Micro planning

MARIE: I’m away, and it’s great. Away as in on holiday, all on my ownsome, with no responsibility for anyone or anything. Just me and the cats and a pile of books and some gorgeous walks right outside my door for a whole, brilliant week. I picked this place based largely on a user evaluation that declared it a beautiful area and a well-appointed holiday flat, only too bad that the area was kind of boring with no people. YES, I thought, that’s precisely what I want and need.

 

An important bonus is that while I am off communing with nature and literature, Jon is well cared for and feeling quite content. It took some doing, though. I will admit to being a bit of a control freak, but preparations for this trip really tested my skills at micro planning and micro management.

 

Our care liaison at the local authority came round for a long meeting to determine Jon’s needs and to what extent they would be able to meet them. Quite a large extent, I am happy to say. He gets visits at 6 am to fit the duodopa pump, at 8 am to help with showering and dressing and breakfast, at 4 pm as a general check-up (which probably isn’t necessary), at 6 pm to serve dinner, and at 10 pm to disconnect the pump.

 

We had a steady stream of nurses and nursing assistants through the door the last few weeks before I left so that they could all learn how to work the pump, where things are kept, and what must under no circumstances be forgotten. I left them with prepacked drug doses, an appropriate number of home-cooked ready meals in the freezer, and numerous lists of phone numbers and appointments and key points and whatnot – some because I felt it was necessary, others because they asked me.

 

In the middle of all these preparations, it became clear that I was failing to teach Jon how to look after the cats, so further arrangements had to be made for people to come in and care for them during the first few days of my break, until I could make it back to collect the kitties.

 

By the time I finally got here, I so needed a break.

 

We parted on less than happy terms, I’m sorry to say. I needed to do a quick supermarket run before stuffing the cats in the car and setting off, so offered Jon a lift if he too wanted to get some groceries. He accepted, but turned out to want the electronics store rather than the supermarket. In fact, he thought I could just drop him there and he’d take the bus home. Now, 9 times out of 10, that would work fine, but what if this was that dreaded tenth time? What if I got a call half-way across the country to tell me that Jon had fallen down in the street, or got on the wrong bus, or lost his way, or gone OFF and been unable to move – all things that have happened in the past. So I wouldn’t let him take the bus. That pissed him off. So I took him to the electronics store and waited while he did his shopping. That pissed me off. And when it came time for me to leave, he was still too pissed off to say a single pleasant thing to me, even though I begged him repeatedly. Oh well, at least one of us soon forgot that. I really need to stop minding so much and just accept that he can’t help it.

 

I’ve talked to Jon several times since I left and have been relieved to hear that he is well and that the week has brought few challenges. He’d be happy to do this again, and so would I. I hope the nurses agree.

Companionship

MARIE: We’ve been immensely remiss and haven’t blogged for an age. I’ve been busy in the garden, preparing to receive a family of bees and growing my rhubarb to such a size that you must admit the leaves make my bum look positively tiny. Jon’s been busy with computer matters and still is. He’s such a nerd and claims to actively enjoy the hours and days it can take to fix a bug or get a new device functional.

There’s nothing new on the pump front. We’re not surprised but perhaps very slightly disappointed not have an appointment yet. But I guess elective surgeries grind to a halt during the summer just as the rest of society. We’ve decided to be patient until the school holidays are over. If we still haven’t heard by then, I’ll have to get on the phone.

Meanwhile, we made an application some weeks ago for an escort service for Jon. Not perhaps quite as exciting as it sounds – I understand a firm hand on the elbow is about as up close and personal as it gets – but an opportunity for Jon to get out and about without having to rely on me.

He wants to spend hours on end in electronics shops. He wants to return over and over to one particular museum to perfect his photo of one particular exhibit. He wants to go in search of the perfect desk chair, and he wants to go fishing, and maybe he wants to attend lectures in bioscience. But he does not want to wait for me to have the time, and he certainly does not want to wait for me to have the inclination. And although I want to help Jon and be available to take him places, I recognize that too often recently my other commitments have gotten in the way of his plans. That’s not right. It made him feel a bit isolated and made me feel a bit guilty.

But then I discovered that our local authority runs this service (which they wisely omit to advertise) where those with permanent disabilities can get a free escort for up to 15 hours per month. We thought it would be brilliant for Jon to have someone who can drive him places and help him find his way round and give him a hand when he gets shaky and help him remember the drugs etc. etc. etc. – basically what Jon calls a thinking-brain dog.

Yesterday was the meeting to decide on our application and to our mid-sized surprise, it was approved almost straight away. Now we’ll have to see if the local authority has a suitable escort on their books. If not, we can find somebody ourselves – perhaps someone a wee bit international from Jon’s old language school.

