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.

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.)