Old year, new year

MARIE: The 1st of January is a day for looking back at the past year and forwards to the new. Not sure that’s what one really wants to do with Parkinson’s and dementia in the mix, because what will you see in the past year but deterioration, and what can you look forward to but more of the same?

 

Nevertheless, the past year did include some high points, like Jon’s 60^th birthday in April when the whole family came over from the UK for an elaborate two-week celebration. He had a fantastic time and enjoyed seeing them all together, even if he did find all the activity rather challenging. My 50^th birthday in August was a shorter celebration but with far more people, so by common consent Jon opted out – which was the right decision, but sad nonetheless.

 

2013 was also The Year of the Pump, in that Jon got on the duodopa just over a year ago. It’s turned out to be more work to maintain the pump than we expected, and to be honest the symptom control is not as great as we had hoped, but all in all Jon finds the duodopa is still vastly preferable to his old oral drugs. With the latest adjustments to dosages and the latest addition of nighttime nursing services, we seem to be in reasonably calm waters Parky-wise – although rather sadly, travel has become harder now that we have come to rely on the night nurses.

 

For me, 2013 was The Year of the Book, because I spent much of the spring giving talks about the anthology of carer stories I edited for the Danish Parkinson’s association, and because I got stuck into the writing of my next book, which aims to be a collection of practical advice for carers. At the same time, I have become increasingly frustrated with the fragmented nature of my voluntary work, so have decided to ditch a number of small engagements in the new year and gather my energy into a big push in one major engagement – more of which later.

 

I expect 2014 will also be the year when we have to look seriously at our living arrangements. There are still opportunities for adjustments at home, but sooner or later we'll reach the point where it's better for both of us if Jon moves to a care center. I must admit I sometimes dream of being free from the million small and large care tasks and being free again to simply enjoy spending time with Jon, maybe going for a little walk, maybe just holding hands on the sofa while we listen to the radio. Simple things that are surprisingly hard when you feel snowed under with the practical demands of the day.

 

But I dread the decision. I know carers who waited too long, who wore themselves down to the point where they were unable to care properly at the end. I don’t want that for us, but nor do I want to end our life together too soon. I know it'll have to be my decision in the end, because the dementia stops Jon from reflecting rationally on the situation. Bloody hell, but it’s a hard one!

 

So all in all, the new year sees me in rather subdued mood (Jon not so much, he's got his happy pills working wonders). There are challenges ahead, but we are fortunate to have good support and – very importantly – understanding from our family on both sides of the water, so whatever comes I’m sure we’ll manage somehow.

Evenings from Hell

MARIE:  Almost two years ago, I gave up ‘proper’ work and was instead employed by our local authority as Jon’s carer. Back then, they assessed his needs at something like 11 ½ hours per week. There have been a few reassessments since, first to about 20 hours, then to 31 ½. Such a change in less than two years speaks unpleasant volumes about Jon’s decline and the strains his diseases now put on our daily lives.

 

The result is that I’m developing carer stress, and it’s making me less able to care in a good way. Stress (from caring or any other kind of work) makes you irritable, tired, unfocused, irritable, clumsy, forgetful, irritable … you get the picture. Recently, I was at an excellent talk by a woman who has worked with dementia sufferers for many years. One of the issues raised was how you can know when it’s time to take a step back from caring and leave it to the professionals. “When the carer is so burned out that he or she can no longer care with kindness” was one part of the answer. That’s so uncannily, precisely what I fear may be happening with us.

 

So I am taking a step back by leaving the nighttime tasks involving drugs and pump etc. to our local nurses. It happens too often for comfort that at the end of a long day of putting Jon’s needs before my own, I just haven’t the energy, physically or mentally, to deal with the madness that has become a regular feature of our evenings. What happens – not every night, but most nights – is that Jon gets one or two ideas in his head that he just can’t shake loose.

 

One is that he needs the toilet. Nothing happens when he goes, but the moment he’s back on the sofa or in bed, he feels the urge to go again. Since he moves very unsteadily at night and has epic battles to do up his trousers, this does not make for relaxing nights in. The other idea is that he wants his duodopa pump off, and he will keep nagging with increasing urgency and insistence, until he drives me to distraction or forces me from the room. The duodopa should be stopped as late as possible so that the effect of the slow release tablets he takes instead can last him until morning. At great cost to us both, we negotiated a truce to the effect that I stop the duodopa at 10:15 pm, but in the grips of his fixed idea Jon forgets the deal and forgets the logic, and I can’t reach him with reason. And seeing that I’m already irritable…

 

I’m sure there are better ways of dealing with this, but it’s clear that I can’t find them or carry them through at the end of a demanding day. So nurses to the rescue. Starting last week, Jon gets professionally nursed at bedtime, with an extra visit around 3 am for another tablet and a general check on his condition.

 

I hope that will be enough to bring us to calmer waters, at least for a time. As I write this, we are on a four-day trip away, which should have been a relaxing anniversary celebration in a wonderful German spa hotel, but is turning into yet another nightmare for entirely predictable reasons. We’ll have to accept that we simply can’t get by without nursing help anymore, and that means we can’t go away together anymore. One more loss.

 

I hope you won’t judge me harshly when I say that I want my life back. It's too much to cope with now. I’m very much afraid that this marks the beginning of the end of my time as a home carer.

Carpe diem

MARIE: As we’ve said, with the duodopa pump comes better symptom control, and with that comes a greater freedom and eagerness to participate in life. And boy, do we participate. Although Jon’s PD is better controlled now and he has almost gotten rid of the debilitating OFF states, Parkinson’s continues to nag at us to make the most of now, because you never know what’s round the corner. Could be more good, but could equally well be another downwards slide, new symptoms, drug intolerance, whatever. So we are seizing the day and carping the diem.

First, of course, was the trip to the UK that I told you about in the last post. Then last week we had a visit from two UK friends with Parkinson’s – enormously enjoyable for Jon as he turned the best room in the house into a huge electronics workshop for the duration. Also much talking, walking and eating. Sightseeing not so much, as it’s no mean feat to get three Parkies to feel up to an excursion at the same time. On the other hand, that was perhaps also the joy of it: that there was no need to pretend or to push oneself as everyone except me was in the same boat.

Next week we get a long visit from Jon’s oldest friend, and I shall take the opportunity to nip out for a few days. I’ve asked for the home nurse to come and help with pump matters morning and evening, but in between the two of them will be on their own. I think they can do it, and that Jon is eager for the independence of a few days without my constant presence. We’ll let you know how that goes.

After that comes a short visit from another foreign friend, a two-week period of staggered visits from the family to celebrate Jon’s big birthday, and then we’re off to a pump users’ meeting in a different part of the country so will take the opportunity to make a small holiday of it. Then my parents come down for the soon-to-be traditional month of hard gardening labour, we must organize a visit from our good Dutch friends, we’ve got another two domestic holidays booked and are planning another UK trip, there’ll be an invasion of nephews at some point, and also my equally big birthday later in the summer, and…and…and…

Looking at our schedule, I am torn between despairing at the amount of stuff we have planned – how on earth am I going to find the time to write the next book? – and on the other hand thinking that this is exactly the reason why I don’t go out to work: so Jon and I can squeeze every last drop of good out of life while there’s time. I may not go out to work, but I still struggle to find the right work-life balance.

 

On Jon’s part the issue is more straightforward. Yes, he has gotten rid of the horrible OFFs, but he still has unpleasant dips in his general state. These he can counteract by taking an extra dose (using what we call the ‘happy button’ on the pump), but the ideal time to take it is just before he needs it. That means he’ll have to learn to predict which activities will deplete his dopamine levels so he can act early and avoid even the smaller dips. He had quite a bad dip last week when he went out bowling with the Oak House guys. The fun of it carried him through until he had run utterly out of dopa, and it took him quite a while to get back in the saddle. But he’ll learn, we’ll learn, and meantime life is still a whole lot better than it was.

Travels with the pump

MARIE: We’ve just had a long weekend in the UK – partly to see Jon’s daughter’s new house (and family and friends, of course), and partly to test out traveling with the duodopa pump. We were both mildly apprehensive. Would we be believed by airport security when we told them that Jon now has a tiny metal part inside him and can no longer go through the scanner? Would they accept that we carried all Jon’s gel form medication in hand luggage? No way would we ever let drugs go in the suitcase, a delay or misdirection of luggage with drugs doesn’t bear thinking about. Would the drugs stay cool in their special thermal bag for the duration of the journey? And would the hotel be able to keep the drugs cool for us, yet allow easy access to fresh drugs in the morning?

I am so happy and relieved to say that the answer to every one of the questions was a clear YES. Apart from having to carry the thermal bag around – which would be quiet heavy for a long trip – travels with the pump are significantly easier than travels with pills. Going across time zones? No problem. We used to try and stretch or compress drug timings on travel days to fit both with time zones, long days, and urgent bursts of activity. Now, the meds are just constantly flowing, there’s no need to plan or discuss anything, Jon just presses the lovely extra-dose button, and off we go. Put the pump on in the morning, take it off at night, and don’t worry about a thing in between. Oh, the relief. It’s wonderful to know that we’ll be able to travel by air again without any anxiety.

Two more things helped make the trip a success. It was clear on our last trip to the UK that the whole business of travel and any lack of home comforts at the destination really wears Jon out, to the point where he hasn’t the energy to enjoy the purpose of the trip. So this time we broke it up. We flew over, but instead of getting the airport train and then waiting for a ride and then having a social situation, we simply checked into the airport hotel and stayed the first night there. We’ll definitely do that again, it’s now vastly better to have two unstressful travel days rather than one demanding one.

 

And the other thing that helped was that we swallowed all pride and asked the family for help with lifts and a really comfortable place to sleep. I have regularly suggested to other carers that they should ask for help from their families instead of waiting for people to guess at how they can help, but I’ve not been good at taking my own advice. I was really quite overwhelmed at the generous help and consideration we got on this trip, the trouble they were prepared to go to in order to give Jon the best basis for having a good time. Which he most certainly did, as did I. We’ll be back, as he’s taken to saying.

By the way, it was funny to note how un-embarrassed we have both become. This was the first time the family had a chance to see the pump and Jon’s extra orifice, so he prepared to do a little show-and-tell. I’m not sure if it was discretion or a slight squeamishness on the part of his audience, but that didn’t take long at all. I guess by now Jon and I are so used to the evidence and paraphernalia of disease that we don’t think of it as anything out of the ordinary. Maybe we need a little reality check.

 

New best friends

MARIE: Two weeks ago I wrote about the difficulties of teaching Jon to handle the duodopa pump himself, leaving me with more maintenance than I had counted on. Four weeks ago I wrote about how his frustrations at the diseases sometimes turn to aggression directed at me. I am very happy to tell you that I now have two new helpers who promise to bring relief to one issue each.

Firstly, the frustration. I know – I’ve read, I’ve been told, I can work out for myself – that someone with cognitive impairment is probably incapable of changing his behaviour. So, to stop Jon becoming frustrated, we have to find his “triggers” and teach me how to avoid them or how to deflect and defuse potentially problematic situations. To that end, I have talk to a very capable and knowledgeable woman whose job title I don’t know how to translate – something like neuro-behavioural-development consultant. What she does is go out and talk to the carers for people with problematic dementias to help us learn to act and react in more appropriate ways. All the relevant people have said this sounds like a good idea in our case, so now I’m just waiting for the paperwork to go through. I’m hoping for a long and fruitful relationship.

Secondly, pump maintenance. A further two weeks in and we’re essentially no further forward with teaching Jon the pump. I don’t have a problem with getting up to fit the pump every morning at 6:30. I don’t mind helping Jon get it on and off when he has a shower – and on those occasional mornings when I have to leave early, it won’t kill him to skip the shower. But I was beginning to feel very constrained by the need to be home every evening no later than 10pm to take the pump off. This was mostly in my head, because I’m actually rarely out till late. We’re talking maybe half a dozen times a year, when I’m invited to something that Jon prefers not to attend but that I want to attend until the very end.

What triggered my frustration was an invitation to the traditional January party of a group of wonderful women I’ve known since university. I had offered to bring the dessert, but now I was realizing that I’d probably have to leave before it was even served in order to set out on the hour-long drive home to my pump duties.

As luck would have it, that same morning we got a visit from the home nurse who comes once a week to inspect Jon’s stomach tube. I mentioned my frustration. She told me a nurse could come to sort out the pump if we liked. I asked how long in advance we’d have to book such a service. She said as early as possible to help with their planning, but “if you’re out and suddenly realize you’ll be late, or if you’re stuck in traffic or something, just ring us and we’ll pop round to sort it out”. Isn’t that just the most amazing service? I was so happy and relieved I wept!

I think we’ll use the night nurse about as often as we use the disabled parking badge, which is to say roughly once in a blue moon. But it makes the most enormous difference to know that the option is there the moment we really do need it. I feel like I have my freedom back, and I think Jon is pretty content not to have to feel guilty about dragging me away from my occasional pleasures in the big city.

Pumping

MARIE: Today is the one month anniversary of Jon getting the duodopa pump. Long enough to review the effect on Jon’s PD and on our daily lives.

On symptom control, Jon still got some dyskinesias, but nowhere near as bad as before, and certainly not to the point where it bothers him. Enough to still draw a bit of attention, probably, but we’re kind of used to that now. However, the most important point is that when I asked him if he thought the pump was worth the effort, Jon said unequivocally yes, he would crawl over broken glass for the relief it gives him from OFFs.

He used to struggle horribly in the morning, when he’d often have to wait more than an hour for the pills to start working enough that he could get out of bed. Now, he’s frequently up less than half an hour after I’ve started the pump. And with the occasional extra dose (he can take up to 6 a day), the day passes with the occasional little dip, but not a single real OFF. I don’t think any of us without Parkinson’s can quite imagine how horrible an OFF is, but I can see how much it means to Jon to be rid of them.

On the practical side, it’s wonderful to leave the tyranny of pills behind us. Admittedly, there’s a bit more to the maintenance than I expected. I knew we’d have to manage the pump, but (like an idiot) hadn’t counted on the cleaning and anointing of the entry point. It’s kind of gross, but we’re learning to deal with it.

Teaching Jon to manage the pump himself is a bit more uphill. I don’t think he’ll ever be able to set it up and connect it in the mornings because that’s when he’s at his lowest point functionally. Right now, we’re working on him getting comfortable enough with the procedure that he can disconnect it and reconnect it when he has his shower, and perhaps also look after the entry point himself. We haven’t decided yet about responsibility for the evening procedure when his tubes need flushing, so for the time being I’m handling that. We’ll take it one step at a time and see how far we get.

The last issue is ‘wearability’, and I have to admit I’m a bit disappointed with the options. The trouble is that the unit is quite large and heavy, must be easily accessible, and is attached to Jon by about 40 centimetres of plastic tubing with a large connector in the middle. Together with the pump you get the gear to carry it around your neck like a camera or as a shoulder bag, or as a bum bag, or in a shoulder holster like a gun, or in the inside pocket of a vest (the over-garment), or in side pickets of a vest (the under-garment). However, all the gear is made from somewhat unattractive materials, except the black leather shoulder holster, which is sadly the most uncomfortable to wear. We’ll be seeing a lot of other pump users at the annual meeting in April, and I’ll be very interested to see how they’ve balanced discretion with accessibility and comfort.

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.

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.

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.

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.

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.