Friday, April 30, 2004


I did have something interesting to say. I did. But I forgot. My wife and I went and had pizza, all by ourselves, because the babysitter watched both our kids this time. We browsed in bookstores afterwards. I bought a used book, about WWII bomber pilots. I should feel guilty about adding to my pile, but I don't, as I did recently finish The Naked Ape by Desmond Morris. Personal interest only, don't run out and buy it. I am most of the way through Cicero's The Laws. This is the one that was interrupted by the birth of my daughter 16 months ago.

Sorted pills today. Renewed my riluzole prescription by phone and the automated thingy gave me some chaff which I think will clear up.

Took out some drywall nails from the floor joists above the garage.

Transferring files from my wife's ancient laptop to her spanky new computer. One floppy at a time. It doesn't network.

Fiddled with the iPod music organization this week. Realized I had left some things out.

Went on a small hike with the family today before lunch.

Dug up a couple of weeds.

Thursday, April 29, 2004

Ask The Experts

My wife found a friend to babysit our son, and we went with the baby to an ask-the-experts forum on ALS. I was underwhelmed because the event was pitched at the level of the general public. It was very slow, and thin on content. Plus too many riffs about the-slide-show-on-my-laptop-is-not-working (every presenter had this problem). But at least I had the serenity to realize that my expectations for a past-and-furious technical discussion with hot questions from the floor were out of line. My wife correctly pointed out that if I wanted that, I should have gone to another recent event aimed at the researcher community.

So I told myself that I was there to absorb the personalities of the presenters, and feel reassured. I didn't. They all seemed frivolous. My reaction was: My future is in the hands of these clowns? That's probably unfair. But there are lots of researchers, and lots of really promising work being done in the lab. I plan on living in an active, self-mobile way for five year at minimum and probably more than 10. So I will be around for the advances in treatment, and the cure.

There were only three people in wheelchairs and they all smiled at my daughter as she toddled around in her pink pajamas. My daughter was the star of the show. The cute thing was that when we arrived, my wife and I put on name tags and then the baby sat up in her stroller, made an urgent noise, and began patting herself on the chest. She wanted one too. So we made one for her. She wound up walking around with it on her back.

Following up on that woman soldier in Iraq, she amply demonstrates the principle that the respect and thanks that we should have for the sacrifice our soldiers make does not mean that we have to support without question the leaders who deploy those brave soldiers around the world. Indeed, our duty is to use our freedom to challenge our leaders. (You heard that here first):

Monday, April 26th, 2004:

I don’t believe that the current Administration cares about those soldiers, though. Talk is cheap. This Administration talks a lot about us, asks a great deal of us----and does nothing but make things harder and harder for us. Cutting VA benefits? Cutting the size of the force so that more work can be asked of fewer soldiers? Their arrogance astounds me.


Wednesday, April 28, 2004


I feel somewhat dull today. I tore down some stuff in the garage. I want to go for a short affirmation jog soon.

The report from 4/5 also said they saw fasciculations on my tongue. That's the whole bulbar thing, which is undesirable.


Tuesday, April 27, 2004

Wake up

Was hot yesterday too, but not the unbearable, I'm-frying-in-a-pan kind. The kids played in the sprinklers. Our baby and the friend baby had poopies at the exact same moment. His started running down his leg, which prompted some sudden movements by the adults. I scooped my baby girl up and too her inside to change her. I expected a runny mess until I heard the "thump!" as the egg-sized turd hit the floor.

Football is a game of inches, parenting is a game of seconds. There is an awful lot of staged decision-making you have to do. The baby either is crying or might cry if left alone, and you have to wash your hands, but you also have to secure a poopy diaper and a bunch of wipies, and clean the floor. And you have to keep the baby away from the dirty diapers and wipes, and that spot on the floor. And when you're done with that, go outside and hose down the lawn with vigor, wherever friend baby may have dripped. And try to keep your son out of it when he comes over, stands right where you want to hose, an asks you what you are doing with the hose.

Anyway, it all worked out in the end. We later had dinner on the back patio, in our paradise garden. We slept with the windows open (by virtue of the screens I had put on a year or two ago), and I woke up naturally without an alarm clock. That last bit does wonders for your health! It also helps that my wife is classically beautiful and she's the first person I see in the morning.

Monday, April 26, 2004

a somewhat anxious individual

The ALS center sent a letter to my local doctors summarizing their recent evaluation of me in the workshop. The letter is useful because they reveal what their expected forced vital capacity is for me: 5.25 liters. That's a tall order, as the chart that comes with the volumetric thingy I have says that somewhere between 2.9 and 3.1 would be expected. But that is when breathing normally instead of trying to max out, since the instructions that come with the thingy say to exhale "normally." The respiratory therapist told me in an email that when practicing I should try to max out (by exhaling as much as possible beforehand). Based on this, she said I should be able to get to 4000 mL (4.0 liters -- bless the metric system!) with ease. But I have gotten it past 5000 mL. However, since the thing physically will not go any further than about 5.2 (I can tell, by turning it upside down), I have no way of scoring myself at or around 5.2. Or exceeding that.

On to the fun part. The letter also says of me that "[He] is a somewhat anxious individual but he appears to be in reasonable control of his emotions." They have a confusing system for scoring my muscle strength, reflexivity, and general messed-up-ness. They rate me at 42 out of 48. I gather than 48 would be a normal person.

I can also win as white:

guest2365 vs. Gengis (1400) --- 2004.04.26 17:33:59
Unrated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move guest2365 Gengis
---- ---------------- ----------------
1. e4 (0:02) e5 (0:02)
2. Nf3 (0:03) Nc6 (0:06)
3. Bb5 (0:01) a6 (0:02)
4. Ba4 (0:02) Nf6 (0:04)
5. Bxc6 (0:05) dxc6 (0:05)
6. O-O (0:03) Nxe4 (0:04)
7. Re1 (0:03) Qd5 (0:14)
8. d3 (0:03) Nf6 (0:08)
9. Rxe5+ (0:02) Qxe5 (0:09)
10. Nxe5 (0:03) Bc5 (0:08)
11. Be3 (0:10) Bxe3 (0:07)
12. fxe3 (0:02) O-O (0:01)
13. Nc3 (0:07) Re8 (0:02)
14. e4 (0:05) Rxe5 (0:07)
15. Qd2 (0:42) h6 (0:11)
16. Qf4 (0:02) Rg5 (0:28)
17. g3 (0:33) Nh5 (0:14)
18. Qxc7 (0:07) Nf6 (0:48)
19. Rf1 (0:07) Nd7 (0:12)
20. Qd8+ (0:52) Kh7 (0:08)
21. Rxf7 (0:05) Ne5 (0:22)
22. Rf8 (0:55) Ng6 (0:44)
23. Rf1 (0:51) b5 (0:42)
24. Qc7 (0:17) Rc5 (0:24)
25. Rf7 (0:10) Bd7 (0:45)
26. Rxg7+ (0:46) Kxg7 (0:05)
27. Qxd7+ (0:01) Kg8 (0:04)
28. Qe6+ (0:14) Kh7 (0:07)
29. Qf7+ (0:13) Kh8 (0:15)
30. Qxg6 (0:01) Rg8 (0:06)
31. Qxh6# (0:04)
{Black checkmated} 1-0

This guy was a named user ("Gengis") with rating of 1400. In real USCF terms that would be like 700.
Bye-Bye Bush!

