Good news and bad news

MARIE: We're back from hospital, now with the duodopa pump. It went well, on the whole. The specialist nurse is an absolute marvel, very knowledgeable and personable and magically available. Most of the others were kind and efficient, though rushed.

On the first day, Jon got a tube stuck up his nose, down his throat and into his stomach. That was, as promised, the nastiest part of the entire experience (especially since the procedure had to be repeated twice for technical reasons). That done, a few days were spent teaching us to work the buttons on the pump and fiddling with the dosages, which can be very finely tuned. There is a morning dose to get Jon started, a background dose throughout the day and evening, and an extra dose that can be taken as needed in anticipation or reaction to anything stressful or strenuous (such as having a shower or going shopping).

That settled, everything when quiet over the weekend, with surgery set for Monday morning. As lots of people were sent home or sent on for the weekend, I managed to get Jon moved to a window slot for an excellent 6th floor view of snowstorms over Copenhagen.

Surgery was to insert the PEG tube through which runs the inner tube delivering drugs direct into the duodenum, which is where L-dopa is absorbed. All went well and Jon was soon back in his room. He was fine a first, but when the local anesthetic wore off, it got pretty uncomfortable. So they gave him morphine for the pain and left a sleeping pill on his bedside table, just in case. The trouble was, he woke up about 3:30 am and took the sleeping pill - far too late, of course. So that first morning was quite scary. His blood pressure was ridiculously low so his legs simply gave way several times, and he talked the most complete nonsense. I was very glad to have both the specialist nurse and my sister, who is also a nurse, there to deal with the situation and assure me it was a passing problem. Indeed, after a very long nap, Jon was entirely himself again.

So after a few more days of pump training, now focused on maintenance and cleaning, Jon was discharged. We were perhaps a bit nervous the first day or two at home, but now begin to feel really quite comfortable about the workings and effects of the pump. It is definitely a relief to just have to handle it mornings and evenings (it comes off at night) instead of having to deal with pills every two hours. And although the dosages may need to be adjusted slightly, the symptom relief is clearly very much better and especially very much more reliable than what Jon got from the pills.

So that's the good news. The bad news is that sorting out the biggest problem, i.e. the physical symptoms of Parkinson's, allows the second-biggest problem, the cognitive symptoms, to be seen more clearly. They've been a big concern for me for some time, and I believe Jon is now getting an inkling of the extent of his impairment. That must be frightening, frustrating, infuriating, intolerable. And what is he to do with those emotions, where is he to direct them? My way, is the answer.

He's been really quite unpleasant to me recently (but fortunately not to anyone else). It's been mostly verbal and mostly of a passive-aggressive nature, but earlier today he actually shook his fist in my face as if to punch me. I didn't think he actually would, but it’s an escalation of frustration and the inability to express it which could conceivably in time lead to worse.

What with the pre-treatment stress, the ten days in hospital and now the holidays coming up, we have spent far to much time grating on each other. I hope that a bit of physical distance in the new year will put us on a more even keel. To that end, I have arranged to borrow an office nearby two days a week for a writing project. With the three days Jon is out at the Oak House or with his "butler" that means we'll get several hours apart every weekday. I hope that's enough.

PS: Jon has seen this post and accepted that I upload it, but does not want to comment.

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.

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…

It’s social life, Jim, but not as we know it

MARIE: We’re at the start of a busy summer of visits from family and friends, mostly ‘Jon’s people’ a few at a time for longer stretches and ‘my people’ in brief hordes. Looking at the calendar, there’ll never be more than 6 days between visits from now and until at least early October. This is a cause for much joy and celebration (and overeating), because it’s wonderful that these lovely people want to spend time with us in our rural exile-idyll.

But with Parkinson’s in the house with us, it’s not as easy as it used to be. Jon is slow to get started in the mornings and I need to be on hand to help, even if the help turns out not to be necessary some days. Jon also needs regular breaks, when we’re out and about he needs to sit and rest every so often, and when we’re home he zones out in his comfy chair or goes for a little lie-down. Late nights are a thing of the past, especially if he’s to be functional the next day. But within those constraints he does hugely enjoy these visits from home.

