Wednesday, August 31, 2005


Today will be my son's first day in kindergarten. It feels like a special right of passage because, in a way, it's like our little one is being accepted into society as a whole. It's like our little fuzzy nestling has been accepted as normal. Granted, the criteria are very loose, and he would be accepted practically no matter what. But that's an intellectual analysis. The emotional analysis is: Our little child is on his way to becoming a citizen!

I'm not sure I would have gotten that same thrill from a private school.

Tuesday, August 30, 2005

Lefty grrrl

In the big, wide-open internet, where self-publishing implies that anyone is entitled to read and comment, bloggers critiquing other bloggers would seem to be a normal, healthy function. However, it can also give offense. I have been reading the blog of Lefty Grrrl only a short while, and I hope not to give offense, but I do have some doubts about her fiancé's account of a fight he was in. If you're reading this, Architect Boy, know that I respect what I've heard about you in LG's blog, that you are trying to escape the bonds of a knotted past and ascend to the light of a brighter day.

These are just my thoughts, and while the story is suspect in my mind, I acknowledge up front that the story could be 100-percent, entirely true. And my suspicions could be just a factor of how my brain works.

I asked LG about the first version of the fight that she posted on Tuesday, August 23, 2005 ("Fight Night"). It contained a description of a cop talking to some guys after a fight near a bar, and letting them go without checking ID, even though one combatant was comatose and unresponsive. That didn't seem likely to me, and LG says she woke up AB in order to straighten it out. She relates that she originally had the story wrong, and that AB had told her he fled the scene before the cops arrived.

Fair enough. I thought no more of it. But then I woke up yesterday morning thinking about the parts of the story which still arouse my suspicions. Those of you who know me know I am a trusting soul with a keenly suspicious mind.

The fight happened one night when AB was serving as designated driver at a bar. Allow me to offer my excerpted summary of the account AB gave LG. As such, it may contain inaccuracies:

A girl had come up to Jason's friend and they stood at the bar drinking and talking. I guess she held his hand or kissed his cheek or some little form of affection. Her boyfriend saw it happen ... [and] ... got angry at Jason's friend and he recruited his boys and they jumped Jason's friend in the alley as they left.

[Just prior to the attack] ... Jason was ready to leave which was fine by AB. They walked to the car. As they were walking, Jason got a call on his Nextel - it was one of his friends, telling him to come back and help because one of their buddies was getting jumped by eleven guys. So instead of letting Jason go back alone, AB went too.

When they got to the alley behind the club, Jason's friend and his other two buddies were getting worked over pretty badly by eleven guys. AB and Jason jumped in. AB started trying to peel a guy off one of Jason's friends. The guy was drunk and AB succeeded in pulling him off the guy, but he wouldn't let go of AB. AB body-slammed him over and over again, yelling at the guy to just let go. As this was happening, two guys started kicking AB in the shoulder.

AB stopped bodyslamming when he saw police lights. He was still on parole. He and Jason fled the scene before the police arrived.

This account was given to LG by AB at about 3:30 AM the night of the fight, when he came home and she was waiting in his bed, as a surprise.

My doubts are as follows:

  1. Note that we are instructed as to AB's intent: He was leaving, but got drawn into a fight that took him wholly by surprise, but in which he reacted nobly.

  2. When 11 guys confront and attack one guy, his buddies usually stand with him, or at least are watched with suspicion by the 11 guys, to make sure they don't interfere with 'justice.' It is unlikely that one of the guys could have made a phone call. Indeed, by the time AB and Jason get there, the other two guys mentioned are being worked over pretty badly. That the 11 would let one of the three make a phone call is unlikely.

  3. It does not take 11 guys very long to smack down one guy. Only moments are required, even when tough-guy trash talk is delivered along with the blows. A phone call takes a long time to dial, connect, and complete. And it takes some time for Jason and AB to return. The short amount of time required for 11 guys to beat up and humiliate one guy (or three) adds to the unlikeliness that someone would have made a phone call to Jason.

