Error prone

MARIE: In the last post, Jon told you about his recent night in hospital for tests ahead of getting the Duodopa pump. He didn’t have a whole lot of fun there, but it served its purpose, so that’s fine. Less fine were the errors made with his medication. I had been warned to expect this by other carers, who had told harrowing stories of medication schedules horribly messed up – because hospitals like to medicate three times a day, at mealtimes, which is a) far too infrequent and rigid for many Parkies and b) just plain wrong, as Parky meds and food should be separated if at all possible.

But these stories were from non-neurology wards, nursing homes, etc. I thought that surely, in a neurology ward, and particularly one where they specialize in Parkinson’s, it would be okay, I could relax and leave Jon’s meds to the experts. Imagine my surprise when one of the first things Jon’s room mate told us was that he’d elected to be in charge of his own meds as he didn’t trust the staff to get it right every time. Huh? Was he paranoid or what?

No, as it turned out, he was right and I was wrong. In the 24 hours Jon spent in hospital, no fewer than five individual errors were made. None of them catastrophic, but all of them errors with the potential to make him unnecessarily miserable. To whit:
1. Jon's evening meds were stopped several hours earlier than agreed with the specialist nurse running his tests.
2. He was given Madopar (L-dopa) in tablet form instead of his usual capsules.
3. His back pain meds were given to a strict schedule, although they are prescribed to be taken as needed, and was the one drug not to be stopped for the duration of testing.
4. He was given only a half-strength patch of Exelon (anti-dementia drug).
5. An anti-nausea drug essential for the execution of the test was omitted.

The first three problems arose at the same time, when the evening nurse came to give Jon what she claimed were his last meds of the day, at 7:30pm rather than as agreed at 9pm (and excluding the slow-release tablet we’d specifically agreed with the specialist nurse that Jon could take to give him a decent night’s sleep). This portion contained a tablet I’d never seen before, but excluded the back pain drugs. When I queried this, the night nurse was entirely unwilling to consider that I might be right and the doctor’s notes might be wrong. She stonewalled, leaving me only the sneak’s option of quietly slipping Jon some of the meds we’d brought from home. And leaving me determined to be there every waking moment of Jon’s hospital experience to guard against further errors. Two such occurred the next morning, but I was there to point them out and the day nurse was rather more amenable to sorting things out.

Why did these five errors occur? One reason only, as far as I can see. When Jon was admitted, he first talked to the specialist nurse who gave us all the information we needed. But he then had to talk also to a young doctor, recently graduated and on rotation between wards before deciding on his special field. Jon was asked to go over all his symptoms and list all his meds. Jon finds exhaustive lists impossible, so I gave the medication info. Doc scribbled and scribbled and later transcribed into the computer that is God around there.

Now, I know I did my best to give the correct information, and I’m sure young Doc did his best too, but the details are extensive and complicated. So there were five errors made. I seriously doubt that would have happened with a more experienced doctor. But the really infuriating point is that this was not necessary. All the information on Jon’s meds was already available in the holy computer, entered there by his regular neurologist, an extremely experienced doctor with highly specialized knowledge, not just of Parkinson’s in general but of Jon in particular.

I understand that young doctors have to learn somehow and that learning by doing is a great method. But when the young Doc’s doing is my husband’s potential undoing, my understanding rather evaporates. One thing is for damn sure: I’m sticking to Jon like a burr during his next stay in hospital, the planned two weeks to get the pump installed. We’re considering the purchase of large dog basket so I can sleep under his bed.

Testing times

JON: Now that I am sat here poised to write about the last few weeks, it seems to me we’ve been very busy. We have done a load of stuff, and it might even be said that we have achieved one or two things along the way. So let’s play catch-up and see what I've been doing with myself these past few weeks, when I should have been blogging.

First and foremost, I spent two days in hospital for the last tests before a final decision about fitting me up to the much-mentioned Duodpa pump. The purpose was to rule out a less invasive solution, the apomorphine injection pen, which everyone suspected would give me nasty side effects.