For my part, I feel the absence of an active co-host. We’ve chosen our families wisely and each and every one of them is helpful and thoughtful, nevertheless I almost invariably find myself first to rise and last to bed. Plus there’s the planning and shopping ahead of visits and the cleaning and laundry after. That said, I too love the visits and wouldn’t miss them for the world.

A compromise has to be struck between the demands of Parkinson’s and our guests. This is an evolving negotiation with no permanent solution possible as the disease develops, but for now the ground rules are that guests must stay in the delightful dungeon we have kitted out for them until 10 am, must sort themselves out for breakfast, and must not expect anything to happen in a hurry. Plus the more help we get with the cooking and washing up, the happier I am.

Last week’s visit from Jon’s son and daughter-in-law was the first visit of the summer and (weather aside) it couldn’t have gone better. Not only was I relieved of cooking half the time, they also helped us shift furniture, fix computers, burn garden rubbish etc. etc. On top of which we made some interesting excursions, including a day out at a large hole in the ground that Jon’s been wanting to see for ages. I hope the kids enjoyed it as much as we did.

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!

Bionic man

JON: As you know, I’ve been considering getting a Duodopa pump. I was initially slightly nervous about the surgery etc., but after much research I am now looking forward to getting it fitted. I told the neurologist so earlier this week, and she has set the ball rolling with departmental patient review meetings, pre-hospitalization tests, counseling from a specialist nurse, and much else besides. Marie asked how long the process would be and got the beautifully imprecise response that “this could happen quite quickly, really” – which we take to mean that with luck I’ll just about get it done this side of Xmas.

There is a saying that if it looks too good to be true, then it probably is. The pump certainly looks good from a symptom relief perspective, but there are numerous practical snags with the device: the entry point of the drug delivery tube into my insides must be kept meticulously clean, the drugs must be kept refrigerated at all times and have limited shelf life, the external unit I’ll have to carry around weighs about a pound, maintenance of the PEG tube sounds a bit complicated, the batteries need to be regularly changed, and much else besides – but comparing the before and after, there is no doubt in my mind that life will be better with the pump. All this was confirmed by the pumpees we met at their annual bash last month.

Rather than me trying to describe the pump, I’ll give you links to a pair of YouTube clips: The first video shows the effects of Parkinson’s and the efficacy of the standard treatment. In the second video we see the effects of using the Duodopa pump, and they are impressive. One of the patients agrees to switch off his pump, so that we can watch him crumble from a perfectly normal person into a frozen wreck unable to control his fingers sufficiently to restart his pump.

I’m like that some mornings. I want the pump to make that frozen, miserable me GO AWAY.

Balancing acts

MARIE: Did I mention that I’ve been going to see a psychologist? There was a small problem with anger management…

I think Jon and I did pretty well with the PD diagnosis, we ‘passed the test’ and found a reasonable way to live it. The dementia is harder. The way the symptoms started, baffling, sporadic, unconnected – well, I just took that as Jon being difficult and negative and unengaged. So I’d get upset. And because I was terrified that there was no improvement in sight, my upset had to be forceful enough to keep the lid on a maelstrom of fear and loneliness. My anger was explosive, volcanic, uncontrollable – and deeply unpleasant for both of us.

The dementia diagnosis made sense of much that had been confusing and frustrating, and made it clear that my anger needed to be dealt with ASAP. It’s unpleasant, though possibly understandable, to shriek like a banshee at your husband for yet again having forgotten what he’s just promised to do, but it’s horrendous and destructive to savage a man with dementia for his poor memory.

Something had to be done. Just getting the referral and making the appointment was a relief as we both acknowledged that there was something pathological both in the object of my anger and in the expression of it.

