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.

Doing my scales

It’s been a while since I last posted, and in fact I am beginning to wonder if this blog is a good idea. It makes me somehow very self-centered and probably bores the pants off my readers (assuming that I have any – I’ve not dared to add a hit counter yet). These navel-gazing questions of how I (we) have been, are there any new symptoms, have I adjusted my medication / seen a doctor / had an insight – do I even want to think about it? There is such a thing as healthy denial, you know.

One day at a time, as they say, and on a day-to-day basis there are no changes, or the changes are too small to detect, i.e. falling below the threshold of the ‘just noticeable difference’. I wonder what the SI unit for that is? Marie suggests the St Peter after the statue of same in the Church of St Peter in Rome. Apparently, the devout all kiss or stroke one foot of this statue, and while of course you see no difference from day to day, if you take a perspective of years or decades the foot is clearly eroded by belief – to the point where Peter is now, as far as she knows, on his third extremity. For Parkinson’s, the St Peter could be based on twitches per day, or time to put socks on, or perhaps likelihood of getting to the phone before the answering machine kicks in.

This new unit seems to me an improvement over the current tool used by neurologists, the Hoen and Yahr scale which is just a five point scale for impairments physical, mental, occupational, social, etc. Here, a score of one equals very mild symptoms (a slight tremor, a little slowness) while a score of five denotes conditions you really don’t want to think about too much, involving wheelchairs, enemas and cognitive meltdown.

Talking of which: we played chess, I won a couple of games but I also managed to lose some by such ploys as taking my own pawns when I forgot whether I was black or white. Was this a symptom of ageing, fatigue, alcohol or the beginnings of something nastier? Who knows. Likewise, I got persuaded to contribute to the radio programme about my dad that I mentioned in an earlier blog. I gave a short interview about my work over the phone and to be honest I think I made a total balls of it, sprouting nonsense and non-sequiteurs all over the place. The interviewer claims he can edit it into something reasonable, and I say good luck to him.

As far as I am aware, there are no accurate tests, no machine to tell you that you are exactly 3.23 on the Parkinson’s scale and deteriorating by 0.14 per year. And if there were, would I want to use such a machine, or is (some) ignorance really bliss? It’s a slow and insidious process, and given that there is no cure and that treatment only gets less effective over time, what is the value of knowing?

Perhaps I would rather live as our cat who was born with a degenerative, incurable kidney disease and by now has hardly any normal kidney tissue or life expectancy left. But the cat doesn’t know that, and the disease has progressed slowly enough for him to adjust to the effects at every stage and continue to live an almost entirely normal cat life of playing, snoozing, looking cute and ruthlessly killing small furry animals. This seems to me a pretty ideal way of being terminally ill.

So I’m opting for a denial strategy. I’m fine if anyone asks, and if they really, really probe I think I’ll continue to claim that I’m fine, although I may add an ‘–ish’ to indicate this is rather less than the full story. For a while, then, I will leave this blog to Marie who claims to be bursting with things to write about. My ears are burning already...

A day in the life

Marie was saying last week how I don’t perhaps get as much out of my time as I could, and in the right mood I can be persuaded to agree that this may contain a grain of truth. So let’s have a look at my day and see what time and energy Parkinson’s leaves me for doing things I want to do (or that she wants me to want to do).

3 am. Well, a typical day now starts rather early with me waking up around 3 am. Sometimes I fall asleep again unaided, but usually I have to give in and take a sleeping pill or I would remain awake, fully awake which is not a whole heap of fun in the middle of the night. With the pill, though, I wake again at 7 am – but the price is that I stay drowsy until mid-morning.

7 am. On waking up I take my Sinemet (L-dopa) pills and wait for them to take effect, which anything from 30 to 60 min for the stiffness to ease. I still have some twitching throughout the day, but the L-dopa reduces it some, and I guess I am also just getting used to it. So that at least is a good thing. I also take a high dose of Q10 as we have read somewhere that this may have a slight delaying effect on the progress of the disease. I don’t generally believe in alternative medicine, but hope can make you willfully gullible.

