Tuesday, May 31, 2005

Blog pause

I'll be out of town for a while, so expect my blog to resume on or around June 8. Don't worry, this is just a blog pause, not a blog death. I'm just going on vacation, it's not like I'm getting married to some guy with broadband in Bradford or anything, innit.

Monday, May 30, 2005


My son is five, and each morning he asks my lovely wife to name the character on his Flintstones vitamin. He never asks me, probably because he senses that I'll be noncompliant. The Flintstones brand of vitamins was introduced to the public in 1968. That would have made me five, too, when they first came out. We got them, but I think it was only once. There are a lot of things I remember from being a kid, but sometimes the meaning of what I remember only resolves when subjected to adult analysis. The reason we only got them once is that, as I recall, my Dad quietly signaled my mother not to buy any more. That was because of the naming trauma. Each time I had one, I would race over to one of my parents and ask them to name the character. My mom would make a good effort, but my father had the better strategy. He would (1) hold the vitamin in his own hand (2) study it for a very long time, and (3) say "I think it's Fred." He always said that it was Fred, no matter how many times I wailed at him that it was some other character. He was smart. He only played dumb. Just like George Bush. If my mom had done the same thing, I would have probably given up asking about the names, and stayed in my seat and eaten breakfast. After that period, I don't recall us ever taking vitamins. My mom said that we get all the vitamins we need from food. It wasn't until I was in my thirties that I began taking a daily multivitamin.

Left grip is 40 pounds (34, 40, 39), right grip is 93 pounds (90, 90, 93), left leg balance is 11.37 seconds, and inhale volume is 4750 mL.


Sunday, May 29, 2005

Take the cripples bowling, take them bowling

My lovely wife and I went to dinner and then bowling the other night with some old friends. I had some trouble controlling my laughter, because these are people I like to banter with, and too often when I had something clever to say, I just grinned. Most people who observed me stumbling and grinning and slurring would probably assume I was drunk. The afternoon before the date, I began to wonder if I could still bowl at all. It turned out that I could, but I had to do it by walking up to the line, standing still, and swinging the ball. It didn't go any too fast, but I hit a fair number of pins. We all stank as bowlers. I don't remember the scores, but think they were something like 89, 72, 68, and 62, with me being the 72. I used an eight-pound ball, whose thumb hole was too small. I was limping quite a bit, probably because I was tired. I even involuntarily did a cripple move when I tried a 14-pound ball, which had a bigger thumb hole. After I released it, my wobbly knees gave out and I almost fell to the floor. But I caught myself with my right hand in a tripod move before I collapsed. When people see someone collapse they tend to come running, like it was a heart attack or a stroke or like that. But in my case, it's just a klutz falling down, so I'd rather not get folks excited.

Left grip is 42 pounds (35, 38, 42), right grip is 95 pounds (95, 85, 95), left leg balance is 9.19 seconds, and inhale volume is 4700 mL.


Saturday, May 28, 2005


I've been back on the B12 and alpha lipoic acid for while now, and no rashes. So I think it must have been the dye in those 100-percent cotton shirts.

Left grip is 41 pounds (33, 41, 38), right grip is 95 pounds (88, 90, 95), left leg balance is 8.02 seconds, and inhale volume is 4700 mL.


Friday, May 27, 2005


My mother was a good mom, insofar as was possible for her, and that meant that when all was said and done, she was good. She created an example in many ways, and taught us strong values. She was effusive in her praise for us, but every now and then the act would falter.

I was the youngest, and the only boy. When I was in kindergarten, there was that time when some friend of hers said "So, now all of yours are in school?" My mom said "Yes!" with an enthusiastic hiss, and drew in her clenched fist. I asked her about it later. It seemed to me that she was glad to have us away. She said no, I misunderstood, she was just proud of us, and happy for us, is all. I accepted that. But the gleeful hiss, and the gesture, stayed with me in memory. Now I understand.

Then there was the time, perhaps even before kindergarten, that some other kids and I did our ritual running in circles, throwing our arms in the air, and yelling. We loved it. The various moms at that event usually asked us not to do it, but we did it anyway. Some other mom said something about packing up the little monsters, and my mom agreed, using the same word, "monster." Later when we were in the car I asked her, "Mom, I'm not a monster, am I?"

The odd thing about it is that, though I a pressed her on the issue several times, she just kept her jaw clamped shut and drove. Most parents would have said something like, "Oh, no, Honey. We were just making a little joke."

Then there was the time, after my own kids were born, that I was standing in the kitchen with her, at this house, telling her how wonderful it was to be a parent, and how miraculous kids were. She looked at me and said something which I may not quote perfectly here, but which was in effect: "You were a nightmare to raise. An absolute nightmare."

She's never said anything like that before, and I doubt she remembers, or would admit, saying it at all. The facade rarely slips.

As I said before, she was a good mother, and constantly supportive of us. I never got into any serious trouble as a kid, and was meek and bookish, despite having quite an independent and rebellious way of thinking and talking. Let's put it this way: I always did my homework and my chores, no matter what teenage nonsense came out of my mouth. And as a young child I was profoundly obedient, despite mouthing off whenever possible. If that sounds like a contradiction, I hope you can cope with it. It's no great wound, but on rare occasions I do still think about the contradiction of being raised and loved so well by a mother who apparently hated doing it.

Gozar update

'Gozar' is a great kid currently in the Army in Iraq. He's smart and conscientious, has been giving shoes to little kids over there. I wish all our soldiers were like him.

Now Susan Johnston reports:

Thought you would like to know that the US Army shut down Joe's (Gozar's) blog site for now, and until further notice, he isn't allowed to post. I suppose the comments about the anniversary of the "end of the war" and Bush angered some....