It is amazing how few appointments it has taken to restore equilibrium. I’ve been six times and expect the seventh to be my last. I’ve learnt to identify the ‘dysfunctional thoughts’ that trigger my anger, to take a step back and observe them in the cooler light of common sense. I’ve learnt that I don’t have to hide my fear and sadness behind a mask of anger, but can open up to those close to me without breaking (them or me). And I’ve learnt to carve out a space for myself away from all thoughts of disease (this revolves around my garden and a beekeeping course – whatever floats my broccoli).

I have also read and re-read an excellent and very practical book of advice on caring for dementia in a way that keeps both parties happy and content – I highly recommend Contented Dementia by Oliver James. It’s focus is on Alzheimer’s, but the advice also applies to other dementias.

Calm has again descended on our household. Not some otherworldly, anesthesized calm, but a normal, everyday calm that enables me to be mildly miffed at Jon in a perfectly normal, unthreatening way and that leaves him feeling, I suspect, slightly put-upon rather than cowering in a corner.

Not everyone with PD gets dementia, though it does happen to many in the late stages of disease – we were just particularly unfortunate that Jon got it so early on. At least now we finally seem to be finding the same kind of balance with dementia that we managed to find with Parkinson’s. Not a moment too soon.

Numbers

JON: This week it was my birthday – for the 59th time! The only bright spark is that at least it’s not 69. In fact, a recent article in the New Scientist about the popularity of various numbers said 42 was most people’s favourite number (presumably courtesy of The Hitchhiker’s Guide to the Galaxy where ‘42’ features as the answer to the meaning of life, the universe and everything). ‘69’ came second favourite, probably because the rude connotations appeal to small boys of all ages and genders.

I’ve been working for days on turning my 59th birthday into a good rude joke involving the number 69, but I’m stuck. In fact, I used to enjoy swapping jokes and banter with people, and I think I was funny (at least to highly intelligent native speakers of English, and occasionally to Marie). However, I think I have become unable to tell jokes properly. I find myself delivering the punch line first, miss out essential parts of the joke, rarely manage quick banter – and I just don’t think I’m that funny anymore.

Why? I suspect two factors: progression of the PDD, and / or the lack of an audience. The people I hang with at the Oak House may be incredibly funny, but how would I know without speaking Danish? But I doubt it, they generally seem like a fairly dull bunch. Places like this are known as ‘Gods waiting rooms’, i.e. places where we go and wait to die (another potential joke lurks in a mispronouncing ‘to-die’ to sound like ‘today’ – ho ho ho, aren’t I the witty one?).

I think I’m beginning to settle in at the Oak House, though. I’ve formed a plan together with one of the regulars to produce some artwork to decorate a large wall in the kitchen with a new molten wax technique (well, new to me, anyway). I think I’ll enjoy that.

I have also been made a guide to the Oak House for a potential new ‘inmate’. As I may have mentioned, Marie attends every meeting relating to Parkinson’s or dementia in a 100 km radius. At one, she met a nice couple from the next village. The wife is ‘normal’, the husband has early-onset dementia. Somehow I’ve agreed baby-sit at his first visit to the Oak House, show him around and make him feel comfortable. A bonus is that he has lived for many years in Britain so is potentially someone easy for me to talk to.

He was inducted during our pre-Easter celebrations, a day starting with enormous pastries to celebrate my birthday, followed by an excessive lunch with beer and schnaps. At home waited the promise of a birthday dinner consisting of a HUGE steak, a small amount of salad, and as much apple crumble and custard as I could possibly eat.

I’m told many Parkies go off their food because all the drugs can give you nausea, but that has happily not happened to me (yet?). But I do regularly increase my intake of red meat by viciously biting my cheeks. PD has got to be at fault there somehow, though I’m not at all sure if anything can be done about it.

ON and OFF

JON: Since my last post, I’ve been soldering on – no, not a typo: I’ve actually done some soldering which has come out OK, or more than OK if I say so myself. Of course these things are binary, it either works or it doesn’t, and this time it worked at the first attempt. So my fine motor skills seem to be OK as do my cognitive skills (to me, at least…).

