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 …

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…

The long goodbye

JON: OK, I’ve stolen the title which normally refers to Alzheimer’s and the pain the dementia causes as the patient’s personality gets up and goes for a long walk. But as our move to Denmark gets closer and closer – with the old house now SOLD – I too am finding myself saying goodbye over and over. To my Dutch friends there are hugs and earnest promises to visit, but to my team of health professionals, all of whom have been competent and caring to a fault, it’s a real farewell as I am highly unlikely to see them again. So in no particular order, it’s goodbye to my favourite:

Physiotherapist
Movement disorder specialist
Parkinson’s nurse
General practitioner
Sleep clinic staff
Couple’s therapist
Psychiatrist
Social worker
Dietician
Psychologist
Pain clinic staff
Occupational therapist
Speech therapist
Neurologist

With friend like these, who needs enemas? I just hope that I will land with as good and dedicated a team in Denmark.

Very soon now, we will get the keys to the new house, and not for the first time by any means we will start a new life in a new country (well, new to me anyway). We should be used to it by now – Hong Kong, London, Holland, now Denmark. Moving is supposed to be as stressful as getting a divorce, but I think we have it down to a tee. Sure, it takes a lot more planning and requires an earlier start now that I have PD, but we’re pretty good at this stuff.

Next week, we meet our new neighbors – I’m keeping my fingers crossed that all will be well, particularly that the village is free of psychopaths (unlike here, where feral teenagers shot at us through the window) and fundamentalists (unlike here, where everyone knows which church everyone else attends, and knows that we don’t attend at all).

And it will be interesting to compare the Dutch and the Danish health care systems. Marie has ferreted out the name of a GP near the new house who has experience with Parkinson’s, and her sister knows which neurologist I should request. We’ll just have to take it from there. I’m sure you’ll hear all about it here.

Perhaps it's not so bad after all

JON: A number of readers took the trouble to comment on one of my recent postings. They both(!) wanted to know if my not hearing what Marie says isn’t simply a bloke thing, i.e. pretty annoying, but something you can live with. With PD, however, there is always the nagging fear that these cognitive lapses could be the precursors of something debilitating. I think I just proved that I can handle big words – but is that enough to demonstrate my cognitive health? It’s well established that short attention span and poor short-term memory can be symptoms of PD, but since they’re also established symptoms of being a bloke, I don’t suppose I can ever know for sure.

The great news of the week is that it really seems as if we have sold our old house! A contract has been signed, the cooling-off period is over, and all that now remains is for the buyers to secure a mortgage, which they claim to be confident of doing. They want the house rather sooner than we had planned on leaving it, but these days the buyer is definitely king so we’re shifting our plans to suit them. I expect much chaos and confusion will descend on us, but at least this cognitive challenge is temporary.

As it happens, the contract was signed the day before we went off to the World Parkinson’s conference in Glasgow. I’d been slightly apprehensive about going, because I didn’t really want to see people in late-stage Parkinson’s, and they were rather difficult to ignore at the WPC. But although some were in wheelchairs and others very stiff or dyskinetic, they seemed to be OK with it which was reassuring. After a while I was seeing the person and not the chair – and whilst these people represent my future, I no longer think it’s going to be too bad. I reckon I could get used to driving an electric chair – the ride-on lawn mover in the new house will be excellent practice.

Due to regulations which prevent drug companies from marketing directly to patients, we non-medic delegates were not allowed into some of the sessions which were restricted to medics, nor were we permitted in the area where medical gear was on display. Of course it was a simple matter to borrow a badge from a friendly medic and get in that way, which of course I did – but was disappointed to find the medics-only stuff stunningly dull (which may have been down to the complexity of the topic or, more likely, the poor presentation skills of the clinicians). The lectures directed at non-medics were much better.

Of course, I actually spent most of my time outside the lecture halls chatting to fellow Parkinsonians and having a fine time. What was great was that it was possible to feel completely normal. We could shake, rattle and roll and no-one batted an eye-lid – though on second thoughts, batting an eyelid is perhaps not the best metaphor…

Going cheap!

JON: As you know, we have agreed the purchase of a new house in Denmark on the 1st of November. We will obviously both be there for the ritual meter reading and key exchange, but shortly after that I will return to the Netherlands alone, where I will look after the cat, the old house and possibly even myself, while Marie will stay in Denmark to supervise work to revamp a bathroom, install a woodburning stove, paint every surface of the house, sand all the floors, etc. etc. etc. There’s a lot to be done, but if all goes to plan we’ll end up with a very habitable (and PD friendly) house.

