Carpe diem

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

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

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

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

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

 

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

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!

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?

Balancing acts

JON: Bah, Humbug to all my readers, and I wish you all the usual messages of despair and hopelessness that accompany the past season of enforced jollity. There, that’s my annual moan over and done with. Here, we celebrate Isaac Newton's birthday (25 December) with a meal of historically appropriate excess and complexity, and we are now sufficiently fortified to man the barricades for the coming year.

Coming soon will be my assessment by the ‘benefit people’ who will determine my level of disability and thus the size of the pension I will receive. I am of course hoping that they will find me entirely decrepit and of no use whatsoever to the world of work. (This, in my opinion, is not far from the truth, but is something I generally try hard to forget.)

However, at roughly the same time I will also need to be re-assessed as to whether I can safely be let loose with that modern murder weapon, the car. Here, of course, I shall try to impress all round with how marvelously well I function despite my little neurological problem. Quite a balancing act, that (such fun with Parkinson’s). As a first step I get to see a neurologist other than my regular, and then if he feels it necessary I get to take more or less a full driving test. When I took the test two years ago I passed with no problems, so I’m hoping all will be well again this time – and am feeling reasonably confident since last time I was suffering unpleasant side effects (mainly tremors) from the medications I was taking, whereas now my motor symptoms are pretty well controlled.

In fact, I imagine that from a distance you would not actually be able to diagnose me – closer up I shake a bit and have the occasional twitch, but it's much, much better than it was. Marie disagrees and thinks my rigidity would tip off anyone with a glancing knowledge of Parkinson’s, though luckily that should not be much of an issue in relation to driving. Anyway, if I can convince myself this is true then I might be able to convince the neurologist that I don’t need to take the driving test.

In fact I do very little driving, but to lose my license would be a pain, both for me (becoming less independent) and for Marie (becoming my constant driver). I’d be happy enough to be my own passenger as my main deficiency on the roads is that I am over-cautious so drive slowly enough to infuriate other motorists.

I’ll start the year with a plea. I have only just worked out how to add a hit counter to this blog, so I have quite a vague idea of how many and/or who is reading it. If you can spare a moment, add a comment or send me a short e-mail, just so that I know there is someone out there in cyber space.

MARIE: I should like to add a small rant to the above. It is of course entirely reasonable that Jon’s driving skills should be regularly assessed as the disease develops, and quite possibly an evaluation every two years is a sensible interval. It’s a fair bit of bother for us since first one has to go to the town hall to get the application form, then to the GP to get his notes on Jon’s condition, then send in the forms and be told to go see a specialist neurologist, then possible take a fresh driving test and then, at last, order the new license.

This all takes quite a bit of time, but one could argue that as Jon is too ill to work, he is not short of time. However, time is not all it costs. There’s a fee for the form, a fee for the neurologist, a fee for the test and a fee for the license, in total running to rather more than 100 euros – every other year. It strikes me as very unfair that the disabled, who have small incomes and no way to improve on them, and who are more dependent on cars than the fully able who can choose to use bikes or public transport instead, should be made to pay this special mobility tax. We are lucky to be reasonably secure financially, but I can imagine the extra expense can be quite a concern to many disabled drivers.

Awakenings

MARIE: As Jon said, I was away for a good week, and a few days after I came back Jon went off to visit old friends and colleagues in England. He always leaves lots of spoor behind, so it took no great deductive powers to find that he had watched Awakenings again (the film based on the documentary based on the book by Oliver Sacks where he tells the stories of his patients who had an ultra-severe form of Parkinsonism brought on by the late effects of a particular type of encephalitis). It’s a very fine film, as we both thought when we first saw it, independently of each other and many years before Jon had any inkling it would gain a personal relevance. So thus prompted, I watched it too while Jon was away.

There is an element of self-pitying catharsis in it now. Because the film is a tear-jerker about people who have essentially the same symptoms as Jon, though orders of magnitude worse and at a time when effective medication was in its infancy, it is like seeing our little everyday struggles blown up to a scale where the dynamics and mechanics become crystal-clear. And that, of course, means we can see shades of ourselves in the situation and have a good old cry – ostensibly over the film, but really over ourselves. Which is nice, in a slightly twisted sort of way.

Having seen the film, which focuses on one particular patient, Leonard L., I also felt like dipping back into the original book to re-read his case history there. The film character is a simplification and generalization of the case history – and fair enough, film usually both adds to and detracts from the material on which it is based. The real story of Leonard L. is actually far more moving than the film, which presents him and the other patients as completely frozen physically and essentially catatonic before they are administered L-dopa. In reality, Leonard was highly intelligent, a Harvard Ph.D. student before his admission to hospital, and a voracious reader and book reviewer during his decades in hospital – so long as someone was there to do what his prison of body could not: turn the pages for him. Maybe it was simply one step too far to expect mass cinema audiences to enjoy a film about a man trapped alive in an immovable body? Better and easier to pretend that he was unaware.