I’ve also done some painting and photography. I’m rather pleased with the photographs, less so with the painting. But I’ve only done a short course on painting this winter and my work compared fairly favourably with that of the other students. Actually, my paintings weren’t great by any measure, but I have the excuse that while each lesson ran from 6:30 pm to 9:00 pm, my medication effect rarely lasted much beyond 8:00 pm. The photography, however, is a long-standing interest, so I feel more competent with that. Attached are a couple of my pictures – it may not be high art, but I like them.

Admittedly, though, the last week or so has been on the unpleasant side. I take my drugs at the correct time, but some times they don’t work. With increasing frequency they fail to take effect at all and I’m reduced to shuffling along like an old man (OK, maybe I am an old man). Thinking becomes hard, muscles become weak, I ache and find it hard to remember that I will feel better soon.

My brain let my body down twice last week. On Monday morning I was fine when I got on the bus to the Oak House day centre, but (expletive of you choice here) felt utterly shattered when we arrived. I took an extra dose of L-dopa, slept for over an hour, and eventually started to feel better.

On Friday afternoon, things were reversed. I had a good day at the Oak House and got on the bus to go home feeling fine, but after being bumped around for what seemed like several hours but was in fact less than 20 minutes, I almost had to crawl to get to the front door. Once inside, I just flopped, took some quick release L-dopa, went straight to bed and just lay there waiting for the pills to kick in – repeating my little mantra of ‘it will get better’ and as always it did get better. But the waiting is the worst.

It turns out that it’s not uncommon for the effect of the Parkinson’s drugs to become erratic. So now I’ve been offered to have a duodopa pump fitted that will deliver the L-dopa more smoothly. It seems to have some pros and cons. On the plus side it allows a fine control of the L-dopa, but on the minus side as far as I can tell a PEG tube would be inserted through my skin and directly into my stomach and left there. I’ll presumably get a switch, or possibly a knob, to control the dosage. Marie seems quite taken with the concept of gaining an extra appendage, though the maintenance is a slight worry.

We’re going to an information day with lots of people who have lived with the pump for years, so I’ll know much more before it’s decision time. Watch this space.

Picking a fight?

MARIE: Have I mentioned that I’ve had a sore shoulder for a few months? It seems more than a little peevish to talk about my minor inconvenience in view of Jon’s rather larger troubles. But as I have discovered that one stems directly from the other, I’ve given myself a license to whine.

My right shoulder has been bothering me since summer, really, a nuisance when I wanted to reach, push or carry, and with reduced range of movement – to the point where Jon not so grudgingly had to take on responsibility for bra removal each night. The poor man, he has to do everything!

Our GP eventually sent me to an orthopedic surgeon who diagnosed a ‘frozen’ right shoulder and gave me a remarkably unpleasant injection of steroids to deal with the semi-permanent infection in the joint, then directed me to the physiotherapist for follow-up. As the right shoulder slowly got better, the left one felt neglected and started to act up, so had to be given the same treatment. Both are now on the mend, though I expect to get to know my physiotherapist considerably better before I’m back to normal.

So what’s that got to do with Parkinson’s? Well, the surgeon and the physio agree that my troubles almost certainly stem from helping Jon – the firm hand under his arm when we’re out walking, pulling and pushing when he needs a hand to get up, and standing in awkward positions when helping him dress and undress. It’s also quite likely that the mental stress of dealing with the dementia diagnosis isn’t helping – I have a history of stress settling in my shoulders.

Spouses of chronically ill people are generally prone to suffer from more health problems than those with well spouses. That’s related to stress (both physical and mental) and to a tendency to forget to look after yourself properly because you’re too busy looking after someone else. In my case the mental stress of dealing with the new diagnosis is unavoidable BUT I feel that the physical stresses could have been easily avoided if someone had bothered to teach me how to help Jon without hurting myself.

As you know, the council now employs me as “home care help” to look after Jon (don’t get too excited, this is in lieu of the carer’s allowance you have in the UK and is about as generous). However, the contract comes with no training whatsoever. All the “professional” home care staff go through careful training, particularly about helping with transfers (i.e. shifting position, such as standing up, sitting down, turning over in bed) because it’s that’s a high-risk area with such work.

