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.

Shrinking

Last week we were in Denmark, attending a double 70th birthday party, and doing a bit of house hunting on the side. Marie also had to see some clients, get a tooth fixed, stock up on herring – general tasks of life. Meanwhile, I stayed with Marie’s parents who (unlike their daughter) are excellent at just letting me get on with life at my own pace. So I took lots of reading materials, two computers, a box file of scientific papers to read – and what did I achieve? Two and a half paperbacks read, admittedly thick ones, but in the old days I would polish off two books in a day. Not now – I have often forgotten the beginning of the sentence before I get to the end, which lends a certain surreal quality to much of my reading.

But if that is the case, you ask, how come I can writing this blog? Two reasons: I only write when my L-dopa is at its optimal level (and I then write very, very slowly and deleting a great deal as I go along), and Marie edits the resulting stream of strange consciousness into text afterwards. At the moment, writing the blog feels like hard work, as does sorting and editing the photos I took at the birthday party which is something I would normally actively enjoy.

The problem, according to shrink 2, is that for me to start on any task I need to be triggered into action. This new psychotherapist (shrink 2) seems to be even better than shrink 1, who was very competent but not an expert on Parkinson’s. Which was fine since it turned out that at the time it was she who must be obeyed who had the pressing problem (a problem which turned out to be me, of course – however, anyway, dot dot dot). Shrink 2, though, is an great expert on Parkinson’s and started out on our first date by describing me to myself with frightening accuracy, including the fact that I don’t get things done because I quite simply lack the drive – apparently very common with Parkinson’s.

Given that shrink 2 delivered an excellent diagnosis, could it be he has some form of treatment up his sleeve? The snag, you see, is that all this “triggering” can easily come over as “nagging” (especially, I suspect, when done by one’s beloved wife). OK, I accept that I need to be prodded, but it’s a very delicate balance between getting a helpful nudge and being nagged. Which really doesn’t help, but just makes me screw my stubborn behind even further into the sofa.

It is of course also important that I’m nudged/nagged at the correct phase of my symptoms. No use starting the morning by discussing the day’s programme as I am unlikely to be focused enough to remember it later. No use suggesting I should go for a walk at noon as that is a low point in my day, whereas I’m at my physical peak between 1 and 3 in the afternoon. And no use trying to have a sensible conversation with me after 9 pm as I’m generally too tired to think by then.

On top of all this we are doing a diet experiment this week and next, based on the idea that protein in the diet can interfere with of L-dopa (because protein breaks down into amino acids that compete with L-dope for absorption in the gut). So one should never take L-dopa too close to a meal full of protein-rich foods, but for some people it is apparently worth going further and living on a generally protein-reduced diet. Finding out whether that also works for me involves eating a low-protein diet for two weeks to see if it makes me feel better. Can’t say I’m looking forward to it, but if there is a chance it could reduce the symptom fluctuations, I’ll give it a go. It might also help me loose some weight. 90 kg at the moment, and I’d like to get to 80 kg. I may make it, the low-protein food has been fairly horrid so far and I expect it to get worse. Ever the optimist, me.

Typical Parkinson's

I saw my personal shrink for the first time a few weeks ago. He specializes in Parkinson’s – not the physical manifestations, but the mental ones. He described me to myself quite accurately (i.e. I am typical for a Parkinsonian). And although I claimed to be apathetic, and he argued that I suffered from a lack of drive (typical P). And much as I hate to say it he could be right, so my next claim is that it’s just a matter of semantics.

I’m also mildly offended to be described as typical – I’m special, me. I want the phrase “when you have seen one case of Parkinson’s, you have seen one case of Parkinson’s” to be true. Although I can now spot a fellow Parkinsonian from 50 paces – the slow shuffle, the stiff arms, the sticky feet etc. – I am still sure each and every one of us has our own idiosyncrasies.

I seem to oscillate between on the one hand claiming that I’m very, very sick, as if I’m not going to be believed, and on the other hand shrugging it off as “just one of those things” and trying to pretend there are no problems – but if I’m that healthy in mind and body what am I doing seeing my own personal shrink? (Actually the plan is to have part of the session as a couple and part to each ourselves, but I suspect the couple stuff will also be focused on me.)

The pills also have a large effect on my mood; I bounce from lethargic couch potato to pacing panther when I endlessly walk from one end of the living room to the other in the same way that animals in zoos trace out stereotypical behaviours. Shrink is on holiday so there will be a month between first and second visit, more than enough time to ponder my mental condition.

My physiotherapist is also on holiday, but to make sure I got no rest I had an appointment with the speech therapist, the first in 3 months. The good news is that she saw no change. I, on the other hand, have started having minor difficulties swallowing, and some cheek and tongue biting. Minor symptoms, I know, but worrying nonetheless – and I probably focus on them particularly because of background in dentistry and research on the mechanics of eating.

Last week we saw my neurologist who had the report from the evaluation at ParkNet. We mainly discussed drugs, dosage, timing, etc. It feels to me that we now have the correct drug cocktail, all the right ingredients, so all we have to do now is fine tune the dosage(s) and timing(s). We also had an appointment with the Parkinson’s specialist nurse, though it turned out she didn’t know why she was seeing me and neither did I. But we had a nice chat, and it was reassuring in a way – she was the first person to imply that I was doing OK and that she didn’t see any major deterioration.

It’s been hot and humid again. Marie was away for a week in Korea which I spent sweating and ignoring the blog, computer and cat. The cat, however, makes its wishes known with sharp claws, mainly demanding food, but sometimes angling for affection (a bit like me, really).
My next task is to organize the itinerary for our holiday – a week of random driving through the French country-side and a week in a remote cottage. I plan to keep this as unplanned and random as possible, but Marie has other ideas – though I think we can come to some kind of compromise (i.e. we may be spontaneous on Tuesdays and Thursdays, and for the other days we will have a detailed route map plotted into Mrs Tomtom – “At the roundabout, turn left”).

And now as I write I notice my typing is getting a bit blurry, so it’s pill time again ...