  4. Making a phone call when your buddy is being attacked is not normal. You would tend to try to defend him, and be drawn into the fight, as we are told the other two with him were.

  5. If they thought AB and Jason were close enough to help, given that quick help is required when the odds are 11 to three, they would have shouted, instead of wasting time with a phone call.

  6. The odds of 11 to one, or 11 to three, seem made up to me, as if someone were trying to paint a quick, convincing portrait of a noble cause de guerre.

  7. Given the statistical distribution of body mass in the general population, it seems unlikely that AB and his four pals would have been able to acquit themselves so well at 11 to five odds. Either AB is one huge martial arts expert, or the 11 attackers were slender and effeminate, like me. Maybe one or two of them even had ALS.

  8. The account of AB being able to peel a drunk off of his buddy, but unable to dispose of the drunk, seems unlikely. It also throws into doubt the prowess required of AB in the previous point.

  9. The account of the drunk refusing to let go of AB, as AB repeatedly body-slams him, while AB shouts at him over and over to just let go, seems manufactured to transfer blame to the other guy. This is the sort of lie a little boy tells to his mother. "I didn't want to hurt him, but he just kept coming at me -- even though I told him to just let go!"

  10. The idea that AB would have the time to repeatedly slam a guy ("over and over again, yelling at the guy to just let go") in an 11-to-five conflict is not credible. We are told that some guys kicked AB in the shoulder while he slammed the drunk. At odds of greater than two to one, AB would never have had the time to knock the guy out in the drawn-out fashion described.

  11. And why the shoulder instead of the head, as the slams were being delivered "over and over?"

  12. It does seem credible to me that the drunk wound up unconscious and unmoving. If AB had been in a fight, this is not something AB would make up. While all the rest of the story seems constructed to make AB seem blameless, the limp body arouses concern in LG about a possible homicide, and indicates that AB himself was worried and uncertain about the drunk's fate. The story wholly absolves AB from responsibility for the drunk's fate, and for this reason the condition of the drunk at the end of the story is credible.

  13. AB saw police lights and fled. We are not told that he heard a siren. The time required for passersby or bar patrons to place a call to the police, and for the police to respond, is long (like the supposed duration of the "over and over" body slamming). AB and his four friends would not have lasted that long against 11-to-five odds. Especially not if a sober AB was unable to dispose of a drunk. AB came home under his own power, with no broken limbs.

  14. Why would a cop responding to a report of a bar brawl approach with sirens off?

  15. I don't know how you can just "stop" bodyslamming and exit stage left in the middle of a big brawl. The other combatants may seek to hold your gang to hand over to the cops, hoping to stick you with the blame -- "We saw these five guys beating up this guy, and we just ran up and caught them" -- particularly when one guy is down and appears to be unconscious. AB will likely say that everyone saw the police lights and just fled simultaneously. But since there is no account of a siren, and some had their backs turned, how likely is that? AB is likely to say that one of the 11 called out "Jets! Cops! Let's blast outta here!" That's credible, but convenient.

  16. Note also that the young woman is portrayed interacting with one of Jason's friends. Like transferring the blame to the drunk for refusing to let go, this account safely puts the flirting off on someone else. LG has described AB as hot, as no doubt he is. One wonders who flirted with the woman in the bar.

So the story appears to me as a confused, unlikely account designed to exculpate the teller from blame. Still, it might be true. How could I know?

Here's what I think may have happened:

AB was talking to the woman at the bar, when her boyfriend got upset. He threatened AB, and attacked him. AB reacted to being hit or pushed, and they fought. They got kicked out of the club. The guy found a blunt instrument and hit AB on the shoulder. AB wrested the implement from the guy and hit him over the head with it. The guy went down, and did not move. AB was worried, but two or three of the guy's friends were coming. He managed to flee.

This version can be expanded to include multiple combatants on both sides, but the 11-to-five odds mentioned by AB make me think that, if anything. AB's gang outnumbered the opponents.