We still have the problem of disposing of our existing house, although I am happy to report some recent and promising movement on that. There is a lovely couple who appear to be interested in the house and are coming back for a second viewing this weekend. Many questions have already been asked and the answers accepted, so there is a pretty good chance that this is it. Fingers tightly crossed!

Whatever happens with the old house, the whole projects involves regular toing and froing on the German motorways which are perhaps not the safest place in the world. Marie and I are now of an age when diseases, disasters and decrepitude are real concerns, and I must admit I do rather worry about the immediate future. What would happen to me in the event of Marie’s sudden demise on the speed-crazed bumper of a Mercedes driver? I could end up with two houses in places where I have not an iota of understanding of the legal system, the language, my rights, etc.

But that’s just me being bleak. I’ve been told by people who read this blog that I am amusing, even outright funny at times. Well, it’s not meant to be funny (at least not all the time). I’ve got a progressive neurological disease, and that’s just not a joking matter – so shame on you for laughing. If I’m miserable, then I want the rest of the planet to be miserable too! Annoyingly, though, the only person around here on whom I can attempt to inflict sympathetic misery is Marie, and she downright refuses to take the blame for my moods.

What’s a bloke to do? Maybe going to the World Parkinson’s Congress in Scotland next week will help. I like conferences, I like meeting new people and networking, and I particularly like being in places with lots of pubs.

Sticks and stones

JON: As you know, we are back from our trip to the USA where a good time was had by all. When we arrived, we allowed ourselves to be upgraded from a compact car to an SUV, and I’m so glad we did. Some of the roads we traveled down really were only passable in a 4x4 SUV, and at one point we came upon a couple who had got stuck in rather a deep puddle of mud in the middle of nowhere. Had we had a rope or even a piece of string we would have had a go at helping, but since we didn’t, all we could do was check that they had phoned for help – and we then had the evil pleasure of effortlessly driving through the morass.

You are probably aware that the USA is a big place, but you don’t get the full impact of it until you try to cross it by car. We did 3,500 miles in 3 ½ weeks, going from the air conditioned madness of Las Vegas through the baking heat of the Arizona desert and the Grand Canyon to the snow-capped peaks of Yellowstone. I know this may sound like some kind of tourist advert, but it was just amazing. The high spot of the trip was Yellowstone, where we saw elk, bison and black bears, lost each other in the steam of hot springs and marveled at the geysers.

On the PD perspective I did rather well. In the mornings my walking tends to be a bit unsteady, and ditto around the time when my next dose is due, so to a passer-by on the street I probably look as is I’m ever so slightly drunk. Which I don’t mind if it just so happens that I am indeed ever so slightly drunk, but it’s kind of embarrassing on a sober Tuesday at 11 o’clock in the morning. However, I have now solved that problem by buying a walking stick. The difference it made was amazing: people held doors open for me, made space for me on the street, were helpful in shops, etc. I’ve brought the stick back home with me and I’m trying to remember to use it whenever I go out.

In other news, our offer for the house in Denmark has been made and accepted! We won’t exchange keys until November, so there is a strange anti-climax of not much happening at the moment. But I’m looking forward to the move and to getting the place done up just the way I want it. And it’s good to know that we are moving from the time bomb of living across three floors to a much more practical bungalow with wide doors and corridors and no door steps to hamper a shuffling Parkinsonian.

Put out to grass

JON: Although nothing has yet actually happened and no decisions have been made, we feel that we are making some progress on our house move. It’s a bit like the TV programme Escape to the Country: where we live now could be described as a large(ish) house in a faintly rural setting. The new house is bigger and is best described as being in the middle of nowhere at all. So rather than downsizing as most people do at this stage of their lives, we are out-sizing: bigger house, bigger distances, and (for me, at least) bigger trousers.

All this is very exciting right now, but at some point when the move is done and the excitement dies down, I’m going to have to find something to do with my time. I’m considering taking up fishing. It’s a “sport” where you can sit down and gaze into space whilst giving the impression that you are actually doing something. I have a pile of three books on fishing due to arrive from Amazon so I’ll soon be an expert fisherman (fisher person?).