Keep in mind this is just a theory, though a plausible one. I think this was the post in question:

And counting
Two years ago today President Bush stood on an aircraft carrier off the Persian Gulf and declared "mission accomplished." Since that speech 1449 American soldiers have died here in Iraq. Though strides have been taken, a successful election, stabalized infrastructure, etc., from where I stand the mission is not yet accomplished. As long as American men and women continue to lose life and limb I’ll have a very diffucult time calling this war a success. The cost of our campaign here continues to rise daily. Though two years have passed since Bush declared an end to major combat, we are still here and are very much still engaged in major combat. I know that to many people this war has grown old. We grow tired of hearing politicians speak of it, and we often wish the news would find something new to cover. But please don’t forget that we are here and that we are still fighting. It is up to you to decide for yourself whether this war has been worth the price, but for better or worse we are seeing this one through.

Left grip is 40 pounds (37, 38, 40), right grip is 100 pounds (90, 100, 95), left leg balance is 12.02 seconds, and inhale volume is 4750 mL. That second right grip result made me suspicious, so I went and watched the third one in the mirror. It seemed legitimate.


Thursday, May 26, 2005

Like a virgin

I remember years ago when Madonna's "Like a virgin" came out, only because the arts editor showed me the vinyl LP, on which she's all tarted up, and said "There's this new girl who's got a big hit, and the cover cracks me up because she's so obviously not a virgin." Never before, and never after, did any of the arts editors or writers show giddy interest in a product of popular mass culture. I assumed that it was pure trash and had no more interest in it than I would have in a discarded candy bar wrapper. I remember being puzzled at why the arts editor cared at all. The thing that sticks out in my mind now is that she was the "new girl." What this means is, I am old.

Left grip is 39 pounds (36, 39, 36), right grip is 91 pounds (90, 91, 90), left leg balance is 11.94 seconds, and inhale volume is 4750 mL.


Wednesday, May 25, 2005


I think it's been about five months since I last turned on my Windows computer. There were 35 critical security updates to install. This only proves that Microsoft is the best operating system, because the insurgents are getting so desperate. They hate freedom.

Left grip is 41 pounds (39, 41, 41), right grip is 96 pounds (96, 90, 94), left leg balance is 9 seconds, and inhale volume is 4750 mL.


Tuesday, May 24, 2005


I resumed the bedtime creatine last night. Today I am going to experiment with taking my pills at night instead of in the morning, on the theory that the body does its repair work at night.

Left grip is 40 pounds (38, 36, 40), right grip is 93 pounds (88, 90, 93), left leg balance is 15.68 seconds, and inhale volume is 5000 mL.

Here are the charts for the grip strength and the breathing:


Monday, May 23, 2005


I rented the DVDs for Band of Brothers, and I am reading the book. This has the value of being about actual soldiers, and describing events that really happened.

Left grip is 38 pounds (38, 35, 35), right grip is 92 pounds (89, 92, 89), left leg balance is 14.21 seconds, and inhale volume is 5100 mL. I kid you not about the inhale. It was clean and simple, and the thingy went as high as it physically can before running out of space. I was so amazed I did it again, this time on videotape. Then, when I continued taping, for the video I am making about my illness, I squeezed 90 pounds on the dynamameter with the right hand and 42 with the left. But the testing protocol is what it is, so I won't change today's data.


Sunday, May 22, 2005


There is a famous guy who used to rant about how the internet was bad because people too often go online, for example, to learn about trees, which detracts from experiencing real trees. We lived in the same neighborhood for a time, and one day I saw him pushing a stroller and walking a toddler. The toddler, in typical toddler style, stopped at a tree and marveled "Look at the treeeee!" The famous guy was not interested in another delay. "Come on," he said, "we don't have time for that."

Yesterday and the day before I did not take any metrics. Today my left grip is 40 pounds (37, 36, 40), right grip is 90 pounds (90, 90, 85), left leg balance is 5.99 seconds, and inhale volume is 4800 mL.


Saturday, May 21, 2005


We ate lunch at Denny's on Friday. The clearest voice for overhearing was a large woman sitting obscured by her smaller friend, and across from Leonard. All three were in their 60s and properly dressed. I thought they might be from a church group, because of references to "sister" so-and-so and "sister" this-and-that. But it was Friday. The distinct woman was talking in great narrative detail about her mammogram. I've never had one, but it sounds ouch! When they said they wanted to get another picture because they'd found something, all these thoughts went through her head, Leonard. Leonard was a tall man with a large chest and skinny legs. He almost never spoke, nor did the smallish woman obscuring the woman of distinct voice. Leonard mostly held up his coffee cup, trying to signal for a refill from staff who never noticed him. The distinct woman used his name about once a minute, Leonard, at seemingly random points in the narrative. After the mammogram results turned out harmless, we heard about this woman she met on a bus, years ago, who was tall and thin, Leonard, not stout, but like her (I didn't see the gesture but I assume she pointed at my lovely wife's back), and absolutely beautiful, with gorgeous green eyes. German. And just a miserable alcoholic. He left her, you know, Leonard. So, after her own mammogram turned out harmless, she ran into this same German woman ... again on a bus! She'd gone into the program and finally dried out after all those years, and turned her life around. She met a wonderful man, married him. That's how she's doing. And now she has breast cancer.

Friday, May 20, 2005

Ugly bags of mostly water

One way to calibrate the hand dynamometer would be to loop a line over it and use it to slowly lift a known weight. F=MA and you know how tricky that gets, so we'll keep acceleration to near zero. I did that recently with some twine and a crow bar (estimated weight: 10 pounds), as well as 40 pounds of water. It seems to read accurately and consistently with the known weights. I think what I'll do is fill a plastic garbage bag with five gallons of water, loop the ends over the dynamometer, and slowly lift. Then I'll water the plants from the bag.

