday, and what a fine trip it was too. There is a great deal we both deplore about the US (spectacularly undemocratic practices, the celebration of greed, creationist religious nonsense– just to mention a few little things) but we’ve got to admit it’s the perfect place for a holiday if you’ve got Parkinson’s.

We traveled from Copenhagen via Amsterdam to Atlanta. At no point before we arrived on US soil did any airport employee give Jon even the tiniest bit of leeway because of his condition, but in Atlanta he was treated like royalty and whisked past queues for special assistance treatment everywhere. This focus on making life easier for anyone brandishing a walking stick continues in a good supply of disabled parking spaces everywhere and in large disabled toilets in even the most dismal fast food outlet. Plus we just love American hotel rooms where it is perfectly normal to get two double beds so we can both have a good night’s sleep.

Tourist attractions are also highly geared towards anyone suffering, as most Americans outside a few cities in the northeast do, from ambulophobia (fear of walking). Parking is provided near all sights worth seeing, walking distances and number of stairs are meticulously listed, shuttle buses are provided as an alternative to even quite short strolls, and the patience of both guides and fellow tourists for slow walkers is admirable. In the larger supermarkets they even offer to lend you a motorized wheelchair!

So we saw stuff and did stuff and enjoyed stuff. Not quite as much stuff as last time we were on holiday, though, and our planned itinerary did have to be adjusted quite early on as it became clear that Jon really can’t do more than one thing a day. So we learned to take things more slowly. Occasionally he napped in the car while I took in a museum or went for a walk in the woods or a dip in the ocean, and invariably he napped while I drove us from A to B. It worked out pretty well.

(If you zoom in really close, you might be able to see the giant fish Jon caught in the Atlantic. Him and Hemingway are as one.)

BTW, Jon had his neuropsychological exam yesterday. We need a day or two to think and digest it before posting about it. Next week.

MARIE: Well, first of all: we got the letter confirming Jon's appointments for neuropsych - and are much relieved.

Even better, I am writing this from our holiday (though burglars beware: we have a very keen cat sitter). The 8+ hour flight really took it out of Jon and it's only now, 6 days in, that he's beginning to feel normal again. Or whatever passes for normal these days.

Once again we have made it all the way through customs with more drugs than anyone has any right to need for the length of time we're away. Although we came with everything in original packets carrying Jon's name, plus copies of prescriptions and a letter from the psychiatrist who prescribed the Ritalin (which apparently has reasonable street value), it's always an anxious time when you face the customs guys. I once got in trouble for carrying half an apple, so what couldn't happen with two gross of class B tablets?

Jon has decided to spend the holiday growing a beard. He had one before I met him, and has always claimed to have remained a man with a beard in spirit. Well, it's coming back, and I think I rather like it. It'll save him shaving, which may be the real reason he's growing it, and I must admit that the idea of cut-throat razors and PD is best avoided. Here's how far he got. V. cuddly.

(Un)Happiness

MARIE: I had a really bad start to the day yesterday. I needed to call the hospital to sort out a mess with Jon’s appointment with a neuropsychologist and his next neurology appointment. This is not the first time I call about this, mind you, as we’ve received a number of contradictory appointment letters – it all stems from an initial minor misunderstanding which has ballooned, as these things do. Last time I talked to them, they assured me that Jon is seeing a neuropsychologist on 13 October and his neurologist on 7 November. We have a letter for the latter appointment, and I wanted to also have a piece of paper from the hospital confirming the former appointment.

You’re only supposed to ring about appointments between 8 and 9 in the morning, but their phone was continually engaged, even though I redialed literally once a minute. Kind of frustrating, but I thought: never mind, I’m just after confirmation, and I can probably get that from the secretary who takes over the phone line after 9am. So I rang her and was told “no-o-o, I don’t see the neuropsych appointment on the system, and actually as far as I can tell all your neurology appointments have been cancelled”.

What? But the nurse had promised me…well, she had promised all sorts of things, but only over the phone. So could I get a direct number for the nurse since I hadn’t been able to get through earlier? “No, sorry, I can’t give that out.” Okay, how about the nurse calls me when she’s free? “No, sorry, they don’t like me to promise that.” Right then, how about an email address for the nurse? “No, sorry, I can’t give that out.” Would it then be possible to make a new appointment through the secretary? “No, sorry, only the nurses can make appointments.” BUT I CAN’T GET THROUGH to the nurses! “Sorry, you’ll just have to try again tomorrow.”

I was pretty close to tears by then. Because I didn’t need this extra complication, but more so because these appointments are meant to ascertain whether Jon has a touch of Lewy body dementia which is just about the worst thing I can imagine. The secretary was nice enough and seemed to want to help, only she was unable to.

So I hung up. And broke down. As in completely and utterly broke down. I stood there in the middle of my kitchen and roared out my frustration and fear and anger – not just at the hospital, but at Parkinson’s, and at life itself for doing this to Jon and to me. It’s just as well we live in the countryside with the neighbours at some distance, or I’m sure I’d have had the police round. The cat was certainly terrified. I roared like an animal, loudly and deeply and from the very bottom of my being and my lungs, and I went on for quite a while. I guess I only stopped because my throat hurt and I was out of breath – if I’d been in better shape, I might still have been at it now.

So I had a good cry, and then I pulled myself together, because what else was I going to do?

Later in the day I sat down to read the new issue of the British PD association’s magazine which turned out to have a cover picture of a loving couple, about our age, who had stopped during a bracing walk on a windswept beach to grin happily at the camera. Do you know, that just made me furious. What the hell are they thinking, portraying Parkinson’s as a disease of happy people? They can just f… off with their grinning and their outdoor gear and their offensive happy-clappy Parky jollity, because that is nothing like the Parkinson’s we’ve got in this house – and the more happy Parky pictures I see, the more aggrieved I (am made to) feel. Yes, by all means look at the bright side and stay positive, but do try to maintain some slight connection to reality, okay?

By the way, I got through to the nurse this morning. She said she thought the appointments were actually still okay as originally agreed, even though they were admittedly showing up a bit oddly on the system. She would investigate and get back to me. I’m still waiting.



Photo by Salim Fahdley.