Am I me, and is that good?

JON: I’ve been looking back over my previous blogs, many of which are basically just diary entries – “last week we went to the zoo” kind of thing – but a couple of things stick out like sore thumbs. When we started blogging we promised to be strictly honest and I’m surprised to see just how honest we have been. Sure, there has been some editing and there is very little mention of our sex lives (or should that be sex life?) – not that there is much to tell, really, since the goat escaped.

Marie talks a lot about how I have changed, and how she initially raged (against the dying of the light) while I just grieved quietly. But have I really changed? While I am still me, am I the me that I was two or three years ago? I think not. I’ve asked friends if they have noticed any changes, and they all say no, though I suspect they are just being kind.

For instance, before I had PD I made lots of off-the-wall jokes. I might ask, apropos of nothing at all, “do you realize that 50% of doctors perform below average?”, or I might pretend to misidentify one of the stars in a film and say that “I’ve always liked Buster Keaton” when the actor is in fact Brad Pit. OK, perhaps these are not examples of stunning wit, but with a following wind they would raise the occasional smile. But this seems to have changed of late, now people look at me (more) strangely and I can almost hear the cogs whirling in their brains, wondering if that was a joke, or my brain failing.

It might partly be due to the change in status. Pre-PD I was the “serious(ish)” scientist with three degrees, a white coat and 100+ publications. Now, I’m that odd bloke who makes even odder comments, the one who sits in the corner and twitches. We have a friend who says “vroom, vroom” whenever he gets in a car – is he demented or just making a very poor joke? In his case the smart money is on dementia, but you get the point?

Another minor problem is that I seem to make weird statements. I start to say something, but then get ahead of myself and leave some of the connective words out. So instead of saying “look at the fat bloke on the TV”, I’ll just say “look the fat TV”, which makes sense to me but not to anyone else. (Of course, I’ve always been used to people not understanding me – I doubt I ever managed to explain my interest in the biomechanics of the temporo-mandibular joint (TMJ) to anyone – but this new incomprehension is more troublesome.)

Along with not finding words when I need them, I also switch words around and end up talking nonsense. For example this morning I was looking at the cat so asked Marie “can you put the cat on” when actually I wanted her to put the radio on.

And I am still having problems with short term memory which I suppose I must accept is unlikely to get much better. I forget appointments, forget when it’s my turn to cook dinner, forget to do things I promised (and meant) to do, ask a question and almost immediately forget the answer. It is really very annoying, for me and for those around me. And it is of course also hugely worrying because I can’t know whether this is more or less a stable situation or the beginning of a slippery slope.

So I get paranoid. A concrete example is our attempts to teach me to speak Danish. We had got into a routine where we did half an hour a day after dinner. Then some months ago the book was tidied away into Maries office and only reappeared when I recently asked about its whereabouts, but we have a yet to do anything with it. (OK, this is just as much my fault as it is Marie’s – but I have the excuse of being a Parkinsonian with auto-motivation issues.) Is dropping the lessons just an oversight, or is that we are both terrified that they will bring my memory issues to the fore?

(MARIE: I was horrified to read the above! I had really, honestly just tidied the book away when we were preparing for the first house viewings, and then forgot about it in the middle of much busy-ness. I had no idea that Jon was fretting that I might have hidden the book because I thought he was beyond learning anything new. And he never said a word, just sat there quietly nursing his fear. What would we do without the honesty of this blog?)

I manage to cope without speaking Dutch, but this is mainly because the average Dutch person speaks fluent English so there is very little incentive to learn (and Marie has learnt sufficient Dutch to cope with most situations). But if Plan A comes to fruition and we move to Denmark, I’m going to need to be able to at least understand some Danish (they are not quite so internationally minded there as in Holland). So far all I can really do is ask for a cup of tea – and I don’t even much like tea. But we’ve decided to restart the daily Danish lessons as of today so hopefully the Danish world of beverages will soon be at my feet. Now, if I could only remember what they call their beer …

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.