Thursday, May 19, 2005


Riverbend's blog is usually good, but in her May 18 post she seems a bit credulous:

The interesting news started circulating a couple of days later. People from the area claim that the man was taken away not because he shot anyone, but because he knew too much about the bomb. Rumor has it that he saw an American patrol passing through the area and pausing at the bomb site minutes before the explosion.

I think the rumor is interesting and worth noting, but to fail to blog on the obvious flaw in the accusation is an oversight. If the Americans plant bombs, they're not going to do it from a US Army vehicle. And if they "overlooked" it, then they just failed to detect it. Or maybe they saw it, and called in the bomb disposal people, but it went off before disposal could get there. Or maybe the bomb received a command detonation signal when the patrol went by, but some technical glitch delayed the explosion.

Now, the bit about the man being hauled away because he made this accusation seems credible. River just needs to use her thinking cap. But who am I to criticize an oversight in her blog -- I'm not blogging under fire, I have 24/7 electricity, and I still got my "good cholesterol" and "bad cholesterol" mixed up!

As for her hunch that the Koran desecration story is true, I'd tend to agree.

I want to thank everyone for the incredibly useful comments to my prior post. I'll respond to those soon.

Left grip is 39 pounds (37, 39, 37), right grip is 89 pounds (85, 89, 89), left leg balance is 9.16 seconds, and inhale volume is 4750 mL.


Wednesday, May 18, 2005


Pierre did some analysis of my metrics that he's authorized me to share:

I entered your numbers in an Excel spreadsheet and I get the same results. ...[T]he variation of the best try out of three is roughly +/- 2.

I also calculated the slope of the curves. For the first period the slope of the left hand curve is -0.067 and for the second period the slope is -0.11. For the entire period, that is from the 2/9/05 to the 5/14/05 excluding the days when no measurement was done, the slope of the left hand is -0.09. For the first period, the slope of the curve of the right hand is + 0.27 and for the second period, the slope is -0.06. For the entire period (2/9/05 to 5/14/05) the slope of the curve of the right hand is +0.049.

This is just putting numbers on the curve that you have plotted. It confirms that you lost strength in the left hand in both periods and that the loss in the second period is worst than in the first. As for the right hand, you gained strength in the first period but lost some in the second. Overall, you gained strength in the right hand.

What does this say about your ceftriaxone trial? Maybe the loss of strength in the left hand would have been worse if you had not taken the drug. But unfortunately it appears that the ceftriaxone has not stopped the loss of strength in the left hand. I don't know if the initial gain of strength in your right hand can be attributed to the ceftriaxone, but it seems now that you are also slowly losing strength in your right hand.

I often wonder what are the effects of these daily measurements on your morale. In your blog, your morale seems good. I hope that these numbers don't depress you.

Thanks for the analysis, Pierre. Knowing the numbers makes me feel more secure. Not knowing would make me anxious, but nothing has been able to make me depressed in my adult life. Lately, my self-measured inhale volume and the ALS clinic measurements of my breathing all show improvement, so that metric even offers hope.

I started taking the Alpha Lipoic Acid and the sublingual B-12 again today. We'll see if they restart the rashes.

Left grip is 41 pounds (37, 41, 40), right grip is 93 pounds (88, 93, 91), left leg balance is 16.17 seconds, and inhale volume is 4800 mL. I've had fasciculations across my nose today and yesterday. Not the first time it's happened. It feels a bit odd.


Tuesday, May 17, 2005


Been feeling good lately. Have not yet caught the cold from my daughter. She's very chipper and happy despite being sick. I think she's almost over it now.

Might have to put gas in the new car today. Finally figured out how to put those floor mats in. I put them in one way, then my mother came and turned them 90 degrees. Oh!

I went to see the local neurologist today. There I weigh 135.25 pounds. I need to eat more, because lately I have been slacking off. On his dynamometer my left grip is unchanged at 37, while my right grip is 98. Units are unknown and test method differs. When using my unit, I have been feeling a pain more frequently when a tendon in the palm of the right hand crushes up against the metal handle. On my unit, left grip is 42 pounds (37, 42, 39), right grip is 97 pounds (88, 97, 87) -- no torque -- left leg balance is 8.54 seconds, and inhale volume is 4900 mL.

As requested by Robert, the new car:


Monday, May 16, 2005

Hair of the dog

If there were a WMD case for preemptive war, then it was (and is) much stronger regarding North Korea, which openly boasted of its progress towards building nuclear weapons, than it ever was for Iraq. Iraq was supposed to be the easy one, the warm-up act to intimidate Iran, North Korea, or any other country that wanted to oppose the US. The incompetents in Washington probably anticipated some insurgency in Iraq, but not on the scale that they got.

The problem with the occupation of Iraq is that the fighting must be done between US soldiers and local insurgents. No matter how much we try to 'Iraqize' the conflict by training local forces, the ultimate goal of the insurgents is always to harm US personnel. Terrorism against civilians is part of their technique, but their main target at this point is the US occupation.

Iran might well play out in similar ways.

But North Korea offers the option of Let's You and Him Fight. That is, once the US military obtains a battlefield victory over North Korea, then South Korean troops fight whatever insurgency develops. Pardon me for predicting, but I don't think that will be much.

Now, the freaks in Washington, the people who operate the president, may very well know that he is spent. He himself, and the supposed values that make him distinct, are going to be increasingly reviled by Americans and by history. So, they may reason, why not use him while we still have him in office, and gamble on something that may snatch victory from the jaws of defeat? At the least, an invasion of North Korea can keep things dynamic and maybe open some new ground for the '08 candidates (some combination of McCain and Powell is my guess).