But what struck me in particular this time round was the portrayal (identical in book and film) of Leonard’s relationship with his mother who cared for him throughout his illness, spending every single day in the hospital with him. In his pre-dopa state, he is physically like a huge, docile baby. His mother spoon-feeds him, dresses him, entertains him (i.e. turns his pages, I guess), even changes his nappies. She looks after him and speaks for him. It is, simultaneously, complete devotion and utter captivity. His feelings are apparently equally torn, as Sacks says he sees in Leonard alternating expressions of pleasure and resentment.

But the thing, which may seem surprising but is probably almost inevitable, is that his mother (and many of the other patients’ relatives, too) is deeply unhappy with the initial improvement brought about by L-dopa. In many cases (in reality as in the film) the first reaction of patients to L-dopa is almost miraculous – from frozen statues to almost normal function (though this does not last beyond some weeks or months before very severe side effects set in and force the termination of treatment). But where does this sudden improvement and independence leave the devoted carer whose life and purpose revolves around the sick bed? Suddenly you are adrift, surplus to requirements, perhaps mostly a reminder of bad times. In fact, I recently read a (Danish) self-help book about how to make your marriage survive illness, where the authors discussed how couples often split up because they cannot handle the cure – the partner who was ill tends to get euphoric and self-centered, while the partner who was caring gets depressed and feels abandoned.

In a very small way, we experienced a bit of the same when Jon got better after he stopped the Sifrol that was giving him such hideous side effects (as described in posts mainly from August to October 2008). I found it hard to accept that he really was permanently better, that he didn’t need my help any longer and actively didn’t want me to give him his medication or even necessarily know exactly what he was taking. I found it surprisingly difficult to relinquish responsibility, especially over medication, and he found it quite impossible to live with me in control of it. He felt smothered, I felt rejected. I pleaded, he stone-walled. Eventually we saw a couples therapist and got over it, but not easily – and that was after just a few months of impairment. I have only the tiniest inkling of what it must have been like for Leonard and his mother. Enough, though, to require several tissues to mop up.

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.)

Driving (me nuts)

Right. I’ve just come back from spending rather a lot longer with my in-laws than either I or they had planned (though to everyone’s great credit, without any actual physical or mental damage being done to me, them – or indeed to my wife).

Plan A was for Marie to go to Denmark on her own a fortnight ago so that I could enjoy a quiet week home alone with one cat and several family-sized packs of English bacon while she did whatever it is she does for money. I would then fly up to join her for a long weekend of socializing before returning home together at the sort of leisurely pace generally set on the German motorways.

However. This was before we started reducing my medication and bringing back some semblance of a sane mind, and we had to agree that it was not, at that time, safe to leave me alone. So Plan B was set in motion, involving extended cat minding, a long and lonely drive for Marie while I snored and fidgeted in the passenger seat, and writing off the cost of my plane ticket which was of course much too cheap to be refundable. Plus, I should think, a certain amount of scurrying about in the ancestral home where they had not reckoned on my delightful presence quite so soon.

And when I got to Denmark, what did I do but … sleep some more. This insomnia stuff really is ridiculous: I can’t sleep at night, and can’t stay awake during the day. In a nutshell, the trouble is that once I fall asleep, I can’t stay asleep. Ten, maybe fifteen minutes under is all I get before some twitch or spasm wakes me up again. Many short naps makes the night feel like I have hardly slept at all, and the day feel like I hardly do anything but sleep, neither of which are the least bit satisfactory. For the record, my neurologist is supposed to be making me an appointment with the hospital’s sleep clinic – I am looking forward to an interesting night and hopefully a useful analysis.

Driving for myself has also become an issue. I was tested sometime in the spring and pronounced fit to drive anything with an automatic gear box. But I felt a lot better when I took that test than I do now, even with my mental faculties (largely) recouped. It’s an issue of independence, though, and of some practicality. For instance, Marie was unwell the other day when we had a birthday party to go to, so I decided to go alone. By car. Happily, going out was no problem – but coming back was much more … interesting. My driving foot had seized up, so I had terrible trouble getting my foot to the gas pedal, and even when I succeeded at that, there was not much I could do with it – the thing was just like a lump of dead wood. Salvation lay in taking shoes and socks off (with some help from the host who may have invited me for the last time). Once I could touch my feet with my hands, I regained feeling in them and all went well on my barefooted drive home.

The episode freaked me some, I must admit, and my first reaction was that I should leave off driving for a little while longer. Marie, however, does not deal well with such timidity, so despite my best efforts and some really rather creative excuses, I have spent much of the day practicing my driving with her looming in the passenger seat. Which is just as well, really, because she is off on some other work jaunt in a few days so if I can’t drive myself I’ll miss three lovely therapy sessions and most likely get cabin fever into the bargain. But now, freaking and anxiety behind me, I can spend the days pootling along at the safest of paces and watching in the mirror as the workaholic in the car behind me gets furiouser and furiouser. Could be worse.