Does that make my shoulder an occupational injury, and my employer culpable for not training me in safe working methods? Not this time, perhaps, because the shoulder problem started before my contract, but maybe next time? If I’m up to it, I might make a glorious fuss if it happens again. One needs to pick one’s fights carefully, and that strikes me as one with potential mileage way beyond myself and, indeed, Parkinson’s.

The luck of the draw

MARIE: I’ve done much writing over the last month or so, but none for the blog, so it’s about time. Apart from a few grant applications to pay for local Parky events, it’s mostly been a matter of writing my chapter for the edited book of carer stories that I am working on, and writing a speech that I am giving to various politicians holding the health of the health service to ransom.

It’s been a bit schizophrenic in that, while I am presenting our own story in both cases, I’m going at it from rather different angles. In the carer book, I get very personal and perhaps at times a little intense, but I try to focus on how I or we got through various challenges that PD threw at us, how we have coped and continue to cope (with stuff we’ve also talked about here). In the speech, however, I am less personal and more general, and I am far less focused on what you can do yourself to cope and far more focused on how a lack of support services in this and that area makes one’s life harder than it has to be. It’s kind of a relief to come back here to the blog where you know everything about us already.

But the writing also made me realize how immensely fortunate Jon and I actually are, all things considered. In the speech, I go on about how I have hardly any income because I am in excellent health yet am unable to find a job because of chronic illness, and how this wretched country should have something like the carer’s allowance in Britain (only preferably at a rather less offensive rate), in recognition of the fact that forcing a carer to go out to work for purely financial reasons can have a seriously negative impact on the quality of life of both the carer and the Parky.

Just a few days after drafting that text, I met a couple in their late fifties where the husband has had Parkinson’s for twenty-some years. He worked for as long as he could, and she has worked fulltime throughout, in what sounded like fairly high-pressure positions. Now at last they are nearing the age when she can take early retirement – but it comes too late. He is now so poorly that there seems very little left of their marriage except a patient-nurse relationship.

So when I say that I can’t work because of Jon’s PD, I am clearly being a complete whimp. Other people have to work through far worse. The carer must be permanently stressed out and overworked, constantly feeling while at work that she should be at home caring for hubby, and vice versa. And the Parky must feel abandoned to an ever-changing parade of care staff, much of the time home alone feeling bored or in discomfort.

Of course we have also met lots of couples where the ‘carer’ is too old or too ill themselves to be able to take the necessary care tasks in their stride. Sure, you can get help to come mornings and evenings to help with personal hygiene, getting dressed and undressed, getting in and out of bed – but who do you call when your Parky takes a fall on the way to the loo at 3 am in the morning? What does the 80-year-old wife with high blood pressure and osteoporosis do then? Are you supposed to just fetch a cushion and blanket and leave him there till morning? Or do you knock yourslef trying to get him up and back into bed?

I am realising utterly fortunate Jon and I are that I am young enough and well enough to look after him with ease, and that he is sufficiently well pensioned to enable me to stay at home and do so. It’s a nice bonus that this also leaves me time to write about it.

Good news, on the whole

Who would have thought, as I lay innocently in my crib, that I’d end up married to a buxom Danish lady (although I stretch the meaning of ‘lady’ somewhat here), living in the middle of snowy nowhere, and – this is the strangest part – officially defined as demented. I’ve been called many names in my time, some more obscene than others, but demented is a new one.

I assume that you, dear reader, have been following our travails over the past month or so (there may be a quiz later), so you know that after many tests a neuro-psychologist told me that a) I am (or have been) highly intelligent, but b) I now have Parkinson’s Disease with Dementia, or PDD among ‘friends’. I’ve not been able to find out a great deal about PDD, but then I don’t need a book or a website about it. I now live with it all day and every day, so I’ll learn as I go along.