The Korean people, and Japan and China, may shudder in horror at this prospect. But a war over there, in which mostly Koreans get killed, even if there are mass civilian casualties, possibly due to the use of an atomic weapon against Seoul, makes sense in a poll-driven, racist kind of way. The use of an actual WMD in a Korean conflict could bolster support for the president's ignorant and dangerous foreign policy in the minds of many Americans. "He was doing the right thing invading countries looking for WMD, because look what happened when he invaded North Korea!" Plus, The War going into '08 would be the Korean war, not that increasingly forgotten thing in Iraq.

It's a war we could win fairly quickly, in the "Mission Accomplished" sense of the initial, conventional military conflict involving planes and tanks. There would likely be little insurgency after reunification, and even if there were, the South Koreans would have to do the dying.

The North Koreans have very difficult supply problems. They can barely get food to their garrisons. They have difficulty deploying and staying on alert for extended periods. We may toy with them for months, forcing them to stay on alert while we feint.

For their part the North Koreans have two trumps. One is that they likely have one or more atomic weapons, home grown, or Soviet and acquired on the black market. The means of delivering the weapon by missile are possibly subject to frustration by US weapons, such as land- or sea-based theater missile defenses. Delivery by airplane is even less likely. So the weapon is probably already pre-positioned in South Korea. You can bet that the geniuses in Washington aren't looking for it, and are going to act mighty surprised if it goes off. "No one could have predicted that, any more than they could have predicted 9/111!"

The other, and better trump, is this supposed huge number of hardened artillery that the North Koreans have ready just North of Seoul. I think I heard that they could fire in excess of 100,000 rounds per hour into Seoul. Seoul may be big, but after a day of that, the city is going to look like the Moon.

So, if the US is going to drag South Korea into a preemptive reunification war, there has to be a plan for attacking and silencing as many of those guns as possible. Or there will be a plan for the orderly evacuation of the population of Seoul. We may concoct a story about an imminent North Korean invasion, or some ruse related to a North Korean nuclear test, to get those people out of there before the invasion.

Or, maybe the people in Washington welcome the idea of mass civilian casualties on the South Korean side. "See, I told you our enemies are barbarous, and I thank God that George W. Bush was taking the fight to them from the first day of his presidency!"

I was away with my son all day and only did these in the afternoon... Left grip is 40 pounds (36, 40, 40), right grip is 91 pounds (90, 85, 91), left leg balance is 9.9 seconds, and inhale volume is 4750 mL.

But Tom Clancy did

Sunday, May 15, 2005


Pierre, your point about drift in the dynamometer instrument is well taken. Using my wife as a normal control might be impractical and inconvenient. Better would be to periodically calibrate the unit using a known weight, or some professional calibration tool.

My spreadsheet calculates an average by summing the values and dividing by the number of values (a mean), and a standard deviation. I used the two series from 2/9/05 (day 391) to 3/29/05 (day 439) and from 4/2/05 (day 443) to 5/10/05 (day 481), in order to exclude the infusion periods where I had a needle in an arm and was not taking a measurement from that arm.

In the first period the left mean was 47.47 and the left standard deviation was 2.48, while the right mean was 93.68 and the right standard deviation was 5.15.

In the second period the left mean was 43.32 and the left standard deviation was 2.23, while the right mean was 94.58 and the right standard deviation was 2.36.

I try to be careful, but I have made many whopping mistakes in my life, so I hold out the possibility that I somehow calculated the means and standard deviations wrong. This is the data I used:

2/9/05 391 49 91
2/10/05 392 50 85
2/11/95 393 47 91
2/12/05 394 49 90
2/13/05 395 45 82
2/14/05 396 47 82
2/15/05 397 47 88
2/16/05 398 47 91
2/17/05 399 51 91
2/18/05 400 46 89 germs
2/19/05 401 45 88 Germs!
2/20/05 402 48 87 GERMS
2/21/05 403 44 86 germs
2/22/05 404 49 89 turned corner
2/23/05 405 48 90
2/24/05 406 51 85
2/25/05 407 51 95
2/26/05 408 51 96
2/27/05 409 47 95
2/28/05 410 48 95
3/1/05 411 50 96
3/2/05 412 52 96
3/3/05 413 48 94
3/4/05 414 46 89
3/5/05 415 49 90
3/6/05 416 51 99
3/7/05 417 52 96
3/8/05 418 51 97
3/9/05 419 48 98
3/10/05 420 47 95
3/11/05 421 50 95
3/12/05 422 47 97
3/13/05 423 44 96
3/14/05 424 47 104
3/15/05 425 50 95
3/16/05 426 48 98
3/17/05 427 46 98
3/18/05 428 48 95
3/19/05 429 45 97
3/20/05 430 43 97
3/21/05 431 44 95
3/22/05 432 45 98
3/23/05 433 42 97
3/24/05 434 46 95
3/25/05 435 45 102
3/26/05 436 45 105.5
3/27/05 437 45 95
3/28/05 438 46 97
3/29/05 439 46 98
3/30/05 440 0 105
3/31/05 441 0 99
4/1/05 442 0 103
4/2/05 443 46 98
4/3/05 444 47 97
4/4/05 445 46 96
4/5/05 446 47 95
4/6/05 447 45 95
4/7/05 448 45 96
4/8/05 449 47 98
4/9/05 450 45 95
4/10/05 451 46 93
4/11/05 452 44 99
4/12/05 453 45 100
4/13/05 454 39 97
4/14/05 455 46 95
4/15/05 456 44 91
4/16/05 457 40 93
4/17/05 458 44 94
4/18/05 459 43 93
4/19/05 460 42 92
4/20/05 461 44 96
4/21/05 462 40 90
4/22/05 463 40 94
4/23/05 464 44 94
4/24/05 465 41 91
4/25/05 466 42 92
4/26/95 467 43.5 93
4/27/05 468 43 96
4/28/05 469 41 93
4/29/05 470 40 94
4/30/05 471 45 97
5/1/05 472 44 95
5/2/05 473 46 92
5/3/05 474 42 98
5/4/05 475 42 94
5/5/05 476 42 94
5/6/05 477 41 95
5/7/05 478 41 90
5/8/05 479 42 95
5/9/05 480 42 94
5/10/05 481 43 95
5/11/05 482 0 94 cef needle left arm
5/12/05 483 0 100 cef needle left arm
5/13/05 484 0 91 cef needle left arm
5/14/05 485 41 96 cef needle removed from left arm

Left grip is 40 pounds (36, 38, 40), right grip is 95 pounds (95, 95, 93), left leg balance is 8.65 seconds, and inhale volume is 4800 mL.