Government-funded freedom (for both of us) – not bad!

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.)

Name dropping

Jon is in famous company with his Parkinson’s: Muhammad Ali, Pope John Paul II and, most vociferously, Michael J. Fox. (It is pretty poignant that Parkinson’s has all but taken Ali’s very distinctive voice from him, leaving him with an indistinct whisper.) Of course we read Fox’ first book, Lucky Man, where he talked about how he learned he had the disease, how he concealed it for years, how he finally ‘came out’, and how he wound down his acting career and started up his Foundation for funding research into a cure for Parkinson’s. Fox made his name being funny, so of course there was funny writing in there, but also parts that were very moving and that spoke directly to the stage we were at and the fears we were dealing with when we read the book.

Now Fox has just published a second volume of autobiography, Always Looking Up, which we bought as soon as it came out. Jon read it first and found it less engaging than the first book. I’ve just read it over the last few days, and I kind of agree. There is a fair bit of repetition from the first book, and a fair bit of the kind of name dropping and funny-story-telling that one would expect from any celebrity biography but that is of limited interest to us. However, when I decided to skip all pages with too many capital letters (i.e. too many famous names and the places they met), then what remained turned out to be a very decent book about coming to terms with the disease.

In the first book Fox had deep brain surgery on both hemispheres, so in this new book he is right out of treatment options. There are only the pills left, and at the advanced stage of the disease that he has reached, they work very much less than ideally. Basically, what you get after a number of years on L-dopa is what is termed ‘on-off’ periods, which mean periods when the medication is not working at all and periods when it is working well. These periods can alternate abruptly and quite unpredictably. As if that wasn’t enough to contend with, there are also periods when the medication is, in a sense, working far too well – when it doesn’t just stop the debilitating, cramped slowness, but instead accelerates the entire body into a riot of uncontrollable motions known as dyskinesias.

This is still many years away for Jon, indeed he may well never get to the stage Fox is at (normally, the later in life you get the disease, the slower it will develop). So in that sense, the book has less immediate significance for us. But as an example of coping, of counting your blessings instead of listing your troubles, of sheer chutzpah in the face of just about anything life throws at him, Michael J. Fox is amazing. What he does in the way of raising funds for research and keeping stem cell research a live issue in US politics is immensely valuable. His inspirational example, though, is entirely invaluable.

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 ….

Home alone

Here I thought we were getting along rather well, and then Marie ups and leaves me. Okay, it was a work trip and only for a few days, but what’s a bloke to do? Pine, panic or procrastinate? Anyway, she left me with steaks to fry, English goodies to eat, and instructions for all emergencies and eventualities. The goodies are never quite as good as the mind imagines (NEVER let on I said that), but at least they are plentiful, and the cat enjoys sharing them with me.

But bugger it, I miss her. She’s supposed to be here to jolly me along and pester me into doing things, and to rub my aching back and bolster my flagging mood, and to help me tie shoelaces and put on belts and find keys – and also to hug me and hold me. Anyway, I soldier on. Strange pains go unreported (not to be mentioned at work, as who knows if they are still waiting to pounce and push me out), insomnia goes unacknowledged (okay, the cat knows I’m up at 4am, but is supremely unsympathetic), odd sleeping/waking dreams are not retold and laughed at (I hate it when she does that, but miss it when she doesn’t).

I avoid going out over the weekend. I feel I am beginning to twitch, and though I realize this is probably not visible to others, it feels so obvious to me I can’t believe nobody would notice. My speech is also affected, with a dry mouth and rough throat not helping any – I have been given a referral to see a speech therapist, and I realize I should not put it off much longer. I’ll tell you about it when I’ve pulled myself together and been for an appointment.

Anyway, the big question is: has Marie left me with enough food? You would think so, but I have an impressive appetite these days (it must be the pills). I root around and find various hidden treasures – the ginger nuts secreted for some dark and rhubarby purpose, a forgotten scrabble game made of bad chocolate, the microwave popcorn put away as insurance in case of nuclear winter. I could of course pick as much fresh veg as I like in the garden, but I’m a man for whom VEG means ‘Von Ebner’s glands’ (tiny things to do with saliva).

We never used to call each other every day from trips away, but now Marie calls daily and we talk for much longer than we used to when I was well and she would call only once or twice in a week away. Of course, the unspoken issue for both of us is: am I at risk of doing something stupid or dangerous, forgetting to feed the cat or setting fire to the house, or will I go psycho with lack of sleep and hurt myself? Of course not, no way – but as the Parkinson’s progresses, I can feel myself becoming more careful and timid, avoiding what I fear might be risky situations. Since when was I like that? How dare this disease take away my carelessly accident-prone self?