8 am. My breakfast is Wheatabix, not by choice but because the bowels also suffer from Parkinson’s and I now tend towards constipation. Such fun. Anyway, I cheat the health brigade by having lots of sugar on it.

8:30 am. And then for the challenge of the shower and of getting dressed. Actually, the shower itself is okay, and the L-dopa has given me back the pleasure of a wet shave, but it is getting more difficult to dry myself off now because I am too stiff to reach round my back or lift up my legs high enough. For the same reason, I find underpants/ trousers / socks tricky, while t-shirts are still okay, as are shirts so long as they come ready-buttoned. A sweater over a shirt is almost impossible without help, though – if I try on my own, I invariably end up looking like Quasimodo’s uglier cousin. All in all, the whole process, which used to be over in 15 minutes or less, now takes upwards of an hour, and I need a little rest at the end of it.

9:30 am. Twice a week I go for a physiotherapy session in the morning which involves a ten minute drive each way, plus a ten-minute struggle at each end to get into or out of the car. If I need to see my GP I can walk to his surgery, while my other less regular health appointments – neurologist, psychologist, works doctor etc. – are all so far away that Marie always comes with me as driver. Most weeks there is at least one such ‘extra’ appointment.

And otherwise I spend my time reading – both the newspaper, books (usually non-fiction and often work-related), and articles (always work-stuff) – checking e-mail pretty regularly, trying to work on writing this book we keep talking about, editing my collection of photos, searching and surfing the net.

Noon. I take the next batch of L-dopa at noon (if I forget, my trembling starts to get noticeable again pretty quickly).

I don’t eat an organized lunch, so day-time food is mainly grazing on bread and fruit and that sort of thing. In the afternoon I do much the same as in the morning. A couple of times a week I also find a reason to walk down to the centre of our village where the shops and post office and health centre are. And in between these things I probably watch 1-2 hours of TV in little bits of ten minutes here and 15 minutes there.

3 pm. I usually take a half-hour nap (or fall asleep where I sit) mid-afternoon, followed by more of the same as above. I must admit, though, that even though on paper it looks like I spend a lot of time reading and writing, at the end of the day I have disappointingly little to show for it. I always enjoyed finding things out more than I enjoyed writing about what I had found out, but as things stand now I don’t have access to a lab so am kind of forced by circumstances to spend more time than I would prefer on that part of my job that I enjoy the least.

5 pm. I take my last portion of L-dopa at 5 pm. After that I am frankly tired out, whether from having done stuff or, to be honest, from having struggled and not done stuff, so the rest of the time until dinner I spend mainly on staring vacantly at the telly. Twice a week I cook dinner, and although the meals I produce are usually fairly simple, it takes me a while. I enjoy it a lot, though, both the cooking and the eating.

7 pm is our normal dinnertime. Afterwards I wash up. Recently, I have also started to spend 15-20 minutes every day trying to learn my strange wife’s strange native tongue with a self-study book and her there to practice on. We have had several false starts at this, but I think this idea of a short time every day will work – it’s enough to feel that actual progress is being made, yet not so much that it becomes a dull chore.

8 pm. Afterwards, I might watch some more telly, or go and check e-mail again, or read a bit more. Because my sleep is not perfect (though far, far better than it has been), I get tired pretty early in the evening and regularly drop off. But I aim to stay up until at least 10 pm when I’m beginning to twitch again.

10 pm. I usually go to bed around 10 pm, so that is when I take my first sleeping tablets. I have experimented with taking more pills early at night to avoid the 3am pill and thus avoid the morning drowsiness, but that does not seem to work.

So, is this the active and rewarding life Marie would like me to have? Certainly not. Is it the productive yet leisurely life I hope for? Not really that either, there’s too much frustration at the lack of progress for that. How can it be improved? Answers on the back of a postcard, please! If I don’t get myself sorted out soon, I fear Marie may well have another go at ‘organizing’ me, and that is best avoided for both our sakes …

Mea culpa

Writing a blog has an element of the confessional about it: “forgive me, for I have sinned (against my own unwritten rules of blogging frequency)”. While it may not warrant 200 Hail Maries and a spot of flagellation, the guilt trip is certainly there – and more interestingly (to me, anyway), I find that I have missed my weekly session of catching up and reviewing the events of the past seven or so days. So, it is two weeks since my last confession ... and some stuff has happened.