I’m also told that the lawn in the new house will be my responsibility. The good part is that I’ll be using a ride-on mower which I’m sure will be fun for the first few mows. The bad part is that I have the attention span of a concussed gnat, and there is a lot of grass which will need weekly attention.

One excellent feature of the house is a large window looking out over a few fields to the sea beyond, bordered by small islands and full of little pleasure boats. I have decided to treat myself to a telescope as a housewarming present, and have already discovered that a decent one is not as expensive as I thought. Which is just as well since it appears ever more likely that we will buy the new house before we have sold the old one, so money might be tight for a bit. Just as well I am a man of simple tastes…

A place to call home

MARIE: We’ve just been to inspect a possible new home for the second time (on a lightening quick trip, so don’t nobody get upset that we didn’t pop round). On the surface of it, this house may not look terribly exciting – a 1960s bungalow surrounded by older and more characterful homes, with two good-sized reception rooms but some rather small bedrooms, a bathroom about which the less said the better, and a very 70s sauna-cum-double shower arrangement in the basement.

But it answers (almost) all our very specific and unusual requirements. We are trying to be future proof here, that is trying to find a home that suits us now, and that will continue to suit us if/when Jon gets worse – and a home in which it is possible to have a pleasant life even if quite house-bound. That rules out the vast majority of houses, and when you then add my mad idea that I must have an oversized garden in which to grow raspberries and eggs, the selection really narrows down.

These are our requirements:

- Preferably a bungalow as stairs may soon become difficult for Jon (and if not a bungalow, then a house with a bedroom and full bathroom on the ground floor).

- Ideally as much as five bedrooms as Jon and I can no longer share due to his REM sleep disorder, and we each would like a smaller bedroom to use as a study as he now only works at home and I will increasingly have to do the same. Plus we would like a guest room as we will be living quite far from family.

- A large kitchen where Jon will not get “stuck” in the corners, and which can be adapted for drawers instead of cupboards (as bending down is getting difficult).

- A bathroom with a large shower cubicle big enough for Jon plus stool or Jon plus helper. Importantly, there must be no high edge to get into the cubicle. Also, ideally room to fit a urinal as Jon’s aim is deteriorating.

- A heating system that requires minimum input (many properties we have seen have had pellet burners which are economical and verging on sustainable, but which require regular topping up from heavy bags of wood pellets).

- Location not too far from the nearest neighbour to avoid isolation – e.g. if I am away and Jon needs urgent help. Ideally also with some kind of shop in walking or triking distance.

- A good condition that does not require much in the way of DIY which is now mostly beyond Jon and which was never in my reach in the first place. This means we are wary of older properties.

- Because of our limited future income from benefits, ideally something we can afford to buy without a mortgage and that does not cost a fortune to insure, heat or pay tax on.

- And then we want a very large garden, good outbuildings, easy access to the capital which holds most of our local social life and the national PD centre of excellence, and no road noise.

This somewhat uninspiring 60s bungalow seems to tick all these many boxes, plus has fantastic views of the sea and nearby islands (as you can see). We liked it when we first saw it under a blanket of snow, and now that we have seen it with the garden and surroundings revealed, we like it very much. There is still a structural report to be obtained, estimates on a new bathroom to be collected, the price to be negotiated, and the small matter of selling our current house. But I wouldn’t be at all surprised if this is where we end up.

Am I me, and is that good?

JON: I’ve been looking back over my previous blogs, many of which are basically just diary entries – “last week we went to the zoo” kind of thing – but a couple of things stick out like sore thumbs. When we started blogging we promised to be strictly honest and I’m surprised to see just how honest we have been. Sure, there has been some editing and there is very little mention of our sex lives (or should that be sex life?) – not that there is much to tell, really, since the goat escaped.

Marie talks a lot about how I have changed, and how she initially raged (against the dying of the light) while I just grieved quietly. But have I really changed? While I am still me, am I the me that I was two or three years ago? I think not. I’ve asked friends if they have noticed any changes, and they all say no, though I suspect they are just being kind.

For instance, before I had PD I made lots of off-the-wall jokes. I might ask, apropos of nothing at all, “do you realize that 50% of doctors perform below average?”, or I might pretend to misidentify one of the stars in a film and say that “I’ve always liked Buster Keaton” when the actor is in fact Brad Pit. OK, perhaps these are not examples of stunning wit, but with a following wind they would raise the occasional smile. But this seems to have changed of late, now people look at me (more) strangely and I can almost hear the cogs whirling in their brains, wondering if that was a joke, or my brain failing.

