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.
14 September 2009
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1 comment:
this is now the 2nd time you have mentioned lack of drive. We never heard this from our doctor but it is for sure something that I can easily see within my husband now for over the last few months. And this has made me realize that it has been going on for some time now. It's like pulling teeth to get him to get out of the apartment. He used to be extremely active. Now it's a job just to use the tv remote control.
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