Saturday, May 14, 2005

C5: Sick baby girl

My two-year-old daughter's two-year-old friend came over yesterday for only three hours. He had a small bit of runny nose problem, though he got over his cold a day or so previously. Our girl woke at two a.m. cranky and sick. My lovely wife did the work, as usual, and continues to do so now, while I take pills and type this.

Right grip is 96 pounds (87, 90, 96), left leg balance is 14.16 seconds, and inhale volume is 4900 mL.

I did the final ceftriaxone infusion and later tested my left grip strength at 41 lbs (37, 38, 41).

Next time, I am thinking of infusing for three days instead of five, at three grams per day instead of two. That way I get nine total grams instead of 10 total grams. Having the needle in my arm for five days is annoying, and I would find it psychologically easier to have it there for only three days. Plus, with warmer weather coming, there will be less time spent in the long-sleeved shirts that I wear during the infusion period to hide the needle from the kids.


Friday, May 13, 2005

C4: Torque

Yesterday's uptick in right grip strength may seem hopeful, but take a look at the chart and note that last time I infused ceftriaxone, there was a spike on the right hand side, and no increase in left grip strength after the infusion period, but rather, a gradual decline in both.

I am aware that the dynamometer reading can be distorted by sudden torque on the unit. The dial faces away from the user, and this torque might happen during the squeeze, or after the squeeze and before the dial is read. However, when I scored 100 yesterday, I was being careful not to torque the unit. I attribute the high score to good technique, and to a full yell instead of just a grunt.

Then, because I was concerned that I might be deceiving myself, I stood in front of a mirror the final time, so that I could see the needle during the squeeze. The fact that it got to 95 reassured me that it had not been torque when I scored 100.

Happy 16-month diagnosis anniversary.

Right grip is 91 pounds (84, 91, 90), left leg balance is 16.15 seconds, and inhale volume is 4900 mL.

Thursday, May 12, 2005

C3: Arabic

My lovely wife and I are interested in Learning Arabic, because it's a language neither of us know, and it's topical. It would be fun to toss around simple household phrases (e.g. "Hand me that sippy-cup, please"). I spoke to a Moslem friend of mine about what would be good learning resources, since the Koran is in Arabic, and I assumed that my buddy knew some Arabic. They have a principle that the only valid text is the original. Translations are not valid for worship. That Mohammed, he was no slouch. I also like the bit where he said I am the last prophet. And I also like the bit where he said he was just a man, not a god or a son of god. Anyway, my buddy said that the best way to learn Arabic is to get the Koran, and get a translation, and go though it line by line. That amused me. As all of you know, I am not going to sign up to any Abrahamic religion, but I thought that my buddy's advice was a very nice try. I think I'll get a book with a CD instead.

Right grip is 100 pounds (94, 100, 95), left leg balance is 6.67 seconds, and inhale volume is 4750 mL.


Wednesday, May 11, 2005

C2: Not funny

The Namenda really does seem to be controlling my 'lability.' Now I can often keep a straight face where I would before have been laughing and unintelligible. If it's able to do that, then maybe it's doing other good things?

Because I have the IV needle in my arm, I'll have to delay the self-inflicted haircut.

I've been drinking a glass of tonic water before bed each night, because the clinic people said the quinine helps fight cramps. I wonder, though, if I can just get quinine in a pill form. My leg muscles are stuff and spastic on waking, but since I went back on the bedtime creatine (plus Namenda and tonic water) there have been no painful cramps on waking.

The rashes are gone. I think it was the dye in the shirts. I'll try starting the B-12 and alpha lipoic acid again.

Right grip is 94 pounds (88, 94, 90), left leg balance is 11.8 seconds, and inhale volume is 4800 mL.


Tuesday, May 10, 2005

C1: Goodbye, Champ!

We bought the new car yesterday, a Subaru Outback. It has power everything and is easier to operate. In the afternoon I saw a college professor of mine. That was nice.

I donated the trusty old Neon to a local radio station that plays NPR. They came and towed it a few minutes ago. I thanked it yesterday when I unloaded it, and I thanked it again today by taking a knee and thinking: "Thank you." It was the first car I ever bought, and it's hard not to personify something that served me so well for so long.

While the guy was loading it onto the tow truck, and I was taking ceremonial pictures, I heard the distinctive growl of a fighter jet. It flew overhead just as my goodly car was being winched. A military salute for a heroic car.

Not unlike our washing machine had a power consumption rating (very low!) the Outback has a pollution index rating. No kidding. It is very low as well.

Today I started another five-day round of two daily grams of IV ceftriaxone, so the left arm metric will be absent for the duration.

However, I did my metrics today before they put the needle in.

Left grip is 43 pounds (39, 39, 43), right grip is 95 pounds (91, 90, 95), left leg balance is 19.82 seconds, and inhale volume is 4800 mL.

Monday, May 09, 2005


I was looking once again at the series of photos I took with my work buddy when running in the hills in 2002. And they tell me that ALS had not begun to affect me in 2002. The reason is that after running for a few miles in the hills, my buddy and I came to a killer hill, a very steep one, and we punished ourselves by running to the top. I pushed with everything I had, and got to the top before he did. I felt my body groan, but I also felt it dig in and respond. My buddy was no slouch. He's currently winning races.