It might partly be due to the change in status. Pre-PD I was the “serious(ish)” scientist with three degrees, a white coat and 100+ publications. Now, I’m that odd bloke who makes even odder comments, the one who sits in the corner and twitches. We have a friend who says “vroom, vroom” whenever he gets in a car – is he demented or just making a very poor joke? In his case the smart money is on dementia, but you get the point?

Another minor problem is that I seem to make weird statements. I start to say something, but then get ahead of myself and leave some of the connective words out. So instead of saying “look at the fat bloke on the TV”, I’ll just say “look the fat TV”, which makes sense to me but not to anyone else. (Of course, I’ve always been used to people not understanding me – I doubt I ever managed to explain my interest in the biomechanics of the temporo-mandibular joint (TMJ) to anyone – but this new incomprehension is more troublesome.)

Along with not finding words when I need them, I also switch words around and end up talking nonsense. For example this morning I was looking at the cat so asked Marie “can you put the cat on” when actually I wanted her to put the radio on.

And I am still having problems with short term memory which I suppose I must accept is unlikely to get much better. I forget appointments, forget when it’s my turn to cook dinner, forget to do things I promised (and meant) to do, ask a question and almost immediately forget the answer. It is really very annoying, for me and for those around me. And it is of course also hugely worrying because I can’t know whether this is more or less a stable situation or the beginning of a slippery slope.

So I get paranoid. A concrete example is our attempts to teach me to speak Danish. We had got into a routine where we did half an hour a day after dinner. Then some months ago the book was tidied away into Maries office and only reappeared when I recently asked about its whereabouts, but we have a yet to do anything with it. (OK, this is just as much my fault as it is Marie’s – but I have the excuse of being a Parkinsonian with auto-motivation issues.) Is dropping the lessons just an oversight, or is that we are both terrified that they will bring my memory issues to the fore?

(MARIE: I was horrified to read the above! I had really, honestly just tidied the book away when we were preparing for the first house viewings, and then forgot about it in the middle of much busy-ness. I had no idea that Jon was fretting that I might have hidden the book because I thought he was beyond learning anything new. And he never said a word, just sat there quietly nursing his fear. What would we do without the honesty of this blog?)

I manage to cope without speaking Dutch, but this is mainly because the average Dutch person speaks fluent English so there is very little incentive to learn (and Marie has learnt sufficient Dutch to cope with most situations). But if Plan A comes to fruition and we move to Denmark, I’m going to need to be able to at least understand some Danish (they are not quite so internationally minded there as in Holland). So far all I can really do is ask for a cup of tea – and I don’t even much like tea. But we’ve decided to restart the daily Danish lessons as of today so hopefully the Danish world of beverages will soon be at my feet. Now, if I could only remember what they call their beer …

Alone but not lonely

JON: For reasons I don’t fully understand, Marie headed off to Denmark for a week or so. She muttered something about seeing clients, house hunting, sorting out a broken tooth and other non-important stuff. She took the car, which was a bad thing, but she also left me with a full fridge and careful instructions on how to use the washing machine, freezer, cat, etc.

So how did I cope, I hear you ask? Not too badly, I hear myself answer. I cooked, cleaned, and did a surprising amount of exercise. (Honest, I really did!) As to the cooking, it may not have been the healthiest diet but it tasted really, really good and I’m prepared to believe that a little of what you fancy does you good. And in my defense, I only had the one packet of chocolate digestives.

I have to admit that house cleaning is not my strong suit, but I cleaned the kitchen sink (minutes) before Marie came home, wiped up a spectacular display of cat vomit, and stacked all my papers into a single pile and hid them in my room. Most days I went for a walk in the woods and when it was raining I used the static bicycle (for about 1 hour a day, which is pretty heroic by my standards).

So on balance how did I cope with my enforced isolation? What did I achieve? Was I lonely? On the achievement front I think I can safely say that I managed to do virtually nothing, didn’t finish my new Terry Pratchett book, did very little sketching. Marie recently bought the full sets of Star Trek Next Generation, Voyager and DS9 on DVD (several hundred hours of viewing pleasure) but I resisted the temptation and will watch them one or two episodes at a time with Marie. Star Trek seems to me to be like drinking, fine if you do it in company, not so fine if you indulge alone.

