All systems are go

MARIE: At last, we have an appointment for Jon to get the duodopa pump – soon, very soon. It’ll all be done and dusted before Christmas and will be the weirdest and potentially most wonderful gift he ever got. We are nervous and excited and hopeful but not daring to be too hopeful. That’s normal, I guess.

What’ll happen is we’ll get admitted (yes, I say “we”, and if you read the post from 28th October, you'll know why) and Jon will get a plastic tube stuck up his nose and all the way down the digestive tract to his duodenum. This will be connected to the duodopa pump, so from day 1 he will be on the new medication. They leave the tube in place for a few days while fiddling with the drug dosage and checking that this method of delivery really does agree with Jon.

Then, all being well, he’ll have the operation to get the permanent tube inserted through his stomach. We were relieved to discover that this is done under local anesthetic, which is obviously a lot quicker to get over. After that, we’ll stay in hospital for up to a week while they continue to fiddle with the dose, check that everything has been installed correctly, and make very sure that we know how to look after the thing when we get home.

Jon is naturally concerned about the unpleasantness and discomfort associated with the various procedures, but feels absolutely certain that this is the right treatment to accept. I am more worried about the potential emotional and cognitive fall-out, but equally convinced that this is the right thing to do.

So, what to expect? Well, some people apparently dance out of the hospital, while for others it takes a few weeks at home before they settle down with the new routine. This is apparently partly to do with the enforced idleness of hospital life which uses up rather less dopamine than the real world. I have this idea that we should keep as active as possible while in hospital, both because of the dosage issue and because otherwise we might go slightly mad. There are lovely grounds round the hospital, but the food is dire, so I envisage many little walks, food-related excursions and perhaps, if they’ll let us out in the evenings, dinners with close family who can be relied upon not to be fazed by a man with a plastic tube up his nose.

Wish us well.

Goodbye Piccadilly, Farewell Leicester Square

MARIE: We went to London last weekend. Jon’s been itching to go to see an exhibition about the computing pioneer (and WWII code breaker) Alan Türing. After the war Türing worked at the same university department as Jon’s dad – Türing was very much the theoretician, while Jon’s dad put theory into practice by writing the very first chess software. Consequently, Jon’s dad got a display case all to himself at the exhibition, which was well worth seeing. (Jon also believes to have briefly sat on Türing’s knee as a toddler, a gratifyingly eccentric claim to reflected fame.)

Anyway, encouraged by the success of our Amsterdam trip (see blog posts past), we set off for London. The old question of whether it is better to travel than to arrive has been decisively answered by the budget airlines. After a long day involving 5 modes of transport with much walking and lugging of luggage in between, we finally arrived Friday night at a hotel near where we used to live in East London.

Saturday morning we slept in, then ambled down the high street breathing the familiar big city fumes. Jon found it more difficult than ever before to deal with the pedestrian dance of sto

p – go – lurch sharply to avoid umbrella – go – run for green light – stop for pram. He was festinating away quite alarmingly, tripping himself up, feeling his feet stuck to the ground at the wrong time. If you don’t know what festination looks like, it’s as if the upper body moves forward as intended while the feet stay behind, and then when a fall is imminent, the feet suddenly come ‘unstuck’ from the ground and rush in many tiny steps to catch up with the body. A bit of a concern around the house, and bloody terrifying in the middle of London traffic.

Happily, though, Jon survived long enough to be reunited with his daughter, son-in-law and two lovely grandchildren. We had a long leisurely lunch, then Jon had a little nap while the rest of us played outside, then another meal together, and finally a drink in the hotel bar. A long day, but an intensely enjoyable one.

Sunday was the family excursion to see the exhibition. The Science Museum is right next door to the Natural History Museum, home to dinosaur fossils and stuffed whales, and so of enormous interest to the grandchildren. In we went – Jon’s walking stick and the look on his face got us whisked past the long queue – to a museum where the collection is as spectacular as the building is noisy. Hard surfaces and high ceilings plus thousands of over-excited children was a bit much for Jon, so he and I retired to the café with grandson, where we spent a pleasant half-hour drawing imaginary butterflies and setting them loose to flutter around people’s heads. Then on to the Türing exhibition, which was small and perfectly formed. Granddaughter and I made it a particular point to talk loudly throughout about how famous her great-granddad was.

Then, and this is where we perhaps pushed the boat out a bit far, we were joined by the in-laws who had traveled for hours to enjoy a late lunch with us before getting straight back on the train. Each individual element of the day was perfectly fine, but two exhibitions and a sociable meal out on the same day is just one event too many for Jon. At the end of the meal, we said our goodbyes in the restaurant because I could see that he was just too exhausted to come along and wave everyone off at the station.

And that was basically that. We had another two days in London, but although we spent some more time walking around the old neighbourhood, we never ventured into the centre again, and spent most of our time either in the hotel room or in the blissfully music-free pub across the street. There was just no energy whatsoever left in Jon. It was the combination of the stresses of air travel (by contrast, we drove to Amsterdam), too many activities in too short a time, and (especially, in my view) the relentless sensory onslaught of such a large and busy place.

I have a theory that if you never try something and fail at it, it’s because you’re being too timid. You have to stretch yourself, test your limits, and sometimes you end up over-stretching. We used to love London when we lived there 15 or so years ago, but now we have to accept that London is simply beyond us. Parkinson’s is turning us into small-town folk and nature lovers.

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.