If Bush loses in November I see myself running out in the street and singing "God Bless America" with tears in my eyes, faith restored, driving around town with a huge American flag sticking out of my economy car, big stickers on it saying "OH YES!!!"

If he gets back in, I see myself laying disaster supplies in the basement, joining the class action lawsuit against Diebold, and (shudder!), going to the mass rallies. Please don't make me do that last bit, as I loathe it.

Sunday, April 25, 2004


Hot and summery here (but not humid, and no mosquitoes). The kids ran through the sprinkler. I have a gimpy strain in the outer left ligament between the thigh and the cal (at the knee), but I do not think it is ALS-related. I now have a theory about what caused the cramp in my calf. I had been doing those stretches for my ankle mobility fervently, and you wouldn't think a stretch would exercise the muscle (or I wouldn't), but on further reflection, the calf muscle stays clenched during that whole stretch. So I have become last fanatical about it now. The ankle flexibility is restored, though I still find it hard to order the foot to flex up to its maximum extent. Not impossible, just hard.

Friday, April 23, 2004


I had a dream that they had sent me to Iraq on two separate tours lasting six months. (No, I have no idea what I did there, nor did it come up, in the logic of this dream, I only knew I didn't like it). I was writing a postcard to Moja Vera saying that I was worried they might send me back again, since they could do so at any time. Then it occurred to me to talk to my wife about finding some way I could get out of it. And I wondered why I hadn't thought of it before.

Later I had another dream in which the company I worked for had brought Ken Lay and some other Republican darling onto our board of directors, and had granted them six billion and nine billion in stock options, respectively. That disgusted me and I wondered if we could file a lawsuit against it.

Later in the afternoon (in the real world, not the dream world), Patrick's mom called back. She is amenable to a playdate. I didn't discuss the "trapping" issue with her since her English is tentative. I'll lay it out with his father. I think it would be great for my son to get closer to his "enemy."

Thursday, April 22, 2004

Sash cord

The windows in our charming old house operate on the rope-and-weight system. I think these are called sash windows. Anyway, we love the house and try to keep it in the original style. We are lucky that the previous owners did so. Anyway, in a couple of places, the rope broke, so the weight detaches and you don't get that smooth action you had before. I have purchased some sash rope and tried to read online about how to do this repair. However, when I approached the job, I realized I still don't have enough knowledge to do it. From previous work on the house I know that things often explain themselves once you get into them. But that often means that, after you realize how to do it right, but you spend lots and lots of time coping with the aftermath of the fact that you did it wrong.

So I went in the back yard and used my reciprocating saw to bevel off one of the outer pieces of the patio framing which had rotted and was sticking up to offer a trip hazard. Then I cut up a bunch of thick tree branches I had previously trimmed. That's called compensating behavior. Fine. I just need to do more research on these windows.

But about a year ago when this problem first came up (you can see, we've been busy!) ... I went to the local home repair supply mega-store and started to explain my problem. The guy nodded knowingly and informed me that the weight had dropped down inside the house and I could replace the entire window with a new vinyl one, and it would have these nice modern twirly devices to open it. When I said I was just looking for rope to repair my window he looked at me like I was an idiot and repeated that the weight had dropped down inside the frame of the house.

Well guess what, they don't design things that way. The weight is snug right beside the window, at about the top of the sill. Because, naturally, there is a stop for it.

Aside from his desire to sell product, this interaction seems to illustrate the First Accepted Explanation principle, practiced principally among dumb people, principally guy people. What you do, in a bizarre and confusing world where you are just trying to fit into the primate hierarchy, is accept the first plausible explanation that comes along, and stick with it. The level of perceived plausibility depends of course on what resources you possess. This approach may have its drawbacks but it will give you a quick and easy response to a broad range of issues.

The cramp in my left calf is almost gone, but I still feel the shadow of it, and it warns me not to attempt too much on that leg. I really do not want to injure myself. Disability begets disability.

My son is in a proto-reading state. I wrote "Put your shoes on" on a piece of paper and showed it to him, and he quickly read it as "Pat your shoes on." I prompted him to decide what the first word should be, given that the others are "...your shoes on." He decided that it must be "Put." Key-reckt! We need to get him some proto-reading challenges at preschool. But I don't know what the best materials or approaches might be.

A friend lent me a couple of CDs.

Last evening I called and left a message for Patrick's parents, suggesting a playdate, but they have not yet called back.

Wednesday, April 21, 2004

Rapid screening test for ALS

My friend John hipped me to the effort to create this test, while it was under way. And then Anna (who...) sent me this URL which shows that apparently neurologists will shortly have a reliable test for rapid diagnosis of ALS.

Anna (who...) also provides a yummy note.

My hope is that the markers on which the reliable test is based will start somebody to thinking about how those markers got to be that way in the first place. I persist in my belief that ALS is caused by unclean thoughts.

My boy knows how to read some words, short ones generally. Recently his grandfather and he worked up this sort of poem thing that is about 25 words long. They emailed it to me. This issue fell dead for 9 days, and yesterday I printed out the poem. My son was able to "read" it perfectly. I assume he has memorized it, but it seems to me that he is using the printed text to remind him what the next word is (by looking at the letter it starts with). So I covered up the text and exposed a word to him and he read it, then did that and again and he read it. The words were "merry-go-round" and "town." He's also good at sounding out words. He may not be reading, but he is on his way.

Meanwhile he has been acting up at preschool for a couple of months now. Not severely, but, as the teacher says, 'testing.' He'll spin during circle time, or turn his back. He does it to get attention, and to test the rules, but also, I think, because he is somewhat bored. It's a good preschool and we are going to ask the teacher to challenge him more. More alarmingly, he has launched a campaign against "bad" Patrick. He used to convince other kids to trap Patrick, which meant cornering him and trying to restrain him. Patrick, to his credit, protests, runs away, and won't tolerate it. One of the moms is thinking of taking her son out of the preschool, and I think it is because our son has been convincing her son to help trap Patrick. So the actual trapping behavior has died down thanks to the teacher taking away our son's recess time if he tries to trap Patrick. Then Monday she overheard him saying he would throw bark in Patrick's eyes. Once again he lost his recess. The teacher said he was stomping mad. I am glad she takes a tough line with him.

The odd thing is that she say that sometimes Patrick and my son play together like friends. And I have met Patrick and he seems like a gentle, intelligent, kind kid. I think that if given a chance, they will be friends. We are going to arrange a playdate with Patrick and his parents, and the boy that my son has been turning into an anti-Patrick goon. It turns out that they all three share the same ethnic background (in whole or in part), and there are some words that Patrick can teach my son and the acolyte goon. Also, I want to have the playdate someplace extra-special from a four-year-old viewpoint, and have an extra-special treat for the three of them. That way, when they next meet on the playground, they will have something to talk about: "Those cupcakes were yummy, huh?"

I guess the lesson I hope to impart is that supposed enemies can become friends. This could be a really formative lesson for my son. Actually seeing someone in the "bad" camp transformed into a member of the "good" camp.

Blasted are the peace makers.

Tuesday, April 20, 2004


I went for a very light jog yesterday and three or four blocks from here my left calf got a cramp in it. It felt like right after you have an inoculation. Not painful in any extreme way, just a knot. So I stopped running, did some stretches, and spent the rest of my evening limping around. That was bad for morale. I can't figure out why it happened, as my exercise has been light since returning from Hawaii.