Was I lonely? Well, no. I thought I might be, but writing the occasional e-mail, chatting with Marie on the phone most days and with a few others too in the course of the week fulfilled my needs for social interactions. Did I miss Marie? I have to admit that I did – and not only because she’ll be reading this, but also because the laundry needs doing (joke, honest!).

These 10 days I’ve spent alone have also provided a dry run for our planned move to Denmark, and very rural Denmark at that. Can I get all (okay, most) of my socializing done via the web? Yes, it seems I can. Would I be able to cope if something unexpected happened? Yes, it seems I would. Getting in and out of bed unaided is becoming difficult, but now that I have my grab pole I manage. Putting on socks and shoes may soon be beyond me, but my Crocs solve that little problem. All will be well.

In the dim and distant past when both brain and body were functioning normally – okay, normalish, if you insist – I would not have coped well with 10 days on my own. To fund my Ph.D. I did several locum jobs as a dentist, and in the evenings I would find a pub and usually strike up a conversation with the locals. Even if I did not manage a chat, I’d still have a pint and drink in the atmosphere (better that than breathing in the drink). If asked, I’d have claimed that anything is better than staying in a hotel room. But that was then. Now, a hotel room with room service, a big bath, air-con and a 100-channel satellite TV seems like bliss. As I’ve grown older I’ve come to like my own company more and more. I wonder if this is just a natural effect of ageing, is it the dreaded Parkinson’s, or am I perhaps simply a miserable old git at heart?

(PS: Do you really think I would take a photo of my bottom? Impossible, with my rigidity. Honestly, it's just a close-up of my thumb and index finger.)

De-cluttering mind and home

As Iaid in a previous blog I’m finding it harder and harder to think of things to write about on this blog. Not only on the blog, in fact, but also in the book Oh yes, The Book (on food science) that I am supposed to be writing with two old colleagues is turning into something of a chore. My shrink told me that I should not be surprised, that I should expect to find things like deep concentration and multi-tasking difficult. Although at the moment I can still chew gum and walk at the same time, there may well come a time …

My contribution to the book is supposed to be three chapters. I’ve more or less written one, though it’s not very exciting but does at least have a beginning, a middle and an end, and some parts which are of interest. But I wrote this more than six months ago, when I think my thinking was better. Since then, I’ve put a fair amount of time into working on the other two chapters. They now contain lots of words, but all very disjointed, and the more I try to fix the text the worse it seems to get. This, I’m told, is a symptom of my Parkinsonian inability to mentally multi-task and hold more than one idea in my working memory.

I’m hoping that recognizing the problem may be part of the way to fixing it. The shrink suggests that I should attack the writing in small chunks and at times when I’m the very most functional. This is clearly a good idea – in fact, it is painfully obvious, so why (the hell) have I not been able to work it out for myself? I still only recognize the wisdom when I’m ‘on’. When I’m ‘off’, I can sit at the keyboard for hours without achieving anything, and without recognizing that I am ‘off’ because … I’m ‘off’.

I’ve been trying to get into a routine of writing again, but this time I’m going to try generating small chunks of text by writing a paragraph or two on a well-defined subtopic and then passing the bits on to my co-authors who I hope will be able to slot the text into an appropriate position and provide any linking text that may be needed. Who knows, it might just work. And we have eight more months to do the job which might just be long enough to generate a manuscript.

Oh, and did I mention that we have put the house up for sale? There has been a mad rush of potential buyers coming to look round the house – TWO of them in three weeks. Marie has decided the house looked to cluttered, so she has rented a 5 cubic meter self-storage container into which many belongings are now disappearing. For example, we had some storage boxes under the bed – yup, they’ve now gone into storage. Who looks under the bed when viewing a house? I’ve decided to be politic and not mention it.

I fear that for the foreseeable future we will be living in a state of splendid isolation and increasing obsessive-compulsive behaviours. No-one other than potential buyers will be allowed into the house, all crumbs and spillages will be cleaned up on sight, pillows fluffed the moment one has got up off the couch – in other words, a living death. At least I have put my foot firmly down on the issue of my study, which remains a haven for all the messes exiled from other parts of the house. I suppose it’s nice to have something other than my Parkinson’s to complain about for a change …

Home, sweet home

We’ve just come back from a trip to Denmark. I had to put in a few days of work and meetings, and Jon came along so we could also look at houses. The plan, as you may already know, is eventually to move to Denmark, and these are early steps towards that goal.