I remember a later run (probably summer of 2003), in which I thought I had heat distress. I just could not go on. We had to stop. I had these rippling cramps in my buttocks. I think it was the first sign of ALS. I remember trying to get my running back in gear after that, but each time I went out, I still seemed to have lost my edge. I was then, and remain now, very willing to wait, rest, and recover. It's not like I was pushing too hard and thus staying fatigued. I kept resting and I kept finding that I had lost my edge. Even weeks later.

I think that was the beginning of symptoms. I thought I had written about this heat distress incident before, in this blog. But now I can't find that account.

Left grip is 42 pounds (39, 42, 42), right grip is 94 pounds (86, 88, 94), left leg balance is 12.4 seconds, and inhale volume is an amazing 4950 mL.


Sunday, May 08, 2005


I don't go to the gym anymore. For one thing, the membership expired, and for another, I rarely went. I'm sure I could do that light workout (at least, as of this writing), but I didn't get much out of it.

It's official, the number of pushups I can do is zero. That's something many people strive for: "I don't ever want to do another pushup!" But in my case, I took a vow, in the seven grade, against situps. The heck with that.

Yes, I am going to make an appoinment with a P/T to do ROMs.

I'm not sure yet, but the Namenda may be making me more tired than usual. And it may be helping with the inappropriate laughing.

Sometimes I feel sad when I look at all the house projects I did. I miss that unquestioned sense of being able to heft things around, mark, cut and nail. Even in the hot sun, with sweat all over me, I could count on my muscles. I miss that.

Some things are getting better. I remember an extended period at work when I got so fried that I could not look at a phone number and then remember it long enough to dial it. I had to do it three numbers at a time. Honest. Now, these days, I catch myself often glancing at a phone number and then dialing it without referring to it.

Left grip is 42 pounds (35, 38, 42), right grip is 95 pounds (92, 86, 95), left leg balance is 7.72 seconds, and inhale volume is 4750 mL.


Saturday, May 07, 2005

Isotoma Floritis

Our neighbor has this large patch of Bluestar Creeper (Isotoma floritis), and the snails don't appear interested...

I'd like to use it to fill in the gaps between the new stepping stones we laid down. I went to the nursery and got a tiny flat of it, which I divided up into about eight little tufts...

The snails ate them one by one...

So I built metal cages for the surviving tufts...

The next morning, I was satisfied to see a shiny snail track dried on the cage above the tuft that they had been attacking before I put the cages on.

Of course, we can't keep the isotoma in cages forever. My theory is that the colony my neighbor has is mature, and doesn't taste good to the snails because it is old and tough. The sprouts I bought at the nursery were probably young and tender, forced up quickly for commercial purposes. Tasty. After being protected by the cages for a while, hopefully the snails will lose interest in the mangy old stuff. Hopefully.

Otherwise, our neighbor may have a slightly different species, and we will come begging for little snips of it.

Left grip is 41 pounds (38, 41, 40), right grip is 90 pounds (84, 85, 90), left leg balance is 6.89 seconds, and inhale volume went to an awesome 4900 mL, a level not seen since October, 1 2004!


Friday, May 06, 2005

Selection engine

Coughing woke me up. Hence the hour of this post. When I sit or stand, the coughing stops. I think the deeply-retrieved sputum was ... brown? The mere hawking sputum is clear. The nurse said yesterday that my lungs were "perfect," but she thought it was viral. I sure don't feel sick.

Lots to disagree on, but at least Blair speaks in complete sentences, isn't faking a Texas accent, and appears to have been awake in college.

I've been toying with this idea for years, but have yet to do anything about it. I'd normally put it in the Some Day category, but since I am rumored to have limited "some days," I'll toss it out to see if y'all have heard of anything like this.

Picture microorganisms in a fluid. Amoeba, paramecia, bacteria, whatever. The fluid circulates with the assistance of a pump. Through a very fine filter. All the big organisms that don't pass through the filter are killed. Or maybe the small ones are. Whatever. The mechanism does this at regular intervals and exerts a selective pressure on size. The size of the mesh holes are progressively altered. It would be interesting to see at what point the constraints on size (both large and small) hit. I think this would tell us more about the limits of biochemistry than about genetic potential. At what point is a cell too big for necessary reactions to take place? All Steve McQueen references aside, what is the largest cell found in nature? (Apparently it is an Ostrich egg). Can we make an amoeba larger than that? When does a cell become too small to function?

You can set up a similar rig to select for speed. The mechanism regularly exposes one end of the fluid to something unpleasant (like heat), and those amoeba or paramecia that move away from the heat fastest, live to breed while the others die. It's easiest to do this with aquatic microorganisms, but the same could be done with fruit flies.

Yes, I know it's cruel, but how cruel can you be to bacteria or plankton or amoeba? Has anyone done this?

Left grip is 41 pounds (39, 41, 39), right grip is 95 pounds (95, 95, 88), left leg balance is 10.1 seconds, and inhale volume is 4800 mL.


Thursday, May 05, 2005

Ka-ching! ... Ker-plunk!

On 4/13, the Social Security case worker told me it could take up to four months for SS to review my application, but by 4/30 I had received the check. At least in my local office, the people seemed bright and helpful. When I called the national number, they seemed dumb and confused. I had filed an incomplete application online who knows how many months ago. But then I started getting serious about making phone calls and providing paper forms and information in late January of this year. So after five months of 'being serious' about it, the check came.

Now I suppose that my LTD insurance company is going to want the entire amount of SS back payment given over to them. Their policy says they'll pay me over and above the amount of my SS disability benefit (...or any other income I get...) to match a given percentage of my working income.

I am also automatically eligible for Medicare. I chose to pay for part B, and that's being deducted from my SS check.

After I wrote the above, I checked my email and learned that someone I wrote with has apparently died of ALS. She wasn't as close as a 'friend,' but she was so damned determined to fight this disease and take public officials and hold their face in it and make them stop ignoring us and do something:

I am writing this to you on Dee's behalf, as we are deeply saddened to announce that she bravely succumbed in her fight with ALS last evening. She fought so hard, but has finally achieved the comfort and peace she so deserved and which has eluded her the past 18 months.

She wanted everyone to know how much it meant to her to have connected with each of you in some special way during her lifetime, and she wishes you good health and the ever-present love of your family and friends.

We are sorry that we will not be able to respond to most messages that may come into this e-mailbox going forward, but please know that we appreciate your thoughts and prayers at this difficult time.

I think the Namenda may indeed be helping suppress the lability, because I am not crying as much now over Dee as I think I would have before.

Left grip is 42 pounds (39, 40, 42), right grip is 94 pounds (92, 94, 88), left leg balance is 19.18 seconds, and inhale volume is 4700 mL.


Wednesday, May 04, 2005


I also rented and watched Patton the other day, and I must say that this film shows its age, and is not an enduring classic, despite how important it may have been at the time.

They spend an inordinate amount of time on marching bands, for one thing. A movie has a tale to tell, and limited time in which to do it. If I were making a film, seconds would be precious. This whole film moves at a slower pace, from a time when television commercials lasted a full minute.

The battle scenes, except for the one in North Africa, are often gratuitous and seemingly unconnected to the story. They seem like merely a collection of special effects. The effects might have been fantastic for 1970, but now they seem cheesy. It's embarrassing to watch a bunch of guys leap up into the air to die right before the shell explodes.

Considering the slow pace, and the often pointless special effects, not very much story gets told. Another flaw of this movie is that it focuses on one man, and makes the ordinary combat soldiers seem like Hollywood extras.

Saving Private Ryan took us to the ordinary soldier, and tried to show that they were real people. Particularly when watching Tom Hanks, he conveyed that he was just a civilian, like you and me, who had been thrust into extraordinary circumstances. He seemed to find war extreme and bizarre, no matter how effective he might be as a soldier.

Another thing that seemed to be more "true" in Ryan was the way the men coped with the fact that so many of them were falling, like leaves from a tree. They didn't treat it as unimportant, but they treated it as routine. When so many people are dying, all around, and when you might be next, and when there is still a job to be done, which entails risking your own life again and again, then a casual response to death seems essential.

Patton, unfortunately, gets sappy over the death of a chosen actor, and does linger affectionately on some corpses, but seems cartoonish in accepting the droves of guys being blown up in the special effects.

Ryan, I think, is a classic. Patton is going to become harder and harder to watch.

Then again, a war movie can be contemporary, and still have cheesy special effects, and still fail to capture the drama of the individual soldier, as cartoonish actors jump around from one fake bush to another, waving submachine guns like hoses, deftly mowing down dozens of enemy soldiers who, conveniently, jump up, shout a war cry, and then consider using their weapon, as in the feeble "Windtalkers" with Nicolas Cage. To do a movie about the invasion of Saipan, and completely leave out the civilian mass suicides, indicates that the people who made this movie just wanted to do an action flick, and oh by the way, set it in WWII. If they'd made a movie about a real hero on Saipan, instead a made-up one, it might have been worth watching

Left grip is 42 pounds (37, 42, 36), right grip is 94 pounds (94, 94, 93), left leg balance is 14.2 seconds, and inhale volume is 4750 mL.


Tuesday, May 03, 2005

Clinic visit notes

I went to the ALS clinic on Monday, May 2, and these are my notes.

Forced vital capacity, the test sine qua non, was 96 percent (92, 93, 96). On 1/28/2004 when they confirmed my diagnosis, it was 94 percent. So, holding steady.

My inhalation force was over 120. The dial only goes up to 120. In April of 2004 it was 115.

My peak cough flow rate was 600, which is down from the 700 of April 2004 ... but I woke up yesterday morning with a sore throat which may be due to a cold but which is probably allergies -- and so, I didn't want to cough very hard. My body nixed the idea.

My weight was 138 pounds. Blood pressure 149/85, but I was stressing that I might have offended the technical guy, so that probably explains that.

They also have this test of saying animal names (any that you can think of). I said 26, which they said was fine. In April 2004 I said 25. But you know, this time I got about 75 percent to the time limit and then just stopped, because it seemed so silly to be standing there saying "Uh, kuala, uh, piraña, sloth..." I didn't even go into reptiles or sea life.

My blood oxygen level was 98 percent, which they found by using that cool laser-based scanner. That's good, I'm told, but blood oxygen level is one of the last things interfered with by ALS, so don't obsess on it.

They seemed to find the creatine before bed idea novel and worthy. I hope it helps someone else. They also suggested drinking tonic water before bed, because the quinine helps reduce cramping.

They also suggested Robitussin DM to reduce cramping, but I ain't going there.

They want to get me to try Namenda again. They said it would help reduce cramping, and be a good stand-in instead of riluzole. But it may make me a bit more loose and stumbly, so I need to be extra careful. They hadn't known I'd already tried Namenda. I told them about the forgetfulness I had experienced, and they said that didn't sound related. The clinic doctor wants me to take the entire daily dose at night, instead of splitting it between morning and night. So I started that last night. They even gave me a brand-new starter kit. I'd gotten halfway through the other one before bailing out. The doctor said the risk with Namenda is constipation. She said it may make me more wobbly for a while, but that it might even help control the "lability" (inappropriate laughing).

The people from ALSA and MDA are wonderful, as usual.

They gave us a number of small aids to help with gripping things, plus a number of pamphlets.

There really ought to be a way to make a .WAV file on a Macintosh, I just don't know how. The purpose would be to feed my own voice, at some point, into a speech device.