The process of converting the analog videos to digital is going well. I am approaching half done. Once I am done I will want to get rid of the analog video camera. What do you folks think I should do with it? I have this notion of sending it to a school or a reporter in Iraq or Afghanistan. But then I worry that some authority along the way will confiscate it for personal gain. Or that it would be used for illicit purposes. I don't know. But I would like to get rid of it. And I would like a feel-good feeling of dumping it on some unsuspecting person in the world beyond the normal range of our profusion.

In other news, it looks like B.D. has been hit. He's just a cartoon character but I got a tear in my eye.

Anyway, the cramp is better this morning. Not all gone but better.

Not Today, Baby!

Monday, April 19, 2004


This lady soldier in Iraq is good read.

I choked something awful last night while eating, talking and drinking at the same time. Two separate conversations, one admonishing my son and the other talking to guests. I did this once in Hawaii in the same circumstances. My wife noticed the pattern and pointed it out to me. "I want you to stop joking," she said, lovingly. Joking is part of who I am, I thought, but I can try... "What?" I said. "I want you to stop joking." "Stop joking?" "No, stop choking." I must have mis-heard her. It was late. She takes good care of me.

I got the volumetric breathing thing up past 5000 mL, which is the highest value it records.

My son is in preschool today. Did a little nailing in the garage. Mostly I use the pneumatic nailer, but I do quite a bit of by-hand hammering as well. For example, when my son wants to come down in the garage, sit on a paint bucket, and watch. He hands me nails when I need them. But I was also hammering just now. The other day when I was hammering I noticed that my right hand got a little strained. So I called it quits. Again today the right hand sort of gave pre-warning signals. I quit. And a sad thought hit me, that some day I may no longer be able to swing a hammer and drive a nail. It's a guy thing. But still, the hammer is perhaps the first human tool (think rock in fist). Frankly, I don't know how anyone is able to squint at a tiny nail head, swing a hammer from two feet out, and hit the head true enough to drive the nail in. But I like to be among those people. A righteous song came on the iPod then, Chumbawumba I think it is, the one where he says "I get knocked down, but I get up again, you're never gonna keep me down!" I like the spirit. I like it a lot. It inspires me, the youthful bravado. But try getting up again when your motor nerve cells are all dead.

Plenty of sawdust on the garage floor today.

I consider this one of those internet hoaxes. But Wired magazine seems to think it isn't. It soooo close to real that you have to think twice, but the clues are there.

I seem to have better fortunes playing black. It sure does help that there are people on the net who are truly awful, like this guy:

guest842 vs. guest289 --- 2004.04.19 14:08:37
Unrated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move guest842 guest289
---- ---------------- ----------------
1. e4 (0:03) e5 (0:01)
2. a3 (0:02) d5 (0:19)
3. d3 (0:08) dxe4 (0:03)
4. Nf3 (0:13) exd3 (0:02)
5. Nxe5 (0:10) Qe7 (0:17)
6. f4 (0:14) f6 (0:02)
7. Bxd3 (0:16) fxe5 (0:05)
8. Bb5+ (0:08) Bd7 (0:18)
9. Bxd7+ (0:12) Nxd7 (0:02)
10. Bd2 (0:13) O-O-O (0:03)
11. Bb4 (0:10) Qe6 (0:12)
12. Nc3 (0:15) exf4+ (0:04)
13. Ne2 (0:16) Bxb4+ (0:03)
14. axb4 (0:10) Ngf6 (0:17)
15. Qd4 (0:14) Qb6 (0:21)
16. O-O-O (0:17) Qxd4 (0:08)
17. Nxd4 (0:08) Nb6 (0:29)
18. Ne6 (0:22) Rxd1+ (0:05)
19. Rxd1 (0:13) Re8 (0:21)
20. Nxg7 (0:06) Rg8 (0:01)
21. Ne6 (0:23) Rxg2 (0:03)
22. Nxf4 (0:06) Rxh2 (0:03)
23. Re1 (0:09) Nbd7 (0:18)
24. b3 (0:16) c6 (0:01)
25. Re6 (0:09) Nd5 (0:08)
26. Re8+ (0:15) Kc7 (0:06)
27. Ra8 (0:34) Nxf4 (0:11)
28. Rxa7 (0:06) Ne2+ (0:41)
29. Kb2 (0:03) h5 (0:09)
30. Ka3 (0:09) h4 (0:12)
31. c4 (0:11) Nd4 (0:17)
32. Ka4 (0:21) Ra2# (0:13)
{White checkmated} 0-1

Sunday, April 18, 2004


We rented a pretty decent comedy called "Window to Paris." A group of Russian in 1993 discover a window that is some quantum portal that transports them to Paris and back. Hijinks ensue.

I have a couple of times forgotten to take the riluzole, once until 5:22 in the afternoon. So I have decided to always take it upon waking up, even if I eat breakfast within an hour. Ritual is your friend.

Some very nice people have organized a dinner brigade and have been bringing us dinners once a week! I think the group is large enough that it works out to once every two months for them. This is so generous.

I love my son so much. And I hate my role as a warden. But a major part of his mission right now is to find rules and break them. And I don't mean rules like which fork you eat with. I mean like not grabbing the hand of our neighbor who comes over for a visit, and jumping up and down laughing while milk spurts out of your mouth. OK, maybe that was just over excitement rather than deliberate rule-breaking. But a lot of the rest of the time his quest is to find something you feel compelled to correct him on ("Don't tip that! It'll break!") ... and then once you have offered the constraint it's like you took the bait and are now on the hook, for he has a number of options, which include ignoring you, defying you, joking about the transgression, and others. Then you are correcting him for ignoring you on something important or dangerous (and whatever that is, he's still doing it while you give the lecture on ignoring you), and the whole thing escalates from there. This is what the parenting books call the power struggle. He wants to force you to be the warden so that he can feel the sense of empowerment that comes from defiance. It's normal. It's natural. But I don't get to be with him when the warden is with him, and I miss him. Desperately.

The other day at a birthday party he did a smart thing. They had a bubble machine which blew soap bubbles automatically. They also had twirly things on sticks, that twirled in the wind. The kids were chasing the bubbles around and popping them by hand. My son too. Then later, he picked up one of the twirly things and held it in front of the bubble machine. The air coming out made the thing twirl, and the twirling bit chopped up all the bubbles. I thought that was inventive. A small girl came over and told him to stop. I let them work that one out between themselves.

Friday, April 16, 2004

Internet radio

Here's that Science Friday broadcast I was trying to listen to while videotaping the teenagers getting arrested:

I just today bought a pair of speakers at Radio Shack, for less than $20, and I am listening to the piece now. Actually, I won't be able to finish right now because I have to go pick up my son.

Thursday, April 15, 2004


This morning I have been ripping down some drywall in the garage, and have started clearing the junk away from the part of the wall I exposed before the baby was born. I am going to put up a piece of sheerwall there. This makes me feel good. Even better will be the feeling when we actually get to use this space. Do you think I should switch to a Dvorak keyboard?

There is a woman who I have seen walking through our neighborhood, with long hair, and she walks slowly, at the exact same pace every time, back straight, arms at her sides. It's not a casual amble, I think, I looks like she is pushing with everything she has. And yet she walks so slowly and the limbs move in such short ranges. She makes headway, it seems to me, like a battleship. I wonder. I wonder if she has ALS or some other form of neuro-muscular disease. I haven't talked to her yet.