My last blog was pretty downcast, really, as I was frankly scared out of my meagre wits that I was on the not-so-slow road to dementia. Now, though, although life is by no means back to normal (and what is “normal” anyway with a progressive disease?), it has I think been proven that most – perhaps all – my cognitive problems stem from side effects and combined effects of my drugs. I’ve talked to my neurologist twice when she has adjusted various medications to see what effect that would have on my mental state, and joy of joys: my brain is starting to work again. The relief!!

The trouble is, of course, that while my medication may be doing me some harm, I also cannot live without it, so I expect I am now in for an extended period of experimentation with drug doses and brands. For now, I’m physically at that exasperating stop/go crossroads between shaking and sticking to the floor, but to be honest I was probably under-medicated for the shakes before, so the difference is not that huge. I also still can’t sleep more than a few hours each night – BUT the mental change on reduced drug levels is just wonderful. Ask me what 4 times 4 is and I will confidently tell you 16 – and did you know that 16 times 2 is 32 – and 32 times 2 is ...mmm... 43? I clearly still have some work to do, but it is grand to know that there is light at the end of the tunnel, and the faint whiff of hope in the wind.

It also helps to talk. That is partly what writing this blog does for me, but it is also really good when we have an opportunity to sit down with others in the know and have a good moan. We know a number of people who are in a similar, but not identical, position to us. There is multiple schlerosis (MS), a bad case of rheumatoid arthritis, an unusual combination of degenerative spinal problems, and a case of un-diagnosable severe malaise among our nearest friends and family. These are all progressive diseases, and all can of course be miserable at times, and bloody miserable at other times. Many of the issues, concerns, fears and coping strategies are similar, so it is good to share our war stories, collect helpful thoughts and advice (we’re still too new at this game to dispense advice), and just occasionally have a full-blown moan – all stuff that would probably bore the pants of anyone else, but which becomes fascinating when it applies to YOU.

On a more amusing note, I’ve become stuck in toilets not once but on four separate occasions this week. The problem stems from being in Denmark (family visit and Marie's work), where people seem to be smaller (well, at least narrower) than me. I can get into the loo no problem, but then on attempting to leave I find myself with frozen muscles, stuck staring at a blank wall and unable in the tight space to turn round towards the door. With some considerable effort I have managed each time to force my growing bulk round and out, but will I always be able to? In fact, when I went during a ferry trip, Marie who was waiting with increasing apprehension outside the men’s room ended up sending in some hapless tourist to check for “a guy in a black T-shirt who might need help”. Fortunately half the men in there were wearing black shirts, so I narrowly escaped embarrassment. I know she means well, but honestly! On the trip back in a few days’ time I plan to stick strictly to a dry diet of peanuts and saltines.

Frustrations

Another week spent all on my own while Marie earns her keep selling books at a conference somewhere. It has its downsides, and its upsides, but apparently it has no side sides.

So how did I cope? Well, we actually both rather enjoy it when the other goes away for a few days and we get to indulge our various foibles and anti-social tendencies in peace. Thus, with my quiet-loving wife away, I got to keep the radio on at all times, and loud. Likewise, the entire place was one glorious mess with that seriously lived-in feeling I (and the fruit flies) like so much, until about one hectic half-hour before Mrs Neatfreak was about to turn up again. This time, I also got to nap when and where and as often as I wanted.

But perhaps most significantly I went into work on Monday morning on the first day back after my four-week holiday at home. I might as well have stayed home for all the use I was in my insomnia-addled state. As it turns out, I must have looked exactly like I felt, because taking one look at me my boss suggested (and I agreed) that I’d be better off going straight home again on sick leave. OK, I have been unable to function properly for several weeks now, but that was on my own time. But now it’s official, and although this is neither the best job nor the best employers I have ever had, the very real possibility that I may never be able to work again looms rather large. Being officially sick somehow feels much worse than just being sick – it’s got that whiff of the scrap heap about it.