Monday, August 29, 2005

Right shoulder

Stiffness and mild pain beginning in right shoulder joint. Also there may be some stiffness in the left joint of my jaw.

OK, here's what I don't get about this new template: When I click on one of the internal links using the '#' sign, it goes to that page but not to that entry. Only if I click on the link again, does it go to that entry. Annoying.

Sunday, August 28, 2005

Good and Bad

After his tour of duty in preschool was up, my son spent two weeks going to a day camp. There he filled up a scrapbook they gave each kid. This image shows him writing down who was bad (Henry, Nick and Tommy) and who was good (Danielle, Julia and Katy). The next page says "Veyre Vary bad: Tommy." There is a frowny face. The page after that says "Vary good: Katy." Katy wrote her phone number in his book. Pretty much every day, my son bugged my lovely wife to let him call Katy. She called, for him, yesterday, and we have a play date coming soon.

Left grip is 32 pounds (24, 31, 32), right grip is 80 pounds (72, 74, 80), left leg balance is 6.1 seconds, and inhale volume is 4250 mL.

Saturday, August 27, 2005


I bought and watched the DVD for "The Day After," which aired in 1983 on broadcast TV. I remember the right wingers being upset about that. I remember that my girlfriend and I and some other college kids watched it at someone's place. One young woman was crying a bit. It seems like so long ago. We're very lucky that our world survived the twin evil menaces of the Soviet Union and Ronald Reagan.

I also got the DVD for "The World According to Garp," which it seemed to me is a rare case of the movie being as good as the book. As I write this I have only seen the first scene, in which Jenny brings her baby home. There is a reply she shouts from the lawn, which is partially obscured by the surf noise. I searched the web for the complete text, but didn't find it. It then appears that I have the honor of being the first.

Her father asks her which side of the war the father of her child was on. As best I can make out, she shouts back from the lawn:

"He wasn't on any side. He was flat on his back in the hospital. One night when he had one of his usual erections, I got on top of him and inserted it in me. He ejaculated almost immediately, and as a result, I got a wonderful baby!"

Let all future web searchers thank me.

Left grip is 33 pounds (26, 33, 33), right grip is 78 pounds (75, 78, 75), left leg balance is 6.57 seconds, and inhale volume is 4500 mL.

Friday, August 26, 2005


This Braingate thingy looks promising. Even more so because I believe that it could be driven by cognitive images not related to the motor pathways of the brain (which eventually die in ALS). So a guy could open a door by thinking about ... beer. In this image, the guy is using the wrong browser, but I could fix that. I don't want any Microsoft products in my brain. Heaven forfend!

Left grip is 30 pounds (30, 29, 30), right grip is 78 pounds (76, 78, 77), left leg balance is 5.9 seconds, and inhale volume is 4300 mL.

Thursday, August 25, 2005

21st Century shoes

Yesterday I got me some shoes with no laces. Slips-ons. And a shoe horn. My Subaru has finally broken. The little plastic fang that keeps the all-weather mat down has detached. Good things this car is still under warranty.

I thank all those on the ALS discussion board who responded to my problem choking on water when taking pills. Last night I tried the apple sauce suggestion and all the pills went down without a cough! Only problem ... I understand apple sauce is constipating (eek!). Tonight I try the same trick with yogurt.

Wednesday, August 24, 2005


The PT says my range of motion on the left arm has improved a lot since we started three weeks ago. Some motion has improved 14 degrees, some 21 degrees, and some other 25 degrees. One has improved 5 degrees but it was already almost perfect anyway.

So that's good. The main thing is, I think we started only a week after I noticed the stiffness. She said I should now increase my duration for each motion to 30 seconds.

Tuesday, August 23, 2005

Mirrors and batteries

Some drivers like to set the side mirrors on a car so that plenty of the side of their own car is in view. I like to joke that the person wants to check whether the car is clean or dirty.