Wednesday, April 14, 2004

Jean-Luc Picard

I finished nailing up the 4'x8' that I put up on the ceiling in the garage. I can see the end of the project coming, not any time soon, but I see it. I just need to rip down some more drywall, put in some more foundation bolts, install the sheerwall, and then have someone drywall it.

While I was nailing, I also repaired the small holes (apparently created after years of dry rot, by animals, for animal access) at the bottom of our garage door, and trimmed the kiwi vine in the back yard. While trimming, I broke a light bulb on an outdoor lamp that doesn't work anyway. But I'm going out there to remove it because I don't want glass falling onto the picnic table when the wind blows.

And hurray, this is the week when I didn't have to go to the store to buy more Ineffective Supplements. I don't go to the expensive and rather nosy GNC anymore because I have found that I can get everything at the local supermarket and/or drug store. Cheaper. With less nosiness.

I woke up at 5:22 to a bright sunny afternoon, thought it was tomrrow, checked my watch, which told me the truth, still thought it was tomorrow. Felt awful. Coped for a while. Got my boy some juice. Moved the sprinkler. Went for a walk around the block, listening to the iPod, Lords of Acid and a light sprint finally woke me up, listened to the Replacements then:

Well give your ID card to the border guard.
Now your alias says that you're
Jean-Luc Picard
of the United Federation of Planets,
'cause he won't speak English anyway.

Everybody knows
that the world is full of stupid people,
so meet me at the mission at midnight,
we'll divvy a beer.

Well I got the pistol,
so I'll keep the pesos.
Yeah, that seems fair...


Tuesday, April 13, 2004


Far from brilliant, but fun. I played black:

Unrated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move guest1166 guest2097
---- ---------------- ----------------
1. e4 (0:03) e5 (0:00)
2. Nf3 (0:03) d6 (0:00)
3. d4 (0:03) Qe7 (0:02)
4. dxe5 (0:21) dxe5 (0:02)
5. Nc3 (0:10) Bg4 (0:05)
6. Be2 (0:04) Nf6 (0:13)
7. h3 (0:12) Bh5 (0:02)
8. Qd3 (0:22) Nc6 (0:15)
9. a3 (0:07) Bxf3 (0:04)
10. Bxf3 (0:04) Nd4 (0:01)
11. Bg5 (0:11) O-O-O (0:01)
12. O-O-O (0:07) Nb3+ (0:07)
{White resigns} 0-1

White didn't even need to resign, as he (she? it?) would have been only one point behind. True, there would be an untidy pawn structure, but no insurmountables. Here's one while listening to the acting president give his press conference. I was black:

Unrated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move guest1350 guest1435
---- ---------------- ----------------
1. e4 (0:02) e5 (0:01)
2. Nf3 (0:03) d6 (0:01)
3. d4 (0:04) Qe7 (0:02)
4. dxe5 (0:03) dxe5 (0:01)
5. Bc4 (0:02) Bg4 (0:02)
6. O-O (0:02) Nd7 (0:10)
7. Bg5 (0:03) f6 (0:03)
8. Bh4 (0:03) O-O-O (0:02)
9. Nc3 (0:15) Nb6 (0:02)
10. Qe2 (0:12) Bxf3 (0:04)
11. gxf3 (0:02) Nxc4 (0:03)
12. Qxc4 (0:01) Qc5 (0:26)
13. Qa4 (0:04) a6 (0:10)
14. a3 (0:06) Ne7 (0:09)
15. Nd5 (0:05) Nxd5 (0:13)
16. exd5 (0:01) Qxd5 (0:01)
17. c4 (0:06) Qxf3 (0:10)
18. b4 (0:08) Qg4+ (0:28)
19. Bg3 (0:02) h5 (0:02)
20. b5 (0:11) h4 (0:02)
21. bxa6 (0:03) b6 (0:09)
22. a7 (0:04) Kb7 (0:01)
23. Rab1 (0:06) hxg3 (0:03)
24. fxg3 (0:07) Bc5+ (0:25)
25. Kh1 (0:04) Qe4+ (0:08)
{White resigns} 0-1
Poor use of the web

No, not the blog!

The poor use of the web to which I refer has to do with rebates. See, the super-eco-friendly washer I selected comes with $200 in rebates. The one from the electric company is $125 and the form says about a dozen times that the rebate program is subject to funds availability. Which probably means that the state legislature created the program, to make themselves look good, and funded it to the tune of, oh, say $250 -- in case anybody decided to use it. Which means the money is all gone now. That's what you would think if you were cynical. But the poor use of the web to which I refer arises in the water utility rebate. There are a lot of boxes to fill out and a receipt and a bill to attach on that form, but I noticed a little section inviting you to connect to the web site and register online for your rebate. Cool, I thought, I will save a stamp and I won't have to mail in the receipt and bill, but I wonder how the decide to trust me over the web? Nonetheless, I went to the page and filled out all the many boxes there (lots of them), and at the very end, after I had submitted the form, the Thank You page said I would receive a letter ... inviting me to mail in the receipt and bill! So in this case the web serves to waste my time, their time, create an additional mailing, and delay their receipt of my application! These are the same caliber of people who are currently fighting the war against terrorism. I just hope that the terrorists are equally adept.

I am doing a little pneumatic nailing the garage right now. My wife found somewhere a hint of a suspicion of a rumor that there may be some unproven correlation between use of pneumatic tools and ALS. And, while I have abandoned various things under the doctrine of Change Is Good, I will not abandon my pneumatic hammer. It's a guy thing.

By the way, Happy Three-month Diagnosis anniversary!!! This is exactly where I wanted to be at three months out and exactly where I want to be a year from now (unless my symptoms go away) I have this personal mythology now that the progression has stopped completely. We Shall See.

Monday, April 12, 2004


OK, so the new washing machine is here. It’s a front-loader. It’s super-efficient in its use of energy and water. I am doing the first load now. The front-loader architecture concerns me a little because I see that it relies on a large, floppy rubbery seal to keep the water from spilling out. If you were cynical you would expect that seal to degrade in a few years and need to be replaced. I thought the capacity of the new washer was slightly smaller than the massive one we had. But the guy who delivered it pointed out that is has no agitator (the post in the middle of the tub). So that adds space, and it seemed to hold just as much laundry as the old machine when I started my test load. The new washer is quiet, but all new devices are quiet. I expect my fancy new computer to start groaning soon enough. The network issue is resolved: I just had to set up a user on the other machines that had the same credentials as the user I was logged in on at this machine. Usually on networks you can see the other computer, but not log onto it if you do not have an account. I can't even see what I ain't getting. That's probably a security enhancement. But I don't like it. But now that the issue is resolved I should be able to resume my networked game programming project. In my free time! Haw haw haw. Oh, this morning I also replaced the screen on the window to my boy’s bedroom. He had knocked it out somehow. I got up on the ladder and took things slowly and carefully. My policy was: If It Falls, It Falls -- Don’t Try To Catch It.

The weather is still perfect as usual. The stretching of my left ankle really seems to be helping. This morning I drew it up tight and even popped it. I love that little popping sound you can get from ankles (if you are over 30).

I had a moment of confidence the other day while weeding with my son on the front lawn. It just seems to me that since I am going to hit my 3-month diagnosis anniversary soon with no apparent degradation, and with my breathing score actually improved, that I will still be able to walk and take care of myself 5 years from now. My goal is 10 years. It’s just a faith I have. I can’t prove it except by doing it. And by staying out of the way of that speeding ambulance carrying Michael Jackson....

Oh yeah, and the twitching in my left hand seems to have almost entirely gone away. I think it was the after-effect of me setting that record by squeezing the Grip Builder 49 times. So, the idea that my body can recover from an abuse like that despite ALS is an encouraging one. Along those lines though, I am starting to doubt the wisdom of using the 100-yard dash as a metric. Just because I could injure my muscles.

Saturday, April 10, 2004


They gave me this funny little plastic toy to practice breathing with. I remember Janet showing me hers when I visited her shortly before she died. She didn't like it and it annoyed her. It's so low-tech. Americans would expect it to automatically record your personal best. It doesn't, you have to do that by moving a little plastic tab to mark your spot. It goes up to 5000 mL, and the best I have done so far is 4900. The respiratory therapist said I should be able to hit 4000 reliably. I can.

My son and I went to Sears and ordered a new, energy- and water-efficient washing machine this morning. The old one wasn't getting the clothes clean, and it leaked water into the tub. So we had to run the dryer more. The new one will be delivered Monday. I am expecting to see my utility bills go down.

Friday, April 09, 2004


I was like a donkey caught between two piles of hay. I was hungry when I finished my last blog entry today, and I heard a voice shouting "Police! Stop! Get Down!" There have been several break-ins across the street due to a mother having no control over her drug-dealer son. Now he is away for an extended period, and the neighborhood is keeping an eye on her house. She works during the day, and there is no husband, and the kid's friends know that. Prior to his going away, they'd been in his house many, many times. It was an all-day party each school day. People would come and go, like at a fair. While we were in Hawaii, two teenagers were arrested for breaking into her house and stealing a computer CPU. They were caught with it in their hands. And the drug-dealing son has been gone since before Hawaii. So today, apparently five teenagers pulled up with the radio blaring and went into her yard or house. A neighbor called the police (I wish it had been me, but I didn't see them go over there). The cops came and started shouting, and I started catching it all on videotape, including the arrest of two of the miscreants. The other three got away by hopping fences. While all this was happening I turned on the radio and Science Friday with Ira Flato was devoting the hour to ... ALS! So while I was videotaping the police action (particularly seeking to get a shot of the faces of the young men), the soundtrack on the video is people talking about stems cells and gene therapy. Weird.

Their red car (which I presume is someone's mommy's car), is still parked in front of our house. I took pictures of it and the license plate.

My son got in trouble for smearing yellow finger paint all over the wall. Then he was rascally and I finally got him settled into his nap.

And while I was writing this entry, Mama pulled up alongside the red car, in her black (Saab?). I caught a glimpse of pale, puffy white flesh, privilege, and 50ish self-importance. By the time I had rushed out the door with my camcorder, she was already down the other end of the street, turning. I might have tried to get that shot, for the license plate, but I wanted to get the face of the teenage boy (another son, I presume), who she had dropped off. So I filmed him. He was in no hurry, and smirked for the camera, then drove away.

Then I was on duty to watch my daughter while her mom had lunch. We went for a little walk in which she pulled the petals off of the state flower. I encouraged her not to pick, but to smell. I smelled some, to show her. After that she pulled the petals off and sniffed them. All good things in all good time.

From the Saab Mama's perspectives, it goes like this: Peer pressure got the best of Paul and Robert today: They let one of their friends drive the Grand Am. I had explicitly told them, when we got them that car, that they were to be the only drivers, and they were to go to and from school, only. But the friend drove them over to a friend's house, who wasn't there. They were standing around on the lawn when the police showed up and arrested them! Apparently there had been some break-ins at that house that we didn't know about, and the whole neighborhood was on high alert. The other boys ran away, and weren't arrested. But not my boys: When a police officer talks to them, they do what they're told. How ironic. My husband is a very prominent lawyer and we have friends in the police department, who explained all the wild confusion to us. It's going to sort itself out, although I am going to hold the boys to some very strict rules about using that car. But the thing that really bothers me is the way one of the neighbors came running out of his house, like this was 'America's Most Warranted,' and started filming my son Ethan as he picked up the Grand Am! Like we were criminals! I saw it in my rear-view mirror. Some people just need to get a little less excited. Honestly!

From my perspective, it goes like this: Your sons wanted to smoke some righteous weed and maybe steal some stuff, and they recruited three other guys to go with them. They drove over to the house where they had stolen the mom's jewelry last year, because they knew she wouldn't be home (since she was at work), and plus, they'd gotten that email from her son saying his mom was his enemy now. They were too stupid to know that the house has a new alarm system, and they went around back to smoke a spleef and maybe look for a way to break in. A neighbor called the cops and your sons were too slow and weak to escape. More likely, they were the ones inside the house when the fuzz showed up. You show up to reclaim the car, and you're such a coward that you quickly drop off the boy driver, and speed away, as quick as you can.

We have a government program around here where you can send in the license plate of a smoking vehicle, and they get a notice in the mail of where and when you saw them. The Grand Am was not smoking, but I think I may turn it in as if it was, with the exact street address of where the boys were arrested.

Over on the other side of the world, some much less trivial battles are being fought. Check out the blog from a woman soldier:

"The attack resumed at one AM with RPGs and machine guns opening up on us from across the other bank of the river. We kept calling to Higher for Air Support, for Evac, for reinforcements. They’d say, “Sure, they’re on their way…” Twenty minutes later, we’d find out--not be told---that in fact they weren’t. This happened about eight times. During the time they weren’t reinforcing us, the enemy mined the bridge that’s the sole way out of there with IEDs. Then Higher ordered us to Evac our way across that bridge. It was explained to them over and over that the bridge was mined. They’d listen, then issue the order again."

Yesterday the new driver’s-side mirror for my car arrived, and I put it on in about 15 minutes. It helps that I had done the passenger side one several years ago.

This morning I went to see my general practitioner about my perceived cardiac arrhythmia, and to make sure I am first in line for the autumn flu shot, and about my grumbly tummy. They are going to put me on a 24-hour harness to monitor my heart. I’ll be free to wander around but I will have electrodes on me. This arrhythmia is something I have noticed since I was an adolescent. It’s a bit scary but very infrequent. The grumbly tummy has been feeling yucky and full in the late afternoon, some days, and not some other days. It interferes with my appetite. I have a pal who experiences his pollen allergies as a painful stomach. But this is not pain. I already tried Mylanta. The ginger ale at 12:40 AM seemed to help (after a while). I think I may just be fighting a bug. [yucky bit] But it is also possible that I am generating more saliva than I should, and swallowing it without thinking about it, and filling my stomach. I think I remember reading somewhere that it can be a problem for people with ALS. But when I looked in the index of the Munsat book, “Saliva” is not even indexed! I got some GasX on advice of the doctor and took one for the heck of it. But since I wasn’t feeling the queaze at the time, I don’t know what it might do. This morning my stomach did not want to eat the raisin-bread toast.[/yucky bit] Or it could be all psychosomatic. Had headaches yesterday, too. And last night. Usually in ALS that is a sign of poor breathing. But we saw on the 5th what an awesome heavy breather I am. So it can’t be that.