As it is, I am in such a state that I can’t even pretend to ‘keep my hand in' by reading the latest papers, staying in touch with close colleagues, putting in the odd appearance. I had quite a few plans for what I wanted to do last week without Marie here to distract me with fripperies like mealtimes and fresh air. I had great plans to make progress on this book I am supposed to be writing with two good former colleagues, aiming to finish one chapter at the minimum. I was also going to look into a bit of Java script for a website I am building. And I had a good book waiting for me, and I was going to call my kids, etc etc etc. As it turned out, I failed on all counts and got very close to zero – zilch – nada done on any of these plans. Did I feel bad about this? You bet I did. Sure, I am still sleeping badly (see earlier posts), but I didn’t feel so sick that I could expect to achieve nothing at all. A big disappointment, and perhaps the beginning of some kind of learning curve involving the adjustment of expectations so that I can set myself an achievable goal and get to feel good about accomplishing something, rather than asking too much of myself and failing miserably and depressingly.

From everything I've read so far, I'm supposed to be in a kind of honeymoon period with drugs working at peak efficiency and all things running smoothly. When I got the diagnosis of Parkinson’s, I thought ‘okay, I'll take my pills and that will be that for years and years. I'll drive – work – run marathons – be normal.’ Instead, I'm a complete wreck. Where am I going wrong? On general health, I’m better than ever: I’ve quit smoking, hardly drink at all, take gentle exercise almost daily, but that appears to make little or no difference.

My huge worry is that I have been misdiagnosed and that I have in fact got one of the ‘Parkinson’s Plus’ conditions (a fear not helped by me recently reading Life in the Balance by Thomas Graboys, an admirably honest autobiography about Parkinson’s with Lewy body disease which causes dementia). Honestly, I’m crawling up the walls with anxiety. On the other hand, it is also entirely possible that all my present troubles stem from not sleeping – but I’m still stuck up here near the ceiling waiting for a prescription for new sleeping drugs. No matter what, PD is a progressive disease, so I can predict with some considerable degree of confidence that next year will be worse than this year. Ho hum. I wonder what other little jokes the universe has in store for me ….

Fun with pills

Last week I visited my neurologist – who looks like she’s 17, but that’s probably just because I’m an old fart. I complained that my Parkinson’s disease has progressed a bit so I now have ‘sticky’ hands and feet (and have accused my poor wife of coating the floors in treacle), so she upped my dosage of Sifrol to 16 pills per day – from three lots of four to four lots of four pills. Plus I’m taking up to six pain pills per day as three lots of two. It’s almost impossible to keep track of what to take when – I’ve set the alarms on my mobile phone, but as the phone sits either at home in the charger (which, handily, is two floors away from my study) or at work in my jacket pocket (i.e. slung over a chair in a different room), either no one hears it OR it goes off directly in my ear – and bloody loud that can be. Marie keeps trudging up the stairs with the phone for me to sort out (because it might have been a call) which tends to annoy both of us.

We are both going a bit crazy with lack of sleep. We’ve got separate bedrooms now or neither of us would ever sleep at all, but with the doors open so we can still wake each other up when getting up for a wee, or to let the cat in and out (and in and out and in and out), or when my insomnia wins and I switch on night-time radio. On top, I’m going a bit mad with the back pain (again!) and, if I’m honest, with life. So what am I doing to fight the PD? Nothing much, just having a therapeutic moan – it’s a carbon-neutral thing to do.

Slightly less good for the old carbon footprint is living in a different country from my children and grandchildren. We’re off to the UK next week to see them, and to get one of my teeth fixed (we have a serious down on the local dentist, so we try to go when abroad). I’m almost certain that more than one visit is needed, which will give me another excuse to see the offspring. Although we’re only staying for one night this visit, we have booked our luggage in as hold baggage to make life easier, and are paying extra for the priviledge (cash-rich, health-poor). So a trip to the supermarket is in order to fill up the bag for the return journey. We’ll stock up on the necessities of expat life: crumpets, pork pie, bacon, bisto and marmite (the marmite is there mainly to annoy Marie who thinks its is disgusting, but I like it). We’re taking the kids a book from our by now extensive library about PD – hopefully it will do more good than harm.