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.

Feeling fine

MARIE: A couple of days ago a long-distance friend called to say happy new year and all that. We don’t talk so often, so when we do there’s this whole agenda that needs dealing with. Since both our husbands are, shall we say, non-standard kind of guys, their mental and physical states always come high on this agenda. So I told her about Jon’s application for disability pension (decision expected any day now), the plans for him to try Ritalin (prescription expected any day now), etc., etc.

And then she asked me, ‘But how are you doing? Do you remember to look after you?’ It’s a good question, and one I cherish. It’s so easy to focus on Jon because he’s got the disease, he gets the treatments, he is the one whose condition keeps changing – there’s always something to tell, some new worry or hope or idea. This focus on the sick partner is boringly commonplace, leaving great hordes of caring partners somewhat forlornly on the sidelines – half-forgotten both by themselves and the world at large. (I hesitate to define myself as Jon’s carer because it smacks of more serious disability and more extensive service – but I also recognize that this is just obfuscating, because in fact I do already look after him in a number of ways that are not ‘normal’ between spouses.) Doctors and nurses ask about the carer because they’ve been trained to, though I’m not sure they necessarily know what to do with the response. So it’s really lovely when friends and family ask, and care about the answer.

And do you know, the strange thing is that I’m fine. Compared with one year ago (as one is supposed to do at new year), I am very significantly better. Last January Jon and I were just starting to see a psychologist because we were hard at work making each other as unhappy as possible. The main bone of contention was Jon’s inactivity – I was frustrated that he did so very little, while he felt that it was perfectly reasonable to take a year-long nap. The psychologist focused on my aspirations for Jon and made me accept that Parkinson’s has changed our lives forever and that no amount of pushing and prompting can bring back the old Jon, because he just isn’t there any more. Very painful, but also very necessary.

I feel that I am now, at last, at peace with the disease. It has caused an irreparable loss, and there will be more losses to come, but there is nothing whatsoever I can do about that. All I can do is try to live as well and as contentedly as possible within the constraints of the disease, and help Jon do the same. There’s nothing inherently terrible about that: all lives are constrained by circumstances – practical, financial, familial, and for us also medical. It’s the impotent rage that is painful, and I really do think I have put that behind me. Jon never raged, although he has quietly grieved – as, I suppose, we both continue to do to some extent. Another fact and facet of life.

The remarkable thing is that it seems my new-found ability to calmly face the realities of life with Parkinson’s has rubbed off on life in general. We are in the middle of all sorts of potentially mega-stressful processes which should be making life difficult but aren’t.

• Our house is up for sale in a pretty depressed market and could take ages to sell. But it’s a nice enough place to live in the meantime, and having done all we can (de-cluttered and made nice, carefully picked an estate agent, priced and presented the house to best advantage) there seems little point in obsessing further about the sale.


• Our finances are in flux with Jon’s benefit application outstanding. But it’s an inevitable process, there’s nothing we can do to affect its speed and little we can do to affect the result, and we’ve prepared as best we can for the various potential outcomes. Again, fretting about it will achieve nothing but a bad temper, so we don’t (although I do call the benefits people every couple of weeks to check on progress).


• My work future remains undecided since the employment contract I had been led to expect has failed to materialize. But this is due to external circumstances not under the control of my potential employer, relations remain extremely hearty all round, and we have negotiated the best possible continued freelance arrangement – and frankly, until we have sold the house and can move closer to my (un)employer, it makes no real difference whether I’m working freelance or as staff. No point worrying about it, we’ll just see what the future brings.

And the last, but by no means the least, ingredient in a contented life: Jon and I are back playing on the same team. We are being attentive, loving, and considerate to each other. We’re still human and have the occasional tiff and grump, but it is on a background of expecting the possible from each other and of trying to live up to that expectation. And we generally agree about what is important, realistic and desirable in life. It’s pretty damn good, actually.

So that is my new year’s wish for family, friends and readers: that, whatever the circumstances, challenges and prospects for 2010, you should be as fundamentally fine as we are.

Cold (s)naps

JON: Nothing new on Ritalin yet – possibly my prescription is stuck in the Xmas mail. The sooner it gets here the better. Meanwhile:

Xmas week thick snow covered most of northern Europe and our out-door thermometer recorded a low of –11 C – and that’s without taking into account the wind chill factor. I know this for a fact since I was made to walk around in it.

And that’s it, really, in terms of holiday activity. As often before, Marie and I have ignored Christmas. Okay, we ate and drank well, and were even moderately merry, but I am very pleased to say that there were no decorations, gifts, crackers or silly hats. Some good books, a number of icy walks, much cooking (on Marie’s part) and a fair bit of napping (on my part). Pretty good. I am planning for a repeat over the New Year’s break.