I went to the gym this morning with the wife and kids. We lifted weights while they played in the kinderstalag. Actually she and they are still there. I completed a full set with generally 20 pounds less than usual, and fewer reps. Then I jogged back in the pleasant sunshine and cool air. Had a little snack just now.

I am experiencing frustration trying to capture my analog video into the computer. I am using the digital camcorder as a bridge between the analog and the computer. So far I am able to get exactly three frames from the analog machine (and by the way, they do look fuzzy, not nearly as harp as digital), and then the computer starts sucking from the digital camcorder. Oh, well.

While in Honolulu, I read Theodore H. White’s In Search of History: a Personal Adventure. White became a big-time journalist who wrote for Time magazine when Time was the CNN and Fox of it’s day. The story is most gripping in the beginning when he sets out for China and gets swept up in WWII. By the end of the war he is a big shot and goes off to Europe. He takes some hits for being perceived as a Lefty in the McCarthy era. After that the book is still worth reading, but it’s less compelling. He obviously had to have some kind of personality that made powerful people, both story subjects and media magnates, trust him. He gushes from time to time that some powerful person asked him for advice, which, in a post-Watergate era, I find annoying. And he constantly does this glib, pat, Time-magazine type summation of things. He boils everything down with an unassailable verdict. But the verdict always contains a duality. Let me make one up: “The people saw Leader X as a liberty lover, as fervently as America saw him as a dictator. Both were right.” The glib summaries were frustrating, but I read the book for the details and the stories. I am not sure whether to recommend it to you, dear reader, but I like it so much that I am buying a copy.

Then I picked up a copy of Guns, Germs, and Steel the Fates of Human Society belonging to Ronolulu’s lovely wife. This one is really cleanly and clearly argued. It’ so sharp. It won the Pulitzer. I can see why. The author makes plain to you what he is saying, why it matters, considers the alternative, and then examines the evidence. When we got back, my wife checked it out of the library for me. I am three quarters of the way through it. I recommend it to you, dear reader.

I don't have a library card because they make you show a driver's license to get one. Am I crazy? I understand the problem of lost property, but I also think that what you read in the library should be private. I fear Big Brother. Similarly, I went to buy some expensive Co-Q10 in the supermarket, and they had a 2-for-1 deal, so I went to fill out one of those club cards using a fake name (I had left my usual card with a fake name at home). I noticed that the form had a box saying that you are allowed to get the card without providing any information. I decided to give them a fake name anyway, but the lady just gave me a card, waved off the form and told me to fill it out whenever I chose to. I think they are starting to realize that 80% of people give fake info and the other 20% change addresses frequently. As my friend Storm points out, they'd just like to have a consumer profile. Which is why I think the idea of trading cards with people every time you cross paths is such a good one. And lastly, when I was at the doctor's office today they gave me a form to sign "for your privacy." A lot of these forms are coming at me these days, because the law recently changed to reduce your privacy rights, and the various companies want to get your signature acknowledging to it. However, this particular form has an option wherein I don't have to sign, and they aren't allowed to deny me service. The lady behind the counter said that if I did not sign, they would need to get my consent before sharing my information. She made that sounds like a bad thing. I didn't sign. Maybe the law says I don't have to. I should find out more about that law. I won't.

I have been enjoying pruning the trees in the back yard in the past few days.

Thursday, April 08, 2004


Also, there seems to be this bias against running. Several of the people I've talked to have gently suggested swimming or cycling because running is so "jarring." That may be the case for many people, but I don't find it jarring, because I am light and I have lots of experience running. It may be the thing that keeps my bones strong. It may be the thing that keeps me from declining. I'll stick with it. I felt so good running (moderately) yesterday, both spiritually and physically. I wish I could run today. But today is supposed to be a gym day, my first since getting back from Hawaii, so I really think I should stick with that. And yeah, I could run to the gym, but I think I'll walk.

They also told me not to run up and down stairs. Once again, great advice for other people. But running up stairs is part of who I am. You might as well ask Bill Clinton not to ... uh, well. Anyway.

Wednesday, April 07, 2004


Not all was well and rosy Monday. They did note that my left ankle was getting a bit stiff, and told me to do some stretches. And several of the left-side joints were adjudged to be 4s rather than 5s. The rating of 3 is so feeble, though, that you need to stay in 4 territory or you have serious problems. This is an instance of a scale being too coarse. But, they have granularized it by using designations such as 4+ and 4-. So really, the scale has almost 15 slots.

I may have blogged this already, but the owie I get on my left big toe when running is not due to poor sock deployment, but rather, I am sure, due to the toe muscles or tendons (or what have you) being too relaxed. I have been consciously trying to grip in that toe when I run, to try train it to be. Maybe that, plus my ankle stretches, will reconstruct me.

The 'phrase binking' is actually 'phrase banking.' The intern to the speech therapist was going on and on about 'phrase binking' and when I repeated 'phrase binking' to her she kept going on and on, and when I asked her what 'phrase binking' was she explained it more. Finally, I said, "Oh, phrase banking!" Yeah, she said.

The idea is to store up .wav files of yourself saying things, so that later, if you need a speech device (yes, like Stephan Hawking), the machine can say lots of things in your voice. They gave me a list of suggested phrases. One is "Please let me complete my messages without trying to guess what I will say." That seems all too useful already. Another notable one: "Sometimes I get a little teary. I'm fine. Go on."

You can make up your own phrases too. Imagine Bill Clinton's phrase bank.

Tuesday, April 06, 2004

Jerry's Kids

By the way, the whole ALS clinic experience is pretty swank. The first time we went there we didn't ask about validating parking, and we paid a pretty penny. This time we did ask, and got the stickers, and the total parking fee was: zero! I don't know who picks up the tab for the parking, but you can see that the clinic really wants to make people feel comfortable by removing petty obstacles and annoyances. Part of the sense of swank and support comes from the MDA (Muscular Distrophy Association), which also helps people with ALS. One of their people talked to us. The MDA is famous for the Jerry Lewis telethons. They also have a lot of support that they can give to ALS patients. Examples include recycled chair lifts for less than a thousand dollars (devices which move a person up a flight of stairs) when normally these would be closer to $10,000, as well as -- get this -- sanity grants to provide a temporary caregiver while the primary caregiver (read: spouse) gets away for a while.

I noticed that the clinic people gently and subtly assessed my wife while we were there, kind of the way you would look at a used car. They want to know if she will handle potholes well.

I am grateful for their help, and for my wife's help, but what they don't know is that I plan on still being able to take care of myself five years from now.

The nutritionist pointed out an interesting but not revolutionary study regarding hypermetabolism in patients with ALS. It seems to be an effect rather than a cause. And unfortunately the study does not show up in my list of 500 PubMed abstracts.

The thing that is in short supply right now is time. We have two kids. I am supposed to do stretches, get exercise, sort my pills, arrange for bloodwork results to be faxed again since they lost the first fax, learn about 'phrase binking' (more on that later), do some other stuff I am not blogging about (yet) ... and that's all before even thinking about the cool stuff I actually want to do, the writing, reporting, programming, etc. I guess if you are single you don't know what I am talking about.

By the way, I often catch myself saying "single" when I mean "childless." In my mind it really is the same thing. I respect the marriages of people who do not have kids, which are just as serious and real as those of people with kids, but in terms of stress and work levels, people without kids are "single" in my mind. Unfair? I dunno. I have to make a phone call now.

