Hobbies

MARIE: Jon said in a dim and distant post that he was playing with his camera once more and would soon show some of the results. And now that he has, at last, started on the Ritalin, he has stopped talking about doing things and started actually doing them. Jon took his first tablet last Saturday and frankly we were both a bit concerned as nothing much seemed to happen. But already on Sunday there were signs of an effect, and by now one week in it is quite clear that the drug is helping him break down the barrier between idea and action.

In fact, he is now rather busy, not only with the photography but also with painting and sketching, researching some equipment for an old colleague and friend, and ebay-ing (is Ritalin turning him into a shopaholic? If so, the fumes are affecting me as I’ve also just discovered the joys of ebay).

Don’t get me wrong, Jon still needs his rest periods for his back and to deal with variations in drug effect, the motor symptoms are of course the same as before, and he still gets tired and loses concentration. But before Jon was satisfied even at the best of times just to be passively entertained by the TV and radio, whereas now he uses his peak performance time actively on things that engage him, things he enjoys, things that serve a purpose or have an aim, How wonderful is that?

What with suddenly having so many things on the go, Jon has left it to me to make a little selection of pictures for the blog, so I’ve now sprinkled around a few holiday shots, some family pictures and a few of Jon’s more artistic studies (shadows, textures). However, he did specifically select the picture adorning this post.

JON: This is a picture of milk droplets in water. OK, it’s not going to end up in the Tate Gallery, but it took a surprising length of time and many false starts to generate. Which is the whole point: it was creative, fun, time consuming – and, most importantly, gave me a place to hide from she who must be obeyed. I think I’ll leave these droplet images alone for now, although I have several ideas on how to edit and improve them. Call it a work in slow progress.

To sleep

To sleep, perchance to dream

– and to record it all on a computer. I have just been back to the sleep clinic for my second appointment (the first was two years ago). A sleep clinic is a place where they superglue numerous sensors, electrodes and other devices to you to measure overnight heart rate, respiration, brain activity, temperature, movement, twitching and probably much else besides. To finish it off, they fit you with a really sexy bathcap-type arrangement made of gauze, which ends in a long ponytail of cables. It took about an hour to get me fully wired.

The purpose, of course, is to determine if there is anything wrong with your sleep that medical science can help with. In my case, we suspect REM sleep behaviour disorder (quite common in Parkinson’s), which gives intensely vivid (and often disturbing) dreams and which short circuits the mechanism that normally stops you from acting out your dreams. In my case, I mainly talk very loudly in my sleep and tend to jerk about a lot when I dream, but in bad cases people can attack the bed partners and/or hurt themselves. Needless to say, this doesn’t make for restful nights.

Last time I was at the clinic I was suffering from side effects of the dopamine agonist Sifrol I was taking at the time – a real nightmare that had me sleep walking, hallucinating, falling down and generally in a serious mess. In the clinic, I insisted Marie put me to bed about 8 pm, whereupon she went home. Five minutes later I was asleep, and one minute after that I ripped off half the electrodes. By this time, of course, the technicians on the day shift had gone home, and the night shift did not know how to reattach the sensors. So I waited for Marie to get home (it’s a 45 minute drive) and then called to ask her to come and collect me. We finally got home around midnight. For me to be able to rip the electrodes off was a fairly dramatic indication that I had a sleep problem – those people have good quality superglue so ripping all that stuff off HURTS!

Fast forward two years to the present day and I’m feeling significantly better but not 100% “fixed” in terms of my sleep problems. I need to take a slow release Sinemet (L-dopa) tablet before bedtime plus the muscle relaxant Rivotril to have a chance of a decent night The snag is that although I am blissfully unaware of it myself, I still fidget and jerk and kick and shout (and snore). Marie had to move out of my bed many months ago.