I used to do this myself, when I started to learn to drive as a teenager. My motivation was to give myself a frame of reference for what I was seeing. But it's less safe.

Picture a searchlight shining into the darkness. A narrow beam allows you to see less, and a wider beam allows you to see more. Similarly, when you angle the mirrors inward to give yourself a view of the sides of the car, you narrow your field of view.

The rearview mirror lets you see back, and the side mirrors let you see ... to the sides. The idea is to give yourself a view of that vehicle lurking behind you and to the side.

Alas, I must now resort to a crude drawing:

If you still don't understand, then hang you.

For years, my lovely wife was in the other camp. She just did not agree with me on the mirrors issue. This is the sort of thing that 80-year-old spouses argue about to their death beds.

Then we got a mailing from the insurance company, and one of the things in there was a tip sheet on how to set your mirrors. I began to notice that when I drove the cars, I no longer had to adjust the mirrors to widen the view. I assumed that my lovely wife had forgotten to narrow them.

Then I found the tip sheet and triumphantly showed it to my lovely wife, expecting her to be unimpressed. It turned out, however, that she had already read it and had been adjusting the mirrors for a wider field of view.

This is just one of the things I admire about my lovely wife. She is open-minded.

It was that same week that she finally got tired of all the batteries in the refrigerator and took them out. I patiently explained that the refrigerator makes the batteries last longer in storage by slowing down chemical reactions that enable discharge.

Then I went and looked on the website of a battery manufacturer. They said that room temperature is fine for battery storage, and that refrigeration is not needed. It can, in fact, slow down battery responsiveness when the battery is still cold. It's not recommended.

My lovely wife was right, and I told her so. The moral of this story is: No matter where your marriage is currently, remember that it can never be as good as ours!

Monday, August 22, 2005

Animal ALS?

The scientific method would mandate an investigation of what ways animals do or do not get ALS. The differences, or similarities, help us build our theory about the disease. Genetically engineering a SOD-1 mutation into mice is not impressive to me, in terms of ALS research.

I checked the index of my 1998, first-edition copy of Mitsumoto's book on ALS. Chapter 17, pages 285 to 299, says that naturally occurring models are mice, dogs, and horses. The authors point out that the apparent similarity to human ALS could be false, and that at least in the case of the Wobbler mouse, it's clearly not ALS. The canine model (HCSMA) is inherited, and features other dissimilarities which (in my view) make it nonequivalent to ALS. The equine model, in horses, appears to be the closest animal model of ALS, as the symptoms are similar to those in humans, and it is non-inherited. In 1998, they said this model has been only recently identified.

But, the authors state, "No naturally-occurring model of MND is entirely adequate as a model for ALS."

Humans have been observing primates both in the wild an in captivity for long enough and in great enough quantity that I suspect that someone would have by now noticed primate ALS.

And as Hopeseeker on braintalk ALS points out:

For instance all cattle in the U.S. (and would think the UK is even more stringent) are supposed to be monitored for signs suggesting Mad Cow. Any cows identified as possibly having this could be checked for MND if they do not have Mad Cow. These are generally "downer" cows with clear impairments of some kind, so if they turn out not to have Mad cow, perhaps MND may be the cause of some of their problems. Older cows and pets should be more likely to show signs of MND.

My two-minute hunch is that animals do not naturally get sporadic ALS, only humans do. Therefore the theory about human ALS is mistaken; It's not a function of motor neurons per se (e.g. length, metabolic work load, etc.), otherwise we would have seen it in the billions of well-loved domestic animals that have lived with us over the centuries (e.g. horses and dogs).

It's not a function of absolute age, either, since Lou Gehrig was pretty young when he got it, and I was only 41 when diagnosed, and there are the rare individuals who get it in their 20s and 30s.

If we're going to implicate modern toxins (which are clustered in time and space toward the developed world, and which would have imposed a geographic distortion on the supposedly sporadic nature of the disorder), then keep in mