My new job

MARIE: “Hello, my name is Marie and I’m a carer.” What’s in a name? The difference between ‘carer’ and ‘career’ is just one little ‘e’, but the connotations are worlds apart. Tellingly, the word ‘carer’ is one that my spell checker doesn’t even recognize – I suppose that software developed initially for business purposes wouldn’t need to include such an exotic term. But that’s my job now, to be a carer.

I’ve had my own business for the last ten years, working partly on commission and partly as a consultant and freelancer. That meant I was able to reduce my workload by degrees as Jon’s PD developed – letting go a client here, dropping an activity there, and reducing my hours (and income) as necessary. Very handy, but also a slippery slope that lead me, about six months ago, to a full stop with no paid work since.

We already knew that there is a system here in Denmark, similar to the carers’ allowance in the UK, by which a family member can be paid to provide the care that would otherwise have had to be provided by the health service. I have been joking for some time that that’s how I would end my working life, but I had not expected it to come so soon.

As Jon said in his last post, he has now been offered funding for personal assistance for 12 hours per week, and I have been employed (through the local authority) to provide that care. Many concerns went into making the decision.

It’s obviously a lot more convenient for Jon to have me do the caring. Then he doesn’t have to get up and dressed when some stranger says so, or go to bed when another stranger says so, or get undressed and showered in front of a parade of short-term carers and holiday temps, or rely for his drug regime on someone with little understanding of Parkinson’s, or be unable to go for his walk until someone is due to come round and help with his shoe laces. On the other hand, I expect he worries about becoming too reliant on me. What if I break a leg? Or, worse, what if I get annoyed and stomp off?

For my part, I don’t mind any of the actual tasks involved, but together they completely fragment my day. So although I only get paid for 1 hour and 39 minutes per day, there is no way I can fit paid work around this (trust me, I’ve tried). On the other hand, I can’t see myself enjoying a guilt-free day at the office in the knowledge that Jon is home alone almost the whole time, and relying on strangers the rest of the time. I dragged him along to Denmark, and I can’t now leave him surrounded by people he can’t properly communicate with.

So the best quality of life for both of us lies in me being the formal carer. It’ll make little practical difference, there’ll be a small but useful contribution to our finances, and I can continue to do my volunteer work for the Danish Parkinson’s Association for as long as possible. So I don’t actually mind, really. In a way it’s a relief to have that side of things sorted - it’s just that, well, I’d have preferred for it not to have become official quite so soon.

Help and support

JON: The story so far … Jon, intrepid explorer of the properties of custard and kindred products, has launched an offensive to take back his brain, bowels and other body parts. Hence, the first thing I did on getting home after the neuro-psych testing a few weeks ago was to put together my oscilloscope whilst muttering darkly that “this is going to show them … dementia, HA! (mad cackle)”. So that’s the brain reclaimed, now for the other two.

If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.

The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …

Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.

That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.

In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.

Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.

Shake, dribble and drool

JON: New drugs – again. My neurologist has prescribed some new drugs, but for once these are not pills but patches (one per day) which cuts down very slightly on the number of pills I have to take each day. With luck I may stop rattling and again be able to sneak up on Marie and the cat.

If you are reading this, you have probably already read Marie’s last blog. She says that she admires the way I have taken the recent news about scary D, although she also finds it disconcerting. I just find it plain weird.

It turns out that I score around about normal in several of the tests. There is a reason for this (arrogant though it may sound): prior to the PD I had very high cognitive functions (i.e. I was pretty damn smart). And as Marie put it, the higher you are on the staircase when you start going down, the further you have to go before you hit the bottom. So now I’m down to rating as normal. Me, normal? That’ll take some getting used to.

Anyway, Marie pushed me into telling my children the results. First she wrote them, and then she made me ring them. Left to my own devices I might well have skipped that little task. I always worry that my speech will let me down on the phone, and the one thing I hate the most is sounding like a gibbering idiot. OK, you may think I should be getting used to that by now, but it’s something I’m quite ambivalent about. Is the embarrassment from appearing to be gibbering worse than actually being a gibbering idiot? And would anyone but me be able to tell the difference?

As you will have noticed from her post, Marie’s reaction to the neurological news was pretty strong. It’s as if a switch has been thrown, as if we entered the neurologist’s clinic as two healthy people, but left a few hours later as a demented patient and his carer. But I feel fine, you know, and the probability is that I will continue to feel fine. Sure, in time I may begin to shake, dribble and drool, but so far so good. The only fly in the ointment is the label on the box of patches which boldly states “for the treatment of dementia in Parkinson’s disease”. Not the most tactful bit of product information I’ve ever seen.

The process for both PD and dementia is one of gradual change. One does not suddenly become demented, it’s a slow process, with luck a very slow process. At the PD meetings we go to there are lots of others with PD. Some are doing OK and have been doing OK for over ten years, while others crumble as we watch. I plan to be in the former group.

A note on general ignorance: At my Danish language class, I did a spot of awareness raising. My target was a 17-year-old girl who just can’t get her head round the fact that there are chronic diseases that don’t get better ever. Girl of 17 to Jon: “So, have you still got the Parkinson’s, then?” Jon (rolling his eyes) to Girl of 17: “YES, of course I do.” Girl of 17: “Oh,” (smiling the bright, vacuous smile of the terminally normal), “perhaps it will get better on its own.” Meanwhile in the corridor, another well-meaning and misguided person is praying for me.

It’s all a bit much. Unlike in America, land of opportunity and an odd taste in outdoor reading matter, it seems you can’t even buy a decent machine gun here, presumably for fear the bullets might hurt some herrings.

So who's normal?

MARIE: We went up to town a few days ago for the results of Jon’s neuropsych evaluation. Not good news, as he was basically presented with a long list of things that aren’t as easy for him as they should be – like planning, executing plans, staying on track, analyzing, evaluating, structuring, those kinds of useful skills. On the other hand, he scored better for verbal skills than he expected, so that’s something at least.

Of course you can’t test whether someone’s cognitive skills have declined if you don’t know what they were like before, so the psychologist started by taking a thorough educational and work history, from which she concluded that Jon was “originally a highly intelligent male”. A rather surreal factoid is that his mental capacities are now approaching bog-standard normal, which represents a significant loss for him.

There are a couple more tests to come in the next month or two, a fresh MRI scan to compare to the one he had four years ago in Holland, and a spinal fluid sample to be tested for the devil knows what. I believe this is mainly to exclude a few unlikely unpleasantnesses. And to be honest, sufficient unpleasantness has already hit the fan. Jon is now the not-so-proud owner of a box of Exelon drug patches labeled “against Parkinson’s disease with dementia”.

He’s only been using the patches for three days so we have no idea yet whether it will help, but at least it looks like he’ll be spared the rashes that force some people to stop. It seems you start out on half dose for a month to see how well you tolerate the drug, and if no ill effects appear, the dose is then doubled. So it’ll be a while before we can report on the effect.

Jon is taking the whole thing very calmly which I admire while it also puzzles me and maybe just ever so slightly concerns me. I’m not as resigned as he is and tend to get a bit teary-eyed – occasionally also in public, which is marvelously embarrassing.

Anyway, this last bit of bad news prompted me to call our local authority to ask them to come and assess the situation with a view to offering us help of some sort. To their credit, they decided to treat the matter as urgent and are sending someone round in a few days. Whether they will offer help that comes anywhere near to being helpful remains to be seen. I’m kind of expecting an uphill battle.

Commitments

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

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

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

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

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

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

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

Wanna play?

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

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

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

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

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

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

More of that next time.

Ambulophobia

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

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

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

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

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

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

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

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

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

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

(Un)Happiness

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

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

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

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

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

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

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

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



Photo by Salim Fahdley.

Freedom

MARIE: I’ve just got back from taking Jon to the airport. He’s off to spend a week with the kids in England and I’m sure I speak for both of us when I say yippie!

We used to spend quite a bit of time apart each year before Parkinson’s invaded our lives. We both traveled for work a few times each year and also regularly took separate trips to visit family and friends. In all, we’d maybe spend a month or so apart per year.

And we both loved it. The one going away would naturally be looking forward to whatever awaited, while the one staying home cherished the chance to keep the place exactly “as it should be kept”. Jon would spend his time home alone living in what I would define as deep squalor, while he thinks I kept the place as sterile as a show home without him around to inject a bit of a lived-in feel. Anyway, we would both look forward to the going away, and towards the end of it we’d both start looking forward to the coming home. Those were the days.

Now, of course, neither of us even leaves the house to go to work. Jon doesn’t work at all, and any work I do is mostly done from home. We’ve been together 24/7 this entire summer. Okay, we have separate bedrooms because of Jon’s REM sleep behaviour disorder, but you know what I mean. 24/7. That’s a lot of hours.

There was a program on BBC radio 4 yesterday about the depiction of carers and caring in literature and music. Someone said (and I ought to have made a note of who) that caring deepens your love for the one you care for. That’s certainly true for us. I care for Jon because I love him, and each act of caring confirms the love and strengthens the bond. There were times early on when we both wondered whether we would last the distance together, but there’s no question now that we will.

Nevertheless, a break is wonderfully welcome. I’ve just re-read Hugh Marriott’s excellent book The Selfish Pig’s Guide to Caring which emphasizes the importance of respite care. Not for the sake of the cared-for person (or piglet, as Hugh would have it), but for the carer to draw breath and be a bit selfish just for a little while. I am really beginning to see the point.

With the summer holidays over, the four or so hours Jon spends at his Danish course four days a week serve as my weekly respite, and I get such a lot out of those hours – both in terms of getting things done and in terms of relaxing and not thinking about Jon for a while. As I wrote that last sentence, I realized that Marie of 5 years ago would have absolutely no idea what I could possibly mean by “having four hours off from thinking about Jon”. This caring business is a slippery slope.

So thank providence for Jon’s wonderful daughter who is doing us both a huge favour by having him to stay for a whole, glorious week. I hope they have a wonderful time together and will want to it again and again. I know I’ll have a marvelously selfish week. And I’m sure I’ll really miss Jon by the end of it. How perfect is that?

Safe hands

MARIE: Today Jon had his second neurology appointment after moving to Denmark. You may recall that at his first appointment, the neurologist concluded that he is a complicated case and decided to send him Upstairs. Not to meet celestial management, but to see the real experts at the day hospital specializing in Parkinson’s.

So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.

We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).

In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.

We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.

I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?

All change

MARIE: Jon meant to write a blog post last weekend, and he’s continued to mean to write one all week, but as you see: you’ll have to make do with me.

Why? Because he’s in the middle of a pretty sweeping drugs review. As you know, levodopa (L-dopa) is the main medication for Parkinson’s, and the brand Jon takes is Madopar. This comes in three versions: normal, quick release and slow release. For various reasons, perhaps not all of them good, when we left Holland last year Jon was getting only the quick release version. This worked well for him at the time, but there are indications that this may no longer be the case.

Because over the last few months, Jon has started to experience dyskinesias, or excessive, unintentional movements. This is a pretty common side effect of levodopa medication and indicates that there is too much dopamine in the brain – or in other words, that your medication dose may be too high. (Later on in the disease, the line between ‘too much’ and ‘not enough’ can get ridiculously fine, as in the case of Michael J. Fox.) Jon’s dyskinesias are mainly expressed as head bopping and an inability to sit still, which is annoying but not worrying, and wobbling and gyrating when standing, which scares us both as he’s come quite close to falling several times.

Admittedly, one rather more benign side effect is that Jon also gets pretty, shall we say, ‘frisky’ when he’s got lots of D in his system. We can live with that.

Jon’s new Danish neurologist found it surprising that he got only quick release levodopa and apparently suspects this may be one cause of the dyskinesias. It’s like the quick release tablets give him these frequent highs of dopamine, bam-bam-bam, while what he really needs is perhaps a steady background level of the normal tablets with perhaps an occasional quick release pill for a pick-me-up.

So, lots of changes are happening, to medication types, quantities and timings. It would have taken ages to make the changes gradually, so instead the hospital recommended that Jon should make all changes at once, and accept that this could give him some grief for upwards of a week until his brain gets used to the new regime.

As predicted, Jon went from hyper to hypo in no time. Several difficult days ensued, including an unhappy day when he needed help for everything, also getting to the toilet (he now claims to be an expert on humiliation, if not on humility), and one really bad day when he was quite out of it, both physically and mentally – very frightening, until we realized that he simply had a cold on top of everything else. He’s still a bit snuffly, but much better.

Now our task is to find a pattern in how Jon functions on the new drug schedule as compared to the old schedule, so that we can report, contrast and compare at the next neurology appointment in two weeks’ time. So far, the picture is still confused, but people are hardwired to discern patterns – even where none exist, finding landscapes in clouds, wild horses in crashing waves, and images of Jesus on burnt toast – so I’m sure we’ll have something to say when the time comes.

Scanning for signs of life

JON: One of the advantages of finally getting my CPR number a few months ago is that it magically opens doors and lets me go places – not, sadly, places like fancy restaurants or exotic holiday locations, but places like hospitals and consulting rooms where the national experts on PD are said to reside.

This is why we spent all day Friday in pursuit of pictures of the inside of my head.

5:30 am: M wakes up, waddles in to pour a half dozen pills into J
6:00 am: M, now dressed and coffeed, wakes J
6:15 am: M wakes J again, forces J out of bed and into clothes
6:45-7:00 am: J brushes teeth v-e-r-y slowly
7:00 am: M & J hit the road

At that time of day, I am quite a ways from functional, so the best contribution I could make to the drive was to snooze quietly while the radio kept M awake. It’s an hour and a half drive to the hospital (not the nearest, but purportedly the best). Not even I can snooze that long straight on top of a bad night’s sleep, so I also got to do a bit of generalized suffering with my collection of aches and pains. I’ve been told that you get used to the pain after the first 25 years.

The reason my brain scan took a whole day is that I first had to get an injection of some kind of radioactive goo, wait three hours for this to make its way to the furthest reaches of my brain, and then come back for the scan itself.

The goo was delivered by a very large needle, and when I say large I mean HUGE (not that I’m a wimp, you understand). The nurse asked me where I wanted the shot, and I said “in my wife”. We settled on my upper arm, though.

The long wait while goo percolated through me was spent shopping for lamps (no luck) and for goodies at an Asian market. We’re quite ethnically challenged out in our lovely boondocks, but I’ve now stocked up on enough English tea and Indian curry mixes to last me through the next ice age.

Then back to the hospital for the actual imaging, a DatSCAN. All I had to do was keep my head still for half an hour while machines whirred and clicked around me. Last time I had a brain scan, shortly before my diagnosis some five years ago, I had a minor panic attack due to the unbearable pain in my back. Marie was worried this might happen again, but I am happy to report that a) my back no longer hurts anywhere near that badly and b) I’m now so used to being prodded and poked that I was perfectly relaxed throughout.

Now all we have to do is wait five weeks to get the result at my next appointment. I predict they’ll diagnose Parkinson’s disease.

BTW, I just got sent a form from the Dutch pension authorities asking me to confirm that I’m alive. Marie is fairly certain that I am, and she is often right about these things. As further proof, I may return the form with a photo of me wearing a silly hat and holding today’s newspaper.

Bingo

MARIE: We went to a rather brilliant event earlier this week on non-motor symptoms (NMS) of PD. First, a scientist specialized in brain chemistry talked about how Parkinson’s affects the brain and how that in turn affects all sorts of different physical systems, and afterwards a neurologist specializing in PD explained how practicing neurologists treat the various NMS.

Jon and I have read quite a lot about PD so there wasn’t a great deal that was brand new to us, but there were lots of interesting details and ideas. One striking point is that NMS are often overlooked during neurological appointments, and that neurologists generally believe their patients are much less affected by these symptoms than the patients themselves think. Another point, which was also made at the Glasgow conference last year, is that NMS tend to affect the quality of life more than the motor symptoms do.

At the end of the afternoon, we got to take home a booklet on NMS, originally prepared by the European PD Association (which you can download for free). Good stuff in there too, but also one point that raised an eyebrow or two with us: that “new research shows that up to 90% of people with Parkinson’s have at least one non-motor symptom, and about 10% have up to five non-motor symptoms”. Either that is a case of serious under-reporting, or Jon has been spectacularly unlucky, because he certainly has more than five NMS.

From the list of about 30 recognised NMS of PD, he has (and is being actively treated for) neurogenic pain, apathy, REM sleep disorder with vivid dreams, and erectile dysfunction. In addition, he has several symptoms that are not currently being treated with prescription drugs: anosmia (reduced sense of smell), pins and needles in the legs, and a tendency towards constipation – plus Jon is concerned about signs of dysphagia (trouble swallowing) and I am concerned about his difficulties with concentration and attention.

So that’s seven definite NMS and possibly two more on the way for Jon – or, as he would say, he’s won the symptoms bingo by a mile. Or has he? We’ve met very few Parkies who sleep normally, and not many whose sense of smell is unaffected. Likewise, when you take the trouble to ask people directly about specific symptoms rather than just asking how they are in general, you often hear about poor digestion and mood issues. So I reckon Jon’s a bit unlucky with his many NMS, but not that unusual.

It’s only in the last decade or so that neurologists have started to take NMS seriously. My sister, who worked as a nurse on a neurology ward some 10 or 15 years ago, still remembers the important meeting when the neurologists called together all the staff to reveal their great new discovery that Parkies also have NMS. The nurses, of course, were thoroughly underwhelmed by this revelation as they had known about NMS for ever simply from spending time with their patients. It’s good to know that neurologists are now finally getting on board, but it will still be up to each Parky and each carer to stay informed, bring up any troublesome NMS, and insist that they are treated just as seriously as the motor symptoms.

I had a dream

JON (with apologies to Dr King and Wobbly Williams…): One of the better aspects of having Parkinson’s is that the drugs are fairly effective. Okay, I’ll never be an Olympic athlete, but if I take my 26 or so pills per day (yes, I rattle when I walk) then I am fairly functional most of the time.

At bedtime, I take a couple of Rivotril which work both as muscle relaxants against my leg cramps and, probably more importantly, are pretty effective against my REM sleep disorder. You may recall this from posts past, but to recap: during REM sleep, “normal” people’s brains switch off their bodies to only the eyes move when you dream – hence the name Rapid Eye Movement (REM) sleep. This switching off doesn’t always work if you have Parkinson’s.

What you get then is vivid dreams that you act out, with much loud talking, thrashing about in bed, and possibly sleep walking. I did all of this before I got on Rivotril. The dreams all followed a similar pattern, where I was protecting someone or something from a serious threat. Thus, I have been Obama’s body guard, have performed life saving surgery and been engaged in child protection. All important and rather stressful stuff, particularly in the middle of the night.

At least I have never attacked Marie in my sleep, though it is apparently fairly common for the REM sleep disorderly to have a go at their bed partners. On the other hand, always keen to take the path less traveled by, I incorporated extreme bed wetting into my routine – not of the incontinent variety, mind you, but where I would get out of bed, carefully position myself and then treat the mattress as a urinal. The wet would eventually wake me and I would then slink off and wake Marie so she could deal with the mess. Not a happy time for either of us.

However, this is all a few years back (it’s taken a while to get ready to talk about it). I still occasionally get vivid dreams, but instead of acting them out I now wake up, go for a wee (in the right place) and then back to my own bed – which is mine alone as I twitch and snore and need the full width of the double bed to turn over at night, so sharing isn’t really a sane option any more. Last night was a bit different, though, in that instead of waking up properly I went into Marie’s bedroom. And the conversation went as follows:

Jon: We have to talk.
Marie: What about?
Jon: Don’t be alarmed, but I really think we have to let the slaves go
Marie: What slaves?

It was only at this point that I woke and realized I’d been dreaming. Since there seemed very little point in continuing the conversation, I just went back to bed (though I did check under the bed and can confidently state that our house is entirely slave free).

A complicated guy

MARIE: Monday was a big day for us: Jon’s first visit to the neurologist in the morning, and a talk by a physiotherapist at our local Parkinson’s Disease association in the evening.

Jon had asked to be referred to Bispebjerg hospital as that is one of two centres in Denmark specializing in PD and we think Jon’s PD is a bit special. Unlike in Holland, Jon got a grown-up neurologist, and like in Holland he got a very thorough examination – we were there almost an hour and half and came away feeling that the neurologist had really taken her time and made sure she understood Jon’s case properly before making any recommendations. Very reassuring.

The upshot of it is that Jon does indeed present a somewhat complicated picture. He takes a lot of drugs in the mornings but still suffers from PD symptoms. He takes much less of the drugs in the afternoon but still ends up with side effects. Go figure! There’s also his REM sleep disorder, the apathy and off-label use of Ritalin, his dopamine agonist intolerance, and retirement from work very soon after diagnosis. All in all, not your garden variety case. So Jon is now being referred for a SPECT scan and for examination “upstairs” at the so-called day hospital which sounds rather like the excellent Dutch ParkNet centre: a place where several specialists come together to make a very thorough examination of the patient, possibly over several days of observing fluctuations in function and drug efficiency. Of course, Jon won’t actually get to go until after the summer holidays, but it’s good to be in the system at last.

The neurologist was surprised that all Jon’s L-dopa comes as quick-release tablets which is apparently very unusual and could possibly be the cause of (some of) his difficulties. He is to try exchanging a few of the quick-release tablets for the standard type and then conferring with the PD nurse over any further changes. Sounds sensible to us, and today is the first day on the new regime.

However, there’s been a worrisome development with Jon repeatedly either forgetting to take his drugs at all or taking the wrong dose. This has happened at least half a dozen times over the last few weeks. The trouble seems to be that when a drug dose is due, he’s at a low level not just physically but also cognitively. He’s already got a drug alarm on his mobile phone and a pill box with the days doses measured out and the timings written on, but this hasn’t helped. Neither of us has been able to come up with any solution other than that I take responsibility for his drugs from now on. Not really a happy outcome, but better than the diseased misery that ensues within an hour of a missed dose.

On the upside, the physio talk was excellent, very well attended, and, as it happens, organized by yours truly. Of course the recommendation was for taking lots of exercise which is bound to cause Jon some grief over the next weeks until I give up on him again, but it also got him chatting to several of the other members. A social life in the making?

Whazzup?

JON & MARIE: It has been absurdly long, a full two months, since we lasted posted anything to the blog. So long that several kind and concerned readers have asked us if there’s something (extra) wrong. Nostra culpa. Fortunately, the only wrong thing has been wrong priorities which put the blog too low on our to-do list. First there was the long visit from children and grandchildren from England, then Marie was overwhelmed by deadlines at work while Jon was exhausted from his daily (!) five hours (!!) of Danish language lessons, and lastly we’ve been traveling a bit.

Obviously, all sorts of things have happened in the meantime, far too many to go over in one post. Here are the highlights, starting with a kind and offensive question.

Towards the end of their week-long visit, we took the grandchildren on a rainy-day excursion to the small national aquarium. By this time, Jon’s energy reserves had been whittled away by constant (welcome) company and daily activities way beyond his usual routine, so he was not at his best. Instead of traipsing round marveling at the sea horses and petting the star fish, he went and sat in a quiet, dark corner. And yes, he looked tired and drawn. But did a helpful 'aquarian' really have to come up and discretely ask if Jon needed to borrow a wheelchair? The question flustered both of us. Is it really so noticeable when Jon is off? Indeed, how great is the difference between how we think we seem and how we actually appear to others? Jon decided to turn down the offer, and an hour or two later was feeling much better – and we told the kids right away, as a sort of exorcism. Let’s hope it’s a good long time before anyone asks that particular question again.

A cautionary tale concerns a drugs muddle directly related to the enormous amount of time it has taken to get Jon accepted into the local health care system. We left Holland with a small suitcase full of drugs, enough to last Jon through the spring, in the certain expectation that he would see a Danish neurologist long before reaching the bottom of his stash. How wrong we were. It is only next week, a full seven months since his last appointment in Holland, that Jon finally gets to see a Danish neurologist. The stash is almost gone, and at the bottom of it were the last L-dopa tablets Jon was prescribed in Holland – significantly, from a repeat prescription made out by a faceless colleague of his regular GP. In Holland, as in many other countries, they aim to give patients the cheapest type of medication, so we didn’t really react when Jon was given a generic tablet instead of his usual brand-name pills. It turns out, though, that these were not quick-release tablets as they should have been. It took the best (worst) part of a week of deterioration and despair (quiet on Jon’s part, loud on Marie’s) before we realized what was wrong. We now know for an indisputable fact that it is hugely important that Jon’s tablets are quick-release, and we know always to double-check what the pharmacist gives us.

An uplifting tale, sort of, is the story of how we changed a wheel on the car. It is unnecessary to tell you exactly what manner of idiocy caused us to find ourselves with a flat in the first place. What matters is that the incident clearly illustrated the frustrations of living with PD: Jon wanted to do it and knew how, but was physically unable, while Marie definitely didn’t want to do it, didn’t know how, but could be talked through the process. We are generally extremely, debilitatingly incapable of performing any DIY task together, but for once – perhaps for the first and last time ever – we performed an exemplary piece of teamwork. Nice to know it’s possible, though we’ll try not to make a habit of it.

On the upside, Marie has just finished work on her latest paid project. There is a good chance that more work will come her way from the same customer later, but then as shorter projects and not so deadline driven. Finance-anxiety may set in at some point, but for now we both enjoy the extra time – to be spent together, and on volunteer work for the local Parkinson’s association, and on/in our increasingly wonderful garden.

Comfy chairs and un-comfy words

JON: We went shopping for treats recently. This was not your ordinary chocolate and cake shopping, but shopping on the grand scale – Olympic shopping, in fact. As I may have mentioned a dozen or so times before, I have had a very stubborn case of sciatic nerve pain, which is basically a pain in the bottom. Bad news on top of the Parkinson's. Enough is enough, and action clearly needed to be taken.

Being of sound mind and scrambled body, I went looking for a chair that I can bear to sit in for more than 5 minutes. While being dragged around to places where Marie wanted to buy pointless things like towels and coffee tables and seed potatoes, I have taken every opportunity to thoroughly investigate the market for comfy chairs … and then … Marie found and bought herself a comfy chair which reclines and swivels and probably also types letters. So as not to be outdone, I too found a chair. Only mine is electrified with 2 motors: one reclines, i.e. turns the thing from a chair to a near-bed experience, while the other very cleverly raises the seat and effortlessly tips me out. All I have to do is press a button, something I still find myself able to do without assistance. The chairs should be delivered in about a month, and I can’t wait!

In other news, Marie had to go see one of her clients in Holland. The last time she visited them I was left alone and somewhat miserable at home, so this time she dragged me along. This had upsides and down sides. On the up side, I had company, restaurant meals, and British TV to watch at the hotel. The downsides were exactly the same. As a special challenge, they gave us a room with the shower over the bathtub, which meant I had to forego the continental habit of morning showers because I quite simply cannot raise my leg high enough to get into a tub in the mornings. Instead, I reverted to evening ablutions, with Marie there to assist me in and out.

The journey to Leiden gave us plenty of time to talk. Or to be more exact: it gave Marie time to talk, but that was OK because she talked about me. At least I thought it was OK until it transpired that she was in fact somewhat upset with me. I was very surprised to be informed that I subconsciously resent the fact that Marie is healthy and I’m not, and that I punish her for this by being obdurate (look it up, it’s a finely calibrated insult). I flatly deny this. But of course it doesn’t really matter if it’s true or not, our problem is that we disagree. I suspect the PD is somehow to blame and that Marie will simply have to find a way to live with it.

Her other complaint was that I don’t do the things that I can do. Of this I declare myself guilty, mea culpa entirely. It’s not that I deliberately don’t do things, it’s just that I don’t remember to do them. I need to be reminded, and I can see how the need to prompt me to do almost everything must be irritating. For this I will play the PD card (i.e. blame it on the disease). Because of the PD, I occasionally forget to brush my teeth. Me! I’m a dentist; I recognise the importance of clean teeth better that most people, and I’ve cleaned mine twice daily for over 50 years. If I can forget to brush, surely it’s no wonder I also forget to go for my walk, and collect the mail, and take out the trash, etc. etc. etc. Since shouting at me appears to have little effect, we’ve agreed to try a tick list of daily tasks on the fridge. This too shall pass…

Hollywood PD

MARIE: I’ve been writing a few articles and book reviews for the Danish Parkinson’s Association’s magazine, and now Jon and I have just produced our first joint article. The editor asked us to go see the film Love and Other Drugs, and here is what we thought of it:

Parkinson’s: the Hollywood edition

The Hollywood film Love and Other Drugs has already been reviewed in the daily papers, so most readers probably know that it’s about Jamie, an unscrupulous motor mouth of a pharmaceutical sales rep (played by Jake Gyllenhaal) who falls in love with Maggie, a laidback artist with early onset Parkinson’s and a tendency to prefer sex to tenderness (played by Anne Hathaway). The genre is rom-com. The comedy element is delivered by Jamie and his younger brother, a nerdy IT millionaire with a penchant for internet porn, while the romance appears as the relationship between Jamie and Maggie develops from an orgy of naked body parts into something more profound – and this is where PD comes in as the difficulty the lovers must surmount.

The film has had mixed reviews and has been criticized for being too kind to big pharma, to the point of being one long commercial for Jamie’s hottest product, Viagra. We don’t agree. While it is true that the film provides no exposé of the industry, it doesn’t pull its punches in the portrayal of superficial, fast talking and deeply unethical sales reps’ attempts to influence egocentric, drug addicted and disillusioned doctors.

Gyllenhaal and Hathaway both do a great job, and they are certainly easy on the eye in the many nude scenes, although that is perhaps less engrossing for a European audience than for the more prudish American home market. And yet the film feels flat. We laughed, but weren’t in tears of laughter. We were moved, but weren’t moved to the other kind of tears either. So we probably agree with the other point of criticism, that Love and Other Drugs is really two films squashed together into one manuscript: a satire on the pharmaceutical industry, and a romantic story about the difficulty of abandoning yourself to love when one partner has a chronic disease.

It is a rare treat to see Parkinson’s portrayed on screen, especially with a young PWP in the lead. It’s good that for once the disease is not delegated to a few tremulous extras at the back of a nursing home scene. It is perhaps less good that Maggie’s only symptoms are a mild hand tremor and some clumsiness, that her medication seems rather peculiar, and that she apparently has no need of a regular neurologist.

But Awakenings from 1990 (with Robert de Niro in one of his best performances), the only other film we know of about Parkinson’s disease, is no truthful document either. There is quite a gulf between the film and the reality presented in the book on which it is based, Dr Oliver Sacks’ Awakenings from 1973.

Does it matter? A cinema film only lasts a couple of hours, and Love and Other Drugs also needs to make time to be fun and a bit naughty. It doesn’t pretend to be more than it is: not great art, but good entertainment with perhaps a little bit of an edge. You don’t learn much about the symptoms of PD, but there are pretty effective (short) passages about how the disease affects every day life, relationships, hopes for the future and (self) confidence. Likewise, we liked the descriptions of Jamie’s wild hunt for a cure – on Maggie’s behalf, but without her consent – and of Maggie’s first meeting with other Parkinsonians.

At least the audience will know more about Parkinson’s Disease after watching Love and Other Drugs than one would know, say, about prostitution after watching Pretty Woman, or about paleontology after watching Jurassic Park. This is entertainment, but not just entertainment. And that’s actually good enough.

Evolution and adaptation

MARIE: We have a book called The Comforts of Home for Parkinson’s Disease which we bought quite soon after Jon was diagnosed when we were looking both for information and also, in hindsight, for reassurance that PD was quite manageable if only one followed the seven-step plan or abided by the five M’s or remembered the twelve golden rules. As it turns out (happily and sadly), books about Parkinson’s don’t tend to offer up the shallow comforts and wild promises of more main-stream self-help books.

But The Comforts of Home does give lots of very useful advice and tips, and indeed our home is turning into a PD-enabled comfort zone. We don’t want the place to look like a home for the disabled (though interestingly, it was in fact the home of a disabled woman and her husband before we moved in), but nor do we want to disguise Jon’s illness as if it was some shameful secret.

So he’s got his big floor-to-ceiling pole to help him get in and out of bed and a handgrip in the shower plus another one ready to be fitted next to the urinal when necessary. Yes, the urinal – the plumber who installed it said the only other time he’d put one in a private home was for a gay couple. But a standing wee is much easier than sitting, particularly in the middle of the night. We also went for a toilet with extra height (easier to get up off), an extra-large shower cubicle with an extra-wide door and room for a stool, and lots of bright lighting.

In the living room we’ve done away with throw rugs and just have one large rug that’s been stuck down with carpet tape to reduce the risk of tripping. The sofa has hard boards under the seat cushions to give better support, we’ve abandoned our beloved deep easy chairs because they were just impossible for Jon to get up from, and after a year-long search we have now finally found an ‘electric chair’ that both reclines and has a seat lift and even looks quite reasonable – not cheap, as the beast has to be upholstered in leather so Jon can glide frictionlessly in and out of it.

Moving into wardrobes and cupboards, bookcases and drawers we’ve tried to take into account that Jon finds it difficult to reach high shelves and impossible to reach low ones. From that perspective, the current kitchen is a problem area as most of the lower cabinets have shelves rather than drawers. Anyone would find it difficult to reach stuff at the back of the bottom shelf, and for Jon those areas are about as accessible as the top of Mt. Everest. There’s no new kitchen in our budget just now, but we should be able to scrape together the funds for a refurbishment in a few years.

All in all it’s a bit of a balancing act. When buying new stuff or doing up the house it makes sense to pick products and solutions that will continue to work as Jon’s PD gets worse, but on the other hand it’s important to keep living as normally as possible and not start relying on aids before they’re really necessary – because, as the occupational therapist says, you use it or you loose it. In that spirit of grin-and-bear-it, we’ve just been to the sales for a pair of padded ski pants for Jon so he has one less excuse for skipping the ‘daily’ walk. For some reason, the cat is terrified of the trousers and goes into immediate panic mode when he sees them. They’re hardly the height of fashion, but I honestly don’t think they’re that bad.

Things I no longer want to do

JON: I had an invitation recently to act as external examiner at a university back in the UK. My first reaction was to grab it with both hands as a sign that I can still do the sort of stuff I used to do. However, on more mature thought, and after some discussion, I decided to turn it down. Why?

1 When stressed I start to gibber, stammer and generally become hard to understand, even for those who know me well.

2 I absolutely NEED to take mid-morning and afternoon naps, or at least lie down for half an hour or so to recharge (a.k.a. let the drugs kick in).

3 If I under-dose, I slow right down and become unfit for any kind of purpose. I worry that the time change, though only one hour, could be enough to mess up my internal clock.

4 If I over-dose, I get slightly high – not a problem if I’m out being social, but hardly appropriate for an external examiner. It’s a serious responsibility to take on and should not be conducted by somebody whose poor tiny brain is liable to turn to custard every so often.

So I stayed home. And what did I do instead of examining eager young minds? Well, for many people Sunday is not so much a day of rest, but a day of DIY, and to me every day is a kind of Sunday. So do I engage in DIY? Pha! I find people’s claim that this is somehow “fun” quite absurd and possibly borderline pathological.

What we (and of course by that I mean Marie) did instead was hire a handy man for a day. He’s done a fine job, with Marie supervising. Which is something of a miracle, because whenever she and I attempt to do anything DIYish together it typically degenerates into World War III. I must admit it’s slightly emasculating to have someone else do your DIY – I used to be reasonably good at it (at least, when I put a shelf up it generally stayed up). But this way is soooo much better for our marriage and for my back.

Mind you, such good sense only prevails for a while. Marie was up in town for work the other day and I thought to surprise and delight her by stacking some of the vast quantity of firewood we’ve just had delivered. She was indeed delighted, and I suppose that goes some way towards a) re-masculating me and b) making up for my very sore muscles.

BREAKING NEWS
The Danish bureaucrats have pondered, pontificated and procrastinated and phinally decided that I am a person of sufficient worth and value that they will allow me to become a member of the Danish public. There are a few restrictions: I may not get to vote, rape or pillage, and I am to be force fed herring for breakfast, lunch and dinner until I can pronounce the Danish for ‘my postillion has been struck by lightning’. But these are tiny inconveniences compared to the great boon that is the possession of the magic CPR number that will now allow me to insure myself, open a bank account, get a doctor’s appointment and generally start living like I belong here.

Settling in

JON: We are now at the stage in our move where a daily rhythm seems to be emerging in our lives: we have soup for dinner with great regularity, sirloin steak at painfully long intervals, and pudding on Fridays, Saturdays and Sundays. And on Tuesdays we are spontaneous …

For a treat we went to the cinema to see Love and other drugs. It’s a romantic comedy with the USP (unique selling point) that the girl has Parkinson’s, and the guy falls in love with her and promises to stay and look after her for ever. Of course all we get to see from her is a few hand tremors and one OFF tantrum, but there’s also a room full of real Parkies meeting to share their experiences and shake and twitch for the camera. One of the spouses pulls no punches when he describes the advanced stages of PD to our hero. The spouse comes back later to apologize and say it’s not really as bad as he painted it – but you know and I know that it is bad, the OFF days are miserable, and even the ON days are not that great for me any more.

But none of this should come as a surprise. I am currently enjoying the literary dystopia that is Thomas Hobbes’ 1651 book The Life of Man which contains the famous passage that this life is ‘Solitary, Poore, Nasty, Brutish and Short’. The spelling might be slightly odd, but the sentiment is spot on. Admittedly, some things have improved since 1651. We now have indoor plumbing, antibiotics and content-free telly 24/7. A whole cornucopia of diseases can be treated and there are even some drugs and surgical treatments that impact on Parkinson’s. However, as you know I also had a dose of sciatica: no treatment available, just do the exercises (which don’t cure you but at least gives you something to do while you wait for things to heal).

And although L-dopa can have an almost magical effect on PD, my dose has to be increased more often than I like as the disease progresses and the drug’s efficiency decreases. At the moment, I’m still at the good days / bad days stage of my PD. Believe it or not, it has taken me five days to get the get-up-and-go to write this post, because when I’m OFF my get-up-and-go goes. At least today is a good day.

Another highlight of the week was the rental of a skip to remove assorted rubbish and all the boxes we used in the move. Normally the removers take their boxes back, but not in our case because the boxes are in the wrong country (i.e. Dutch boxes in Denmark). And since we had 3.5 tons of stuff to move, you can imagine the number of boxes. Being an idiot, I had to go and make a start on moving the rubbish into the skip which did my back no favours. Our next door neighbour once more acted as an angel of mercy, and to my amazement she and Marie filled the skip in no time. Not only that, it was done tidily with painted wood on one side and chip board on the other (this obsessive neatness may drive me to drink – I already take a lot of drugs).

There were some large sheets of wood which I was tempted to keep, partly as an excuse to get a circular saw to turn rubbish into firewood. But would my body hold up? How many fingers would I have left at the end of the first day? And would Marie use it to perform a secondary circumcision on me if I don’t behave? Discretion is the better part of valour, so I decided to let the wood go.

Meanwhile, my physio appointments continue. I spent a session trying out all the instruments of torture that they call exercise machines. I coped (rather well I thought) with most of them, though they did have one torso-twisting device that instantly recreated the pains I have when things are at their worst. There is more of this to come when I am soon to join a weekly exercise class for Parkies. It will be good to meet fellow sufferers and compare myself to them, but the exercises …

Progress, of sorts

JON: It’s been cold, very cold. There has been a thick layer of stuff all over the place, which in addition to being cold is also very slippery. What with my fear of falling and vehement dislike of getting wet, I have stayed indoors, eating, drinking but sadly not managing to be merry. As a result, I have started to get pains in my legs, probably due to a lack of movement. I don’t mean the occasional twinge but full blown, ARGH type pains.

Astute readers will remember that I have moaned about these pains before, and that I was to start seeing a physiotherapist. As it turned out, this was probably more traumatic for him than it was for me. Granted, I was in some discomfort, but the poor guy had to try to attempt to diagnose the undiagnosable (according to Doc), in English, for patient who could explain his complaints in Latin and who casually dropped into conversation that he has a Ph.D. in anatomy. OK, I was showing off about the Ph.D., but there are worse things to boast about.

Anyway, the physio pulled and prodded, asked many searching questions, and finally decided that my symptoms are most likely mainly related to the Parkinson’s. So he showed me several exercises and threatened to enroll me in the clinic’s regular Wednesday class for Parkies. Now, I am quite emphatically not the sort of man who takes exercise, but … I’ve finally become convinced that there may be something in this exercise lark, in particular the stretching which has proven helpful over the last few weeks.

And walking is beginning to be almost pleasant. At the moment, we are still at the stage of exploring our surroundings to find the best walks, and in the process I’m taking a vast number of photos of the frozen sea which has a silent beauty about it. I’m musing on getting an exercise machine so I can avoid getting cold – but will that offer up as many photo ops? At least I’m able to stretch out thoroughly and repeatedly in front of our new 40 inch TV.

The kindness of strangers

JON: It happened again, Marie left me to go Holland to do something professional and hopefully well-paid This time only for 4 days, but that’s enough time for things to go wrong. Marie left me with a full fridge, a list of dos and don’ts and a handful of phone numbers. I felt prepared for the nuclear winter that is Denmark, and things were going well until I tried to use the microwave and the kettle at the same time. A fuse blew (come to think of it, I think the seller may have predicted that something along those lines would happen). I tried saying “Let there be light” a few times, but it stayed resolutely dark. Very, very dark, although there was sufficient light to get me into bed – and in the morning there was enough light for me to see that I didn’t understand the 40 year old foreign fuse system at all.

Our next-door neigbour had said she would be happy to help out with any problems (although she speaks no English). Lots of people are happy to offer help feeling that it is very un-likely that the help will ever need to be given, but I had to take her on her word, and she was fantastic! A cursory look revealed that she too was out of her depth, but out came her mobile and within minutes her father appeared, diagnosed the problem and went off to the nearest shop (several miles away) to buy fuses, then returned and made light.

So what has all this got to do with PD? Well, had I been my old self, I would have worked out the fuse system and solved the problem myself somehow. Failing that, I would have been able to think of an alternative solution without ringing Marie in the middle of a meeting. I could have confidently strolled across the frozen tundra that is our driveway without falling and having to turn back. Indeed, I could have driven Marie to the station and therefore have had the car so been able to do my own fuse-shopping. But with PD, I now have to rely on the kindness of others. I am pretty sure that had we been new neighbours in the city (any city), I would have sat in darkness and waited for Marie to return to a fully defrosted freezer. We’ve picked a good place to live.

PS: I have now seen a doctor (as a private patient since I am still waiting for the magical CPR number that will throw open the doors to national health care) who has referred me for a X-ray of my hip and for physiotherapy while we wait. I have my first physio appointment in two days. I hope for pain relief, Marie hopes for a set of exercises she can taunt me with. I know she means well…

PPS: When I fell over in our icy driveway, to my surprise it didn’t hurt at all. Maybe the jolt of adrenalin helped, and also prevented a panic attack. Anyhow, I just stood up, no fuss, no mess, and went back to the house. With PD there will be many falls in the future, and although there was obviously some climate input involved, I’m wondering if this counts as PD fall #1?

Home alone, again...

JON: It’s a long time since we’ve written anything for the blog. We have several good excuses, of course, but simply blaming it on moving into our new house and the associated traumas and tribulations pretty much sums it up.

We exchanged keys on November 1st, and Marie moved into high gear painting every available surface and directing a large team of burly workmen in the construction of a new bathroom and assorted other heave jobs. This was supposed to be a three month project but turned into a five-week one as buyers for our old house suddenly materialized. High gear was clearly called for.

Meanwhile, I went back to Holland. This was always the plan (cat-sitting, you know), but Marie and I were both rather horrified to discover how little energy and ability I now have in the DIY department. Basically, I can keep going like a semi-normal person for a day, but will then suffer grave consequences of exhaustion, cramps and back pain for the best part of a week afterwards. Which is perhaps okay under normal circumstances, but a house move is far from normal – and so, now, am I.

I may have called several previous posts “home alone”, but this time I was on my own for longer, further and much more miserable. It didn’t help at all that I developed sciatica pains and had put my back out because we were camping out on substandard beds in Denmark. At times I could hardly walk, and at one point I had a wee panic attack when I found myself standing completely immobile in a corner. All shall pass eventually, but it’s bloody unpleasant while it lasts.

My lonely vigil in Holland also came to an end at last, and (despite a small hiccup when the removal van carrying all our earthly possessions was stuck on the wrong side of a snow storm and unable to deliver for several days) I am now finally installed in this marvelous, PD-friendly home.

I’m tempted to upload a set of pictures of the house, but that would only make you jealous… I’ll just say that we have an uninterrupted view of the sea, and ample space to accommodate visits from my two children, their partners and offspring. The cat is a bit daunted by the new place, though – small animal, very wide, white world.

Next week I’ll tell you what fun we’ve had trying to get me the elusive CPR number which is the key to open all Danish healthcare locks. Don’t go away…