Monday, April 05, 2004


My wife and I spent the day at the ALS clinic, a regular offering they have, where they have a bunch of specialists come in and look at you. They weighed me at 136.9 pounds with my shoes off and my pockets empty, but jeans and shirt still on. They told me I was down a pound from last time. I was at 137 while wearing a paper gown Jan 23, so that sounds about right. I credit that to no longer using the Protein 95 mix I had been using, and from the long, arduous Hawaii trip.

The most important measurement they have of your condition is the Forced Vital Capacity. That means how big a breath you can take and then exhale. The last time I was at the clinic I scored 94 percent three times in a row. That’s a percentage of expected capacity for someone my age, weight and height. As you know, I had been practicing for the rematch. However, when I was tested today, I think I psyched myself out. I scored 90, 83, 80, and 89 percent . The technician testing me told me there is a lot of wiggle room in the results, due to the equipment, and not to concern myself. Keep this in mind for later. So then we saw a nutritionist, doctor, occupational therapist, physical therapist, clinical trial administrator ... and respiratory therapist. She re-tested my FVC. At first I flubbed it by smiling and laughing a bit. It is hard to be serious when you have this plastic tube in your mouth and people are yelling “Blow! Blow!” I begged her to stop cheerleading, and asked my wife to step outside the room, because she makes me laugh too. Then I was measured at 101, 94, and 97 percent. I suppose that averages to 97.3 percent. But I like the 101 percent score best.

Also she did a negative pressure test, in which you suck hard. I think the measurement is in centimeters of mercury. I scored 115, 100, 110, and 115. She said these were very good scores. So I really, really suck. Then she tested my cough flow rate (take a big breath and cough once, really hard). I scored 650, 600, and 700. “I haven’t seen anybody’s cough rate that high for a long time.”

Several of the people I talked to were very concerned that I sometimes run five miles or more. To them this seemed extremely risky, and they begged me to tone it down. To the ordinary American, or to a jiggly tub of milkshakes and martinis like Thrill, five miles would be possible only because for the last 4.1 miles they’d be riding in an ambulance to the emergency room. But to someone who is used to running, like myself, five miles, when taken moderately, is like walking.

At some point the technician who had taken my FVC earlier in the visit came in and saw the new, higher scores. He’s quite a joker but he said that he would be in trouble because he had mismeasured me. I said not to worry, I had been psyched out and flubbed the test. “No, but it’s my job to test you correctly,” he said. “I will be in big trouble.” That bit about being in trouble was his joke. But you will notice that he no longer was saying that the drop from 94 to 89 was an instrumental variation. Now the difference was big enough for him to joke that he would get in trouble.

I wound up with a big bag of free samples of stuff that heretofore I associated with dying people: Ensure, Boost and other dietary supplements. Plus a calorie bomb from Nestle. I think I will try them all. In fact, a moment ago, I just had my first Ensure ever. I always associate Ensure with my dear friend Janet who died of cancer. So after I quaffed the beverage, I was sad for a moment that I had not toasted her. Then I realized that in her heaven right now, Janet is young and dancing with soldiers. The year is 1944 and Ensure has not been marketed yet. So she wouldn’t understand. Here’s to you, Janet.
Drool bucket

Today I go to the ALS clinic for what they call a workshop. That means a bunch of people look at me and give me advice. But to me the main thing is that no one is going to poke me with needles.

And yes, now that you mention it, I have noticed problems with saliva management. I usually come to a half-waking state a couple of nights a week, noticing a wee bit o' drool comin' out me lips. I do a discrete wipe and flip over and that is that. It's the sort of thing that happens to everyone I suppose, and me, from time to time, before I had ALS. But now I notice it happening more often. Saliva management problems are an ALS thing. It's in the 'bulbar' control set, which, according to the So You're Going To Die transcript, (and the reading I have done) is indicative of things going to hell more quickly.

Basically I feel that the jury is still out on whether I will be here 10 years from now or turn into a pile of go within four. We Shall See.

Sunday, April 04, 2004

Ps and Qs page

I made a new page to track my Ps-and-Qs questions.

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.

Saturday, April 03, 2004


I caved in an ordered some books I had seen at Ronolulu's house (and related books), and opera CDs. I broke my vow to finish the stack of books on my desk before ordering more.

There is going to have to be a purge.

Friday, April 02, 2004


The weather is still perfect here. The orange tree creates a wonderful scent that pervades the yard. We spent some time back there today. Under the buckeye tree there is another scent, also pleasant. We have oranges (currently ripe), plums, and apples (not until Fall). I am thinking of planting an apricot where the stump of the old redwood is. Or maybe an apricot and a nectarine. Do they have dwarf varieties of these trees?

So good back there. Sigh!

The guy who smashed the mirror off of my car paid me the $67 just a few minutes ago.

My son is napping. The toddler girl seems happy. My wife had yet another hard night last night due to a combination of the girl waking, and herself not being able to get back to sleep. But she took a 1.5 hour nap this morning and that seemed to help.

I am thinking of making a sort of flowchart for haggling with a four-year-old, to show the various stratagems and their likely outcomes. For example, today at nap time he protested, then went limp and I had to carry him up the stairs. He said "but I'm not tired, and I'm never tired." He fell right to sleep when I put him in bed. And today was easy, sometimes he puts up a ferocious fight. As a parent you are trying to work towards some kind of consistent pattern, expectations, rules, customs, so that you don't have to fight every battle with all your wits every day. You might think it would be smart to remind him, after he wakes up, "You said you were not tired, but you fell right to sleep, just like always." You might think that would be smart, because then he would come to agree with you that he is tired at nap time. But it would be almost the worst thing you could say. Because tomorrow he would make a point of not falling asleep, even if he is tired, just to prove his independence. That's what kids want at this age, a sense of independance, of personal gravitas, to feel that they matter and have to be taken seriously. Now, those of you without kids might think that the answer is easy: Just give them love, appropriate praise, involve them in decisions, show them ways that they can help, and presto, no arguments! Wrong. What happens when you raise 3- and 4-year-olds in a loving way is that you get twice as much arguing as cooperation. When you raise them in a non-loving way you get 10 times more screaming and hitting than cooperation. See, love does not erase friction, because kids at this age need friction, just like a boxer needs to beat a bag. It's training for them. And as the parent, you are the bag.

I love my kids. I love my son and am fascinated by him. Everyone goes through stages. I did. I remember doing the same sorts of things to my parents that he does. Only, I was worse. And they were too, so that may explain it.

Thursday, April 01, 2004

Mi Español

My several semesters of studying Spanish in college finally paid off! Not at all like the semester falling in love with the woman in Spanish class who was already in a committed lesbian relationship. Not at all! I have forgotten most all of the Spanish I learned. Sadly. But when I went out the front door this morning I saw someone's smashed side mirror lying in my neighbor's driveway. I figured I would pick it up for her, and I noticed that it was one of those Dodge-looking mirror housings, black, like mine. I looked at my mirror on the curb side of my car, the mirror I installed myself (the car came without one). Maybe teenage vandals had broken off my mirror? Then I looked at the one on the street side. It was gone. Well, not gone: It was in pieces in my neighbor's driveway. She came out of the house, pointed out the car that had hit me, and said the guy was working a job at a house down the block just a bit. I went over there, and interrupted a Latino guy who had very poor English. He admitted that he had caused the damage, and in his broken English offered to pay for it. Part way through this mumbling conversation he asked me if I speak Spanish. I said, only a little. But, demonstrating the ubiquity of the internet, he named two web sites to go to in order to buy replacement parts. I ordered the replacement mirror that morning ($66.89 including tax and shipping). He called in the afternoon, and that's when my Spanish came to use. He seemed to be saying something about me selling the car, ("Queres vender el carro?") or maybe about him buying the replacement part. I switched to a mixture of Spanish and English to try to let him know that I did not want to sell my car ("No quiero vender mi carro.") , and that I had already bought the piece ("Yo he compro eso"), and that I would install it myself, and that he could just give me the money some time in the next few days. Those of you who actually know Spanish will notice that what I have typed here contains errors. Oh well -- it was good enough to serve my purpose.