Now, there are good tests (like "fill in this form") and bad tests (like "please bend over so we tap a pint of you spinal fluid"). This latest test was really quite simple, and fell firmly into the category of bad tests. First, my drugs were stopped at 8 pm, so overnight I suffered the joys of going cold turkey. I have to tell you that cold turkey is not nice, really not nice at all. Then at 8 am the next morning, I was tested on the apomorphine, which soon gave me the predicted side effects of nausea and dizziness, without giving anything much in the way of symptom relief. So that was fun too. Eventually, joyfully, I got a massive dose of L-dopa and started to feel halfway human, although I wasn’t fully myself again until the next day.

Anyway, the good news out of my 24 hours in hell is that I am indeed suitable for the pump, have been approved for the pump, and will hopefully have the pump fitted before the end of the year. As far as I’m concerned, it can’t come too soon. OK, it involves a permanent hole in my stomach, a shed load of electronics, and the loss of any remaining shreds of dignity, but it’s preferable to continuing as I am, ruled by the tyranny of pill times and pill cravings, increasingly drunk-looking in my wobbliness, and increasingly worried about falling over hard.

That was the big news. Let me rush you through the rest of our goings-on.

The book Marie has edited “for and by” carers for Parkies has been printed and delivered. You’d have thought that meant she’d finally have time to concentrate utterly on the complex requirements of my well-being, but you’d be wrong. She claims there is now much marketing and promotion work to be done. Excellent though it undoubtedly is, the book is in Danish, so only a few of you will benefit from visiting www.parkinson.dk/publikationer to buy it. And yes, that's us on the cover.

My hospital experience was lightened by the acquisition of a new friend in the bed next to mine, with a shaved head and excellent English. It turned out the close shave was because he’d just had the DBS (deep brain stimulation) operation, which means he now has a couple of electrodes in his brain connected subcutaneously to a little computer on his chest that controls the electrical stimulation. We have only slept together once, but I think we’ll stay in touch. He came down to visit us when the doctors finally let him out – just a brief pit stop before he went off to Thailand, where I expect he is now lounging on some sunny beach, the lucky sod.

Marie and I only got to go as far as Amsterdam, where we joined several hundred other Parkies in the first European Parkinson’s Unity Walk through the centre of town. It was a great day out, we got talking to old and new friends, helped make Parkinson’s visible, and enjoyed the party atmosphere at the end of the walk with speeches, music, and a salsa class which Marie enthusiastically joined. I didn’t, I have more sense than that.

Back in Copenhagen, we attended the annual presentation of research grants from the Danish PD association, during with event Marie chatted for a long time with the Duchess who is patron of the association and was later encouraged through an improvised exhibition folk dance with a random bloke who wanted to demonstrate the healing power of the musical entertainment. (Do I see a pattern forming with all this public dancing? What did I marry?)

Yesterday, Marie had a 5 am start to go up to town to help make a presentation to two Danish MPs about some subtle changes to local disability pension laws which I am happily not to be affected by. More of these political meetings are likely to follow as she hits her old activist stride.

Lastly, I have just had my first outing with my part-time butler. We went to one of my favourite photo-haunts where I spent an age getting the right shot – because I didn’t have to worry about him getting bored and fed up. He’s paid to be bored. I think this relationship can work.

Work is never done

MARIE: I wonder if well people know just how much time it takes to look after an illness? I suspect many think that people like Jon, and by extension people like me, potter round aimlessly for hours on end, get exited by the arrival of the postman, and generally live in a perpetual state of benign boredom.

That’s about as close to the truth as creationism. Our alarm clock rings at 6:30 every morning for the first pills and the start of the day. Two days a week Jon goes to the Oak House all day, two days a week to physio – at noon, because that’s when he benefits most, but it does rather bugger up the day. The last weekday often goes on other appointments, like the GP (who must be quite tired of us by now) or neurologist or Parkinson’s nurse or foot lady or social worker or (soon) psychologist. And there’s the installation of the duodopa pump soon, with two days in hospital for the last tests later this month and a further two weeks later in the year.

I have to drive Jon everywhere, and everywhere is quite far away since we live in the middle of (beautiful, cheap) nothing. What with the language barrier and my innate curiosity, I usually hang around during appointments, rather than go off like a sensible person to do the shopping or whatever.

