Sunday, April 04, 2004


I was reading a book review in New Scientist magazine in which someone with a disability is quoted as saying that one of the secrets to success as a sick person is not to complain. OK, this person was in England, and they have that upper-facial-labial paralysis to begin with, but still, it made me doubt my blog. Which is all about complaining. Then I resolved this for myself by noting that the people who visit the blog come here to hear me complain. It's not like I roll into their living rooms and start whining. No, for my readers, this blog is a voluntary walk in the park, an invigorating sniff of Shadenfreud.

Onward then, to the complaining. The lack of sleep thing has been really awful. The baby keeps waking up, and staying that way, Crying, fussing. Last night was the first reasonable night since we got back from Hawaii. The baby slept reasonably, but then, my son did come into our room in the middle of the night and hassle my wife. He insists on being taken back to bed and tucked in. No matter how many times we tell him not to wake us up, the message has not sunk home. Still, taken as a whole, both my wife and I feel on the mend today. We just need the goodly trend to continue.

But it did inspire me to add an item to my list of Ps-and-Qs (the survey I am going to do of past ALS research, to see if the researchers really have looked for all the obvious connections of possible causes to ALS. The item is: Sleep Deprivation?

My left hand has been having 'fasciculations.' Not major ones. This is where the muscles twitch on their own. Maybe it is due to stress of the Hawaii trip, the lack of exercise there, or the fact that a couple of days ago I squeezed off an historic 49 on the Grip Builder. And once again in the 'I am not sure' category, my left leg seems a bit more gimpy now. Then again, maybe it always was, and I am imagining things. And also then again, I got almost no exercise during the Hawaii trip, so maybe that's the cause. And then ... there's always the sleep deprivation. So I am following my usual policy that the symptoms don't count until I feel less exhausted.

I noticed that when taking the riluzole, if it lingers in the mouth for even a brief period, that spot of the tongue and roof of the mouth touched by the pill will go numb. I asked the clinic doctor about this and he took it from the angle of whether this is a problem and how to mitigate it. Which means he had no explanation and had never thought about it or heard about it. I was, of course, more curious as to why. So his answer did not slake me. Now I think I understand what is going on. I read an article in New Scientist magazine recently about the brain's 'master switch' (the magazine likes to use jazzy story pitches but is full of fascinating information). The 'master switch' is glutamate, an essential neurotransmitter, apparently the main one, without which nerves cells could not transmit signals. You would die without glutamate. Anyway, riluzole is a glutamate inhibitor (among other things) on the theory that the cause of motor nerve cell death in ALS is due to the motor nerves accumulating too much glutamate (for some unknown reason) by not disposing of it. But it stands to reason that this inhibitor would stun any nerve cell it contacts, including the sensory nerves in the tongue and roof of the mouth. So that explains the numbness. And probably also explains the nausea that people can feel in their stomach when they start taking the drug. (What does a numb tummy feel like?). Anyway, the whole riluzole strategy seems like a real shotgun approach, very non-specific, not well targeted. By the time the drug gets all the way to my brain and spine, the effect has got to be miniscule. But then, you wouldn't want a big effect. I would probably go into a stupor. I suppose this means that all the nerve cells in my body are ever so slightly in a stupor. Those of you at home can reproduce this stupor by reading my blog every day.

As for Iraq ... How can I know what is really going on? I read Riverbend sometimes and she paints a picture that is not always reassuring. Her blog has the feel of authenticity. But I suppose she could just be a very subtle propagandist. Speaking of possible subtle propaganda, the US-based media come to mind. I wish I had saved the URL but yesterday I read a wire-service story about U.S. Marines waiting the re-enter (!) Faluja. The article featured quote after quote from U.S. soldiers saying that they sure were angry about the mutilation of the four Americans on Wednesday, and their emotional reaction was to get revenge, but that it would not be wise to seek revenge, as it wouldn't help and would inflame Iraqi resistance. The article may be 100% true. I am not alleging a lie, yet ... I don't know about you, but to me it sort of smelled of a party-line message, a picture of what we would hope our troops are thinking. Something to reassure us back at home. Whoa, slow down! Before you go accusing me of holding conspiracy theories, just grant that all I said was what I said above, and no other statements were implied. I think Philip Knightly wrote "The First Casualty," which is a stunning study of the death of truth in war. It doesn't have to be deliberate, or sinister. But with so much at stake, I really feel like I don't actually know what is going on in Iraq. I find myself trying to read between the lines.
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