The thing is that Jon has been off sick from work since August last year. During that period he has seen his works doctor about every six weeks, and each time the guy has been of the opinion that Jon is incapable of working in a normal way (or, in the local legalese, that Jon is 0% fit for work). Unfortunately, we find this hard to disagree with. While Jon can still do various things related to his old job – review papers, consult on experimental design, perhaps write up old results – he does this at a speed that is unacceptable in the workplace, with multiple breaks when some body part or other plays up. There are also jobs he cannot do at all any more, such as building testing machinery, engaging in public speaking, and meeting deadlines. Obviously, there is a limit to how long Jon’s employer is going to want to keep paying for this.

So what we think will happen is that sometime during the next year, Jon will be assessed for a disability pension, and going by what both the works doctor and the neurologist tell us, the upshot of it will be the end of Jon’s formal work life. This is a bitter pill to swallow, not least for a man who has for as long as I have known him identified himself entirely with his work and who has always claimed he would go on until they barred the doors against him. Well, as it turns out it’s not ‘they’ who are barring the doors, but Parkinson’s.

If it were me, I’d be furious and despondent and quite impossible to live with. Happily, Jon is taking it rather better, and is pretty resigned to the life changing decisions that loom. And we are trying to make this not just a loss, but also a trigger for a new start and positive changes.

Rather than fret over the loss of salary that our budget will soon have to absorb, and worry about how long Jon will be able to manage the stairs in our house (seeing that he has already had one period where that was a big issue), and rather than continue on in Holland where we do not speak the native language of the health professionals, we are going to take this bastard of a situation by the balls and plan to move to my native country of Denmark if and when Jon’s work situation gets settled.

So we’re thinking about putting our house up for sale now in the expectation that it will probably sit on the market for a ponderously long while before selling. And we’ve started looking for a base in Demark in the expectation that with our very specific wishes it may take equally long for us to find the right place. It would be great if everything could come together in some perfect ballet of timing, but otherwise we’ll just have to rent a place to tide us over.

What kind of house do we want, then, and what kind of house does Parkinson’s want?

• A bungalow, obviously, since stairs are just out of the question.
• Preferably wide doorways and no doorsteps between rooms so that the place is zimmerframe (rollator) friendly.
• Outdoor steps arranged so that ramps or similar can easily be fitted.
• A bathroom large enough for a helper, and with a bathtub to soothe Jon’s aching muscles when needed (far from a given as most Danes prefer to shower).
• Two good bedrooms as we can no longer share because of Jon’s increasing twitching and jerking (and snoring), plus an extra bedroom for when the kids visit from abroad.
• Broadband access so that we can work from home – Jon permanently and me occasionally at first and perhaps permanently later if Jon comes to need a constant presence in the house.
• Since we’re looking at rural places – both because of our budget and because I want enough land to grow apples and eggs – the heating system becomes an issue as many houses have boilers that require very regular attention which could soon be beyond Jon.
• A place in good repair as any sizeable DIY project is entirely beyond us, for reasons of physical and practical ability and because we have never enjoyed that sort of thing in the first place (indeed have in happier times sailed close to divorce over the fitting of curtain rails and the like).
• Reasonably easy access to the house itself so that there is no risk of rain or snow cutting us off from medical or practical help.
• Within no more than an hour’s commute from the main Parkinson’s centre in Denmark (which happily lies in Copenhagen where most of my family and our friends live).
• Preferably a winner in the postcode lottery of municipal services for the lesser-abled, such as home help and free physiotherapy.

And on top of these disease-ridden requirements come the normal issues that are part of anybody’s moving plans, like price and size and neighbourhood and taste etc.

So it makes sense to start looking already even though we may not be ready to actually move for another year or two – and it’s also quite good fun, planning for a new future and a new level of comfort (and having a good laugh at other people’s taste in wallpaper). We have moved about a lot in the years we have been together and have, I think, become rather good at it, so this is a bit like taking up an old pet project and dusting off our skills. I’m sure there will be a point when it all just becomes stressful and hard work, but for now it is a pleasant and hopeful way to spend a few spring days.