And I have, for once, deserved a break, because earlier this month I was quite the jet setter, flying first to Nottingham (on my own!) to give a lecture and then to Leeds with Marie to see the kids and grandkids, all of whom are wonderful, intelligent, beautiful and charming (though I may perhaps be slightly prejudiced).

The visit to Nottingham went well. I stayed with a friend, and we talked much of teeth, food and ‘the good old times’. Happily, the lecture I was there to give went OK too. I’ve shown this material before and thought I had the timing down to a T, with a number of loops and possible exit points to adjust the length, so my running slow was not too problematic. Near the end I lost it, though, and found myself staring at the screen in bewilderment before admitting that ‘I’m sorry, I haven’t a clue what this slide shows – let’s just move on…’

But I got interesting questions, no-one fell asleep, and I got taken out for what might have been a rather fine meal had I not spent so much time talking that when we finally arrived at the restaurant the chef had gone home. However, they served beer and peanuts so not all was lost.

Giving the lecture was, I think, less stressful than the one I gave last year, This I suspect was mainly due to the timing. Last time my 9am lecture involved a 5am start so I could get my body in gear, i.e. have sufficient time to enter my ON state, whereas this time we planned the lecture so that I would give it during my normal ON period.

Medical bulletin: Hot news is that I have a new appointment (at last) to have my sleep patterns recorded at a special hospital clinic. We tried this last year and it was an utter disaster. I was laboriously wired up to a 32 channel EEG – looked like a porcupine gone very wrong with cables super-glued to head, chest and limbs. Marie left the clinic at about 8:00 pm, I fell asleep at 08:01 pm and immediately ripped the electrodes off my head – very painful if you are awake, quite painless if asleep. By this time the night shift had come on and nobody knew how to replace the electrodes. Which kind of confirmed that I had a sleep disorder... This time it should be less dramatic, as I’m told I just twitch a bit when I’m in dreaming. Well, I twitch when I’m awake, don’t I, but we’ve been down that road. OK, I also jerk about and talk quite loudly in my sleep, which I admit is a bit anti-social. We’ll soon see what the doctors think.

Hypo-activity

JON: It would have been nice if my psychiatrist had turned out to be young, black and musical because then I could have titled this blog “shrink (w)rapping”. But he isn’t so I can’t, and it wasn’t a particularly good joke anyway – but hey, cut me some slack: I’m a sick man. At least both psychologist and psychiatrist agree that I have a pathological lack of drive, or as they say in shrink-speak “auto-motivation”.

What this means is that I don’t do things. That includes things I hate (like filling in tax forms) but also things I used to actively enjoy. I just sit there like a large lump of lard – sometimes with the TV on, most times with it off which is perhaps even more worrying. The psychiatrist was called in to advise on whether drugs could help get me out of this rut where psychology alone could not. He suggested two possible routes of action, Ritalin or Bupropinol.

Yes, Ritalin is known mainly as the drug of choice against ADHD (attention-deficit hyperactive disorder), and while admittedly my condition fits with the first two letters, no-one can accuse me of being hyperactive. But the psychiatrist explained that Ritalin works by focusing the mind and concentrating attention, which sounds just the ticket for me. Also, it has the advantage that it acts quite fast, so I would know in the course of just a few hours whether it is having the desired effect.

Bupropinol, on the other hand, is an anti-depressive used against apathy and suchlike – and, oddly, to help people stop smoking. Its action takes weeks rather than mere hours to appear, and since I (and Marie and the psychologist) don’t think I’m depressed, this seems a less attractive option. So after being sent home to think about the options, I have decided that I’m going for Ritalin first. Watch this space.

Actually, I’m not sure I’m 100% happy with being given the choice, On the plus side it gives the illusion of control, but the downside is that if there are side effects then it will be because I chose them. And since both drugs would be prescribed off-label (i.e. for a use other than that specified by the manufacturers) I suppose there could be unusual and unexpected side effects. Ho hum.

And another thing: today we get our third potential house buyer through the door. Marie had been cleaning and dusting and generally being hyper (should I offer her some of Ritalin?) and I’ve been cowering in a corner trying to read – rather a good book, as it turns out. It’s called Bad Science and with me the author Ben Goldacre is preaching to the converted – but he has fresh ammunition and some of the descriptions of the utter crap people are prepared to believe are . . . well, you have to see to believe it. The worst example is a teaching pack called ‘Brain Gym’ which is apparently used in UK schools and which teaches patent nonsense such as that processed food contains no water and that water held in the mouth hydrates the brain directly. Sadly, one is not allowed to shoot these purveyors of such garbage, and even if I got hold of a shotgun I’d probably miss because of the Parkinson’s.

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.