My neighbor said he should have left a note on my car. But I have to credit him that he was scrupulously honest and helpful when I approached him about it. Maybe he is just an honest person. That's my impression.

You’re supposed to take Riluzole either one hour before eating or two hours after, to improve absorption. I finally moved into that mode on March 13, the day before we left for Hawaii. And I had no problem with it, and have been doing it ever since. But when you think about it, it is hard to schedule the pill-taking around your meals. Let’s say you get up at 8:00 and are starving. If you take the pill you have to wait until 9:00 to eat. If you eat and get done by 8:30, then you have to wait until 10:30 to take the pill. But the thing is, 10:30 is prime snack time for me. So, skip the snack, or impair the pill?

Plus, I have been ravenous since we got back from Hawaii. Maybe the sparse eating afforded by the plane trip caused a little deficit that my stomach is trying to make up for. Every time I turn around I am hungry, and start worrying about when to take the pill. I have decided on a policy: Try to space the pill as best you can, but eat when you are hungry.

Being tired doesn’t help. (Do I hear a groan from the audience?) Yes, that’s right, the toddler girl (she’s 15 months old now), was throwing a fit last night for two hours, at about 2 AM onwards. We think her molars coming in is waking her up. Yes, we gave her Motrin. And the, at 7 AM sharp, my wife jumps out of bed and says: “Maytag is here!” (We had called them to repair our dishwasher). I practically had an infarction, since the old corpus was in deep slumber mode. I staggered down there and let the chap in. He appears to have fixed it.

Yesterday and today I fought the weeds. They got a bit uppity while we were away for two weeks. Did you know that dandelions can reproduce both sexually and asexually? They don’t let’s just say, need a date. They don’t even need to flower. However, my approach, which seems to be working, is to dig them up whenever they flower or put up a seed pod.

Then there is the ivy. I hate it. You love it? Be gone with you. Ivy, it turns out, can spread itself on virgin ground by using seeds or spores or some danged thing. It does not need to send out creepers. I was dismayed to learn this, and I go around my yard constantly plucking the little sprouts out of the ground. Let’s hope they’re not like dandelions and able to regrow when you pluck them.

This is what is was like in my back yard today: gentle spring breezes and a warm, soft sun caressing my epidermis, the scent of blossoms in the air, lush leaves of temperate green plants bobbing. In short, paradise. And oh by the way, no mosquitos biting me.

Those of you who love Hawaii, run screaming from the room now. This ain’t going to be pretty. Aloha, I love you, and Hawaii is a special place. So beautiful. And the bright, clear colors (5 shades of blue?) in the tropical waters - amazing! And the perfect sand of the beaches... the stunning tropical fish wherever you look - fantastic! The majesty of the volcanic mountains ... the exotic plants ... the amusing birds ... all wonderful.

But basically the place is an armpit. The sun is a searing enemy. The humidity is oppressive. Mosquitos attack you when you walk out of the house. I really get annoyed by having to put on sunscreen and bug repellant twice a day. There are roaches. Plus, it rained 7 of the 14 days we were there. When I say days I mean days; It rained every single night. I would rather be in Prague with snow on the ground then be in Hawaii. Actually, Prague tried to kill me with air pollution and viruses, so I’ll just stay home.

Because I live in paradise.

Now, if you are a Hawaii lover, or a travel lover, or our hosts Ronolulu and Bananny, you may be shocked and hurt that I have said mean things about Hawaii. Please understand that I thought the trip was well worth it. The highlight for me was the snorkeling. It was like being in another world. I absolutely adored swimming after the cute little fish. And travel is, a priori, good. And it was great to see Ronolulu and his swee, kind wife. Ronolulu has been beset by so many medical problems, for so many years, and we came at the wrong time, because when we saw him, he was either sick or so jacked down on meds that he was practically not there. Or he had to work really hard to catch up with the time he missed while sick. But he perked up a little at the end, and generously took a day off to be with us, so it was good. We just picked a bad time. And the rain picked a bad time.

Don’t get me wrong: I respect Hawaii and I am grateful to our hosts for hosting us. They were incredibly generous. And the main thing that kept us apart was our need to constantly take care of the kids. Napping, feeding, pooping, entertaining, sleeping, dressing, haggling, bargaining, begging....

Even though I had fun, when I came home, I was so very impressed by the amazingly perfect place we live.

There’s no place like home.

Here's what I found out (before we went to Hawaii) about the various pills I am taking (aside from the riluzole):

CoQ10 - (Co-enzyme Q10) - anti-oxidant. Expensive. And it cures every condition that afflects humanity.

Creatine - "Creatine is a widely used dietary supplement principally taken to enhance athletic performance. It is a very strong candidate neuroprotective agent for HD and other neurodegenerative disorders because of its ability to ameliorate toxin-based animal models and because of our preliminary evidence in transgenic HD mice. However, there is only limited animal experience with creatine and there has not yet been any trials in humans with neurodegenerative disorders."

Vitamin E - anti-oxidant. Also, my doctors say it helps the riluzole be slightly more effective.

Vitamin C - Vitamin C promotes healthy teeth and gums, helps in the absorption of iron, aids in the maintenance of normal connective tissue, and promotes wound healing. It also helps the body's immune system.

DHEA - DHEA is a hormonal substance found in the adrenal glands and in the gonads of primates and a few non-primate species. It is also produced synthetically.

Ginseng - Numerous reports of adverse effects from products containing ginseng have been filed with the US Food and Drug Administration (FDA). The literature also documents "ginseng abuse syndrome" among regular users. The chronic effects of ginseng are not well characterized; studies of some components suggest anticarcinogenic activity.

Acetyl-L-Carnitine - L-Carnitine is a non-essential amino acid that can be synthesized by the body. Found abundantly in red meats, carnitine is stored in skeletal muscles where it is needed to transform fatty acids into energy for muscular activity.

B-75 Vitamin - This is not a vitamin but a product which supplies several vitamins. I have decided to stop taking it. The product supplies 200% of the vitamin A requirement, 833% of vitamin C, 100% of vitamin D, 333% of vitamin E, 5000% of Thiamin, 4412% of vitamin B-2, 375% of Niacin, 3750% of vitamin B-6, 100% of folic acid, 4167% of vitamin B-12, 25% of biotin, 1000% of pantothenic acid, and 100% of iron. Dang boy howdy I don't want all that! I'm already taking several of these things, plus a multivitamin. And I don't want several of the rest. For example the iron.

DHA - essential fatty acid. I am getting this in a fish oil concentrate which also contains EPA.

Flax seed oil - what the heck, why not? I think this may give me more essential oils.

Green tea extract - what the heck. It works for the Japanese.
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