A plus, at least, is that we have now become eligible for respite care. This means that on a regular basis – for now, every Monday from 9 to 3 like clockwork – Marie gets a break from me, and I get a rest from the woman’s incessant nagging and planning. The respite home I go to is a ‘normal’ family house that takes 8-10 users at a time, who are supervised by three ‘staff’. The word ‘users’ is theirs. I’m sure it’s very wrong if I call us the inmates or the patients. Some of the others call the staff ‘the grown-ups’, presumably because they have to take responsibility for everything. Maybe simply ‘us’ and ‘them’ will work.

So far, I’ve only been there twice, and both times it’s been an OK experience. I had been told that around half the people there speak English to some extent, and I find that surprisingly many are surprisingly happy to speak it. But not all of the people all of the time, of course, so I also get exposed to ‘raw’ Danish for a good part of the time, which lets me relax. Actually, I think there’s a good chance that, by a process of osmosis, these demented guys and dolls will teach me more Danish than I could ever learn in my old language school. We’ll see.

In other news, I visited a friend in Glasgow last weekend. I had an excellent and exhausting time, and was pleased to find that solo air travel is still well within my capacity. In other ways, too, it was a telling experience: as agreed in advance, Marie rang me every 2 hours from Denmark to remind me to take my medicine. In one way, it was a sweet expression of affection and concern. In another way, it was just a tad humiliating, like having your mum collect you from the playground, or – as has happened to me – being made to wear lederhosen in full view of my peers (who were also five years old, but that’s beside the point).

We are now scouring the web for a portable alarm that will free both of us from the straightjacket of the bi-hourly call. The trouble is that I have a bit of a history of switching off pill alarms without actually taking the pills that I’m supposed to be alarmed about. I’ll need something loud and insistent. Something very like Marie, in fact.

Join the club

MARIE: There’s a certain type of people that, no matter how nice the individual, you really don’t want to get to know. I could have lived very happily indeed without ever having anyone present themselves at my door with the words, “hello, I’m Britta, your local dementia coordinator”. I knew she was coming, indeed I had called and asked her to come – not expecting anything concrete at this stage, just to make contact and find out how a dementia coordinator spends her days.

Britta turned out to be kind, engaged, knowledgeable and very pleasant. And contrary to my expectations, it turned out she did have something concrete to offer both Jon and me. She invited Jon to come and visit a house she runs – not, she stressed, a day centre or a social club, but a home away from home, where each day 8-10 people with varying degrees of various types of dementia spend some hours doing normal things like cooking and gardening and going for walks and having fags in the tool shed. The aim is to help the afflicted person by giving them something useful and pleasant to do in an atmosphere conducive to maintaining function for a long as possible, and to help the carers by providing us a breathing space. If Jon likes it, he could start going once a week.

For me, Britta offered a series of meetings for carers of people with early-onset dementia. It surprised me how eagerly I accepted the invitation, almost tearfully grateful that there’s a place I can go to talk to other carers who know what it’s like. That threw me. I realized that although we have told friends and family, and although their reactions have been loving and considerate, it’s not like telling people about Parkinson’s. PD may be poorly understood by those not affected by the disease, but once you explain, most people do begin to understand and imagine what life with PD is like.

Not so dementia. Life with the big, ugly D is such a taboo subject, such a frightening prospect for everyone we know. I get the feeling many people are afraid even to imagine it – do they subconciously fear to become infected by the mere thought? I can’t even talk about it to Jon, because he prefers to pretend it’s not there, and who can blame him? It threw me for the rest of the day. I had much to do, but nothing got done because I was floored by discovering this need in me to meet others living next to dementia.

I’ve just been to my first meeting and it was utterly brilliant, as good an experience as the first time we went to a Parkinson’s event. There was quite an interesting talk about support available from the local authority, but that was almost by the by. The marvelous thing was to be surrounded by people who know and understand, who don’t judge how you handle it, but who are keen to share their experiences – it lifts the heart and makes the whole bloody thing quite a lot easier to bear. I shall definitely become a regular.