So the only concentrated time I have for “office stuff” is the two days Jon is at the Oak House. I have a to-do list as long as back in the good old days when I got paid for this sort of thing. My list this week included these little jobs, none of which would have been necessary were it not for Parkinson’s:

• call the hospital to follow up on Jon’s test appointment – it took most of an hour to get through, but I then had a very useful half hour chat with the Parkinson’s nurse
• chase up Jon’s escort service as we have heard nothing about concrete arrangements since he was approved for the service – that’s required several calls already, and I still haven’t managed to get through to the right person
• investigate rumours that a special Parkinson’s class is being planned by another local physio – after four abortive attempts I finally reached the right person, who confirmed the plans, but says nothing is certain yet, so she’ll call me when she knows more
• spend several hours visiting two nursing homes that are potential places to live and/or go for respite care, because we are new in the area and don’t know what the various places are like, and because it’s been recommended that we (or perhaps rather: I) scout them out well before we need them, so as to avoid much (di)stress later
• do a web search to jog my memory as to the name of my psychologist, and then call to make an appointment for Jon, who wants to see if she can help him with the stress reactions that regularly bugger up his speech in shops and on the phone
• most laborious of all: make a list of everything we own in the world (and that’s well fragmented, with our history of moving around and leaving bank accounts and small saving pots all over the place) and decide what belongs to who, in preparation for making a will that is both livable for me and fair to Jon’s children – that’ll take the best part of a day

So no, we don’t get to twiddle our thumbs much. I keep thinking that if we can just get this one big thing, and perhaps those three or four minor things, out of the way, then we can relax and start working on those thumb muscles. It just never happens, there’s always something new to deal with. Just like there is for everyone else. And I suppose we wouldn’t really have it any other way.

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.

Learning curves

JON: As you may recall, we moved to Denmark with the theory that I was still capable of learning a new language at my advanced age. At first I went go to a government-funded language school, a fine institution with what claims to be an efficient method for teaching the young and able-minded amongst us. However, it is perhaps not quite such a good method for the somewhat more elderly, and definitely not a lot of use for anyone with a degenerative brain disorder which is slowly turning his grey matter to custard. I have often said that if at first you don’t succeed – just give up. I took my own sage advice and gradually dropped out of language school.

But although my “just say no” approach to failure works OK in general, I admit that it’s also nice to succeed once in a while. An aside: who is most likely to succeed? A toothless budgerigar (succeed/suck seed). It’s a dentist joke – my–o-my but we had fun whilst chiseling wisdom teeth out of jaws.

Anyway. Then we had a brain wave (well, when I say “we”, I mainly mean my thinking-brain dog, a glossy-haired bitch called Marie). What I needed was a group of people who would talk to me in Danish v-e-r-y - s-l-o-w-l-y and preferably also have a limited vocabulary. Who answers to that description? Old folks, that’s who. So I started going to the Oak House day centre for the slightly demented twice a week.

At first this was perhaps a less than perfect solution. Of the other eight or ten old guys and gals there, only two spoke a form of English, but not as she is spoke in Blighty - more pidgin, or perhaps swan. However, their English was vastly superior to my Danish, so it would be churlish to complain.

However, I recently changed the days I go there from Mondays and Fridays to Tuesdays and Thursdays. And with that change came a whole different bunch of people, so things started to perk up rather pleasantly. Here was fresh meat, or at least several new blokes, to practice my Danish on. One guy in particular speaks near-perfect English. On our first meeting, he told fascinating tales of international derring-do and seemed to be an all-round good guy, so much so that on my first day I had to wonder why he was an ‘inmate’ of the day centre. It didn’t take long to work out what the problem was, though: he has the memory capacity a concussed bee or, for the more technical of my readers, a Sinclair ZX80. So although his stories are interesting, they have a tendency to repeat on you over and over again. Fortunately, my memory is not that great either these days, so I don’t mind the repetition too much.

Now, if I could only get them to serve proper food at lunch instead of all this foreign muck…