So I’m back in the sleep clinic for a second attempt at measuring what actually goes on in my head and body when I’m asleep. This time, they ask me to make do without the muscle relaxant, which is a pretty miserable experience. I toss and turn, then at 3:45 take an unscheduled pain pill for my back. I sleep fitfully until I wake up at 7:15, shortly before the nurse/technician comes to rip the electrodes from my rather delicate skin. I bite my lips and attempt to look brave, not that this cuts much ice with the staff, but I think I might have Marie fooled. I am assured that they got the measurements they were hoping for, and I will have the results explained to me at the next appointment with my neurologist in just under a month. I am such a patient patient.

In other news:

My tricycle has been approved by the local authority so now I am just waiting to take possession (on indefinite loan). Delivery may take many weeks, though, but since it’s hardly weather for biking I can’t say I mind.

And I now have my prescription for Ritalin – we all await the results with interest, particularly since this is the first time the psychologist/psychiatrist combo has used the drug on someone with Parkinson’s. So I’m a guinea pig for this off-label use, i.e. to provide purpose and instil the will to “do” into Parkinsonian lives. They have good experiences with stroke victims, apparently…anyhow, watch this space.

Further, I have had my evaluation with the driving neurologist. No news yet to say whether I can just renew my licence, have to take a fresh driving test, or will be banned from driving forthwith. It’s fingers-crossed-time, though I’m not feeling too worried as I think the evaluation went quite well.

Lastly, I’m also crossing fingers, toes and assorted other appendages for next week’s appointment with the pension doctor who will assess my level of disability, which in turn will determine the size of my pre-retirement age pension. I’m told the examination will take an hour, and that I shouldn’t worry about it, but this is significantly easier said than done. Marie and I both obsess some about our preparations as this really is very critical to our quality of life for the next decade. I won’t say “wish me luck”, but please wish me an informed and intelligent doctor!

Much excitement!

MARIE: I don’t think I’ve mentioned it here before, but I’ve written several book reviews for the magazine of the Danish Parkinson’s Association – because I am an activist at heart, because the book world is my world, and because it’s one of the few jobs I am able to do for the association from abroad.

For the next issue I am reviewing Michael J. Fox’ latest book Always Looking Up which was recently translated into Danish – because, as we all know, MJF has had Parkinson’s for the last 18 years, and been the world’s foremost PD ambassador and activist since he went public about his diagnosis over a decade ago. I contacted the publisher some time ago to get a review copy, and in his response he said there was a miniscule chance that he could arrange a phone interview. Although I naturally said I’d be immensely interested, I must admit that I thought ‘yeah, right’ and expected to hear nothing more of it.

But suddenly, late Friday afternoon, there was an e-mail from the publisher that they had an opening the following Tuesday and that although MJF would give only one media interview in connection with the Danish edition, they’d like to offer that interview to me. WOW, I thought, immediately followed by OH – MY – GOD! I’ve never done anything remotely like that before, never conducted an interview and never talked to anybody one tenth that famous. When I told the association, they got really excited and immediately decided to clear six pages for interview+review and make this the front-page story – so no pressure there, then.

The weekend was spent researching background and working on questions and playing around with a set-up that would allow me to record the interview – all of which involved much help and advice from Jon. Obviously, I was the most nervous, but I think we were equally excited, when after an interminable day it was at last time to make the call. And it went really well! (Obsessive preparation pays.) I’d been told I would have 20 minutes, but we talked for 40. I had prepared two pages of questions and didn’t expect to get through them all, but in fact I got to think up extra questions as we went along. And, most importantly, the tape recording worked so I can now sit at leisure and extract the best quotes and make sure I remember everything correctly.

I don’t want to come over all star struck here, but I am really impressed by MJF. Sure, giving interviews is part of his job, but he performs that job against heavy odds and with impressive energy. He is knowledgeable, thoughtful and insightful in his answers, and he comes across as a really nice person. I hope I can do him justice in the article!

JON: It was very exciting that Marie got to interview fellow PD-person MJF. No reason to be overmodest when she writes it up here, she certainly has nothing to be modest about and I’m very, very proud of her. As always, though, there is a fly in the ointment: the harder she worked on preparing for the interview, transcribing it afterwards, and now writing it up into a proper article, the less she does for me. Why, only yesterday I had to make my own tea. Imagine my distress!

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.