We also talked about Medicare, Medigap (plans A through J!), and how to make that COBRA transition which I soon will, given that my employer was supposed to terminate me May 1 (due to extended long-term disability status).

They repeated again: Always elect part A and part B of Medicare, even though you do have to pay for part B.

They also urged me to go to the physical therapist and do range of motion exercises. I will.

And we talked to the clinic director, who listened to my lovely wife's brilliant and compassionate suggestion, that since we know (all too well) how untreated ALS behaves, why not use that data as the control group, and give everyone in an ALS clinical trial the drug? I added that you would get higher participation.

He said they were already pushing for that, but the FDA or NIH is currently unwilling. There is apparently some such arrangement for cancer, though.

The ceftriaxone clinical trial, we were told, has been postponed because the FDA wants more data on the effect of long-term dosing in animals. The trial is expected to start in September or October.

As a former journalist, I can tell you that I think this would make a good news story. The irony is vast. Maybe some of you have suggestions on how to use this delay as part of an awareness campaign to get the FDA to create a new, alternate, procedure for ALS clinical trials? I mean, we don't have a voice -- because there are so few of us! Because most of us die so fast. The FDA should ask the people who are in their graves now whether those people would be willing to risk taking this FDA-approved drug without more months of animal studies. The FDA seems to be most interested in making sure they have no blood on their hands. But in so doing, they get corpses.

I once again begged for a database to run queries against, and was told that NIH has one called NINDS (NIHNDS?) which is available to the public, though I may have to request access.

We talked about ALS pathways. Some of these are believed to be:

  1. glutamate toxicity

  2. calcium toxicity thought to occur when excess glutamate brings calcium into the neuron

  3. neuro-inflamation (Not gross. It won't show on an MRI)

  4. apoptosis

  5. SOD1 mutation (familial)

Left grip is 42 pounds (38, 42, 40), right grip is 98 pounds (93, 98, 92), left leg balance is 7.43 seconds, and inhale volume is 4750 mL.


Monday, May 02, 2005


Even though he was a grown man, when we first met this neighbor, he seemed like a boy to me. There was an older man, a neighbor I respected, who was really good at working on houses. It was his profession. I paid him, when he would let me, but sometimes he would just come over and help me with my house for the fun of it. This was when I was repairing the dry rot. And at those times he wouldn't let me pay him. When the boy man neighbor heard this, he seemed to get quietly agitated. His eyes kept darting around. I tried to bring it back to my point, that the older neighbor was quite a character. A few months later, the boy man neighbor told me with a smile, and some relief, that they had gotten the older guy to do a bunch of work on their house for free. As if it were some kind of accomplishment. Like he was back in the ring now. The boy man neighbor was in sales. They had to sell their house when the market went sour and he was the last fool. They moved, and later I heard he divorced his wife, a good woman, and dealt this unto their two young kids. It was for some reason I don't remember, but it was an immature, flighty thing, a thing that a boy would come up with.

There comes a point that every seemingly impenetrable edifice of deceit cracks and then rapidly crumbles away. One mark, but not the only mark, of virtue is that it stands the test of time. Like Bill Clinton. A lot of the apparent support for Bush may seem inexplicable, until you really look at it. It's a mixture of stupid people, hateful people, and smart people who are neither stupid nor hateful1, but who have been snared by just the right formula. While there have been signs of weakening in the Bush support, my main reaction to this point has been amazement at the the incredible, enduring nature of his support, even despite losing a war, despite the apparent willingness to let two of the three 'axis of evil' countries go nuclear (while invading the only one that was not about to), even despite putting his foolish monkey paws on Social Security. Still though, I would like to now call out my hunch. My hunch is that this whole DeLay affair is the event that will start the crumbling of the Bush edifice. It's simple enough for even stupid people to understand. There is a lot that is stupid about our national news dramas, so much that someone like myself who loves America cringes at the volume of it. This stupid scandal and the White House's stupid willingness to go to bat for DeLay strums those strings. They're good at reducing complex, subtle issues to simple dramas, now matter how factually cavalier. Here, the Republicans have created for themselves one of those simple dramas over a single individual that they have used so adeptly to build their support. Only this time, they have cast themselves in the losing role. The DeLay issue won't crumble the edifice, but I have the hunch that it is the beginning of the end. (Unless, of course, the Republicans win.)

Left grip is 46 pounds (40, 46, 45), right grip is 92 pounds (92, 91, 92), left leg balance is 5.22 seconds, and inhale volume is 4750 mL.

For a long while I have been "cheating" on the one-legged balance test by allowing myself as many tries as I wanted. Today I'll change the rule to allow six tries.

But rather, the only person smart enough and kind enough to solve my chess puzzle.

Sunday, May 01, 2005


This morning I have that pain in my back at the hip joint, which I am treating with two ibuprofen, plus some cold or allergies, attacking my throat and sinuses. My lovely wife will make breakfast for the family.

Still reading the history of Rome. I wonder if Alexander the Great ever ventured into Italy after his father suffered setbacks there. The answer appears to be: buk! buk-buk! buk-aa-a-aa-awk!

Today's Doonesbury, which I reproduce here without permission, makes a joke about encryption, and in so doing, uses a mere substitution cipher. If this were any form of modern encryption (like, since Caesar) the string "PXAT" would not appear twice even if the same plaintext were encrypted twice. The encryption algorithm would transform the identical string differently. Further, when Mike responds to "PXAT," that would, in turn, be encrypted and would not appear as "PXAT." Of course, if the publication in which you read this did not have the key to unlock the text, Mike would not notice that Zonk's dialogue was encrypted. I guess though, that such technicalities get in the way of the joke, which I enjoyed.

Left grip is 44 pounds (44, 44, 43), right grip is 95 pounds (95, 91, 90), left leg balance is 5.1 seconds, and inhale volume is TK mL.

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