No news and good news

JON: A few weeks ago, I had a spot of masochistic fun. We got up ridiculously early and drove to Copenhagen where I had the delightful experience of a lumbar puncture. I’ve had one before so I know what I’m talking about when I say that this one was very professionally done. Although it involved me sitting rather inelegantly on a chair bent over to touch my toes (to separate my vertebrae and make room for a l-a-r-g-e needle), the doctor managed to make the procedure pain free by distracting me with old jokes and a bit of banter.

All was well, at least until I got in the car to go home, where to my modest surprise the anesthetic began to wear off and my back started to hurt. Only hurt a bit, though, just enough to give me something to complain about on the long drive.

We’ll probably not get the results until my next appointment in three weeks’ time – a clear case of no news being better than urgent news, as I’m sure I would have heard if they’d found little green men discussing Nietsche in my spinal fluid. We’re not entirely sure why I had the test in the first place, actually. When Marie asked what the neurologist is looking for, there was mumbling about ‘something something tau’ which means little to us or the internet. Oh well, if there’s anything to discover, you’ll hear it here first.

From the Dept. of Good News, section Relief, come glad tidings on my genetic status. The company http://www.23andme.com/ does genetic testing to determine whether you have an increased risk of developing a number of diseases, including Parkinson’s and Alzheimer’s. This costs money, but they have (had?) a special offer for Parkies who can get the testing done free, in return for answering numerous questions for research purposes about your medical history, your drink and drug habits, your favourite colour, etc. Free is a good price, so I applied (or rather, Marie applied pretending to be me). On my part, the most arduous task involved gobbing into a plastic tube for intercontinental dispatch.

My results came back recently and show NO increased genetic risk of either PD or Alz. That doesn’t make me move any better or think any quicker, but it does stop me fretting that I’ve passed on dud genes to my children and grandchildren. There will be dancing in the streets – or there would be if I could dance. Have I ever shown you my version of the moonwalk?

All patched up

MARIE: It can be hard to see things clearly if you’re too close to them (I guess that’s why it’s always easier to solve other people’s problems), so although Jon and I both think his new Exelon patches are doing him good, we weren’t really certain how much good.

So it’s been really good to hear from several people who don’t see Jon every day that they have noticed a clear improvement in him. The physiotherapist told me Jon seems keener and is definitely quicker round the torture chamber of exercise machines, our neighbour said he’s been more cheerful lately (after a demonstration of Jon’s ballet moves), and my family who invaded us for several days over Christmas felt he is more engaged and with it.

To cap it all, he had a truly splendid New Year’s eve party. Okay, he was very slow of foot when we arrived and did have a muddled half hour early on when he told several jokes with the punch line first, but from that point on he was on an upward trajectory. A daybed had very thoughtfully been provided by our hosts – it generally really helps when Jon can have a half hour’s time-out now and again, and he’d made liberal use of similar arrangements during Christmas, but for New Year’s eve the bed remained untouched. In fact, by the time everyone else was getting ready to go home some considerable time after midnight, Jon was in his stride and could easily have stayed on.

Of course this miracle of stamina was fuelled by regular applications of drugs. Jon now takes L-dopa every two hours from 6 in the morning until 10 at night, and he just carried on with this schedule for many extra hours. That, probably in combination with the alcohol and the fags he bummed from other guests, kept him in high spirits.

The price, predictably, was that he was still flying high when we got home and didn’t get much sleep that night. In the first 24 hours of 2012, I don’t believe he managed more than 3 hours’ sleep in total – and nor did I. He got up at 6:15, turned on all the lights and let the cat out, then went back to bed. So I got up at 6:30, turned off all the lights and let the cat in, then went back to bed. So he got up and made a loud cup of tea. So I got up and had a wee. Then we both went back to bed – and 5 minutes later the first pill alarm of the day went off. Sometimes you just have to cut your losses, so we stayed up after that.

In the subsequent 24 hours Jon’s sleep ratio was reversed, and today he seems about back to normal. It didn’t use to take that long to recover from a night out when we were young and PD-free, but never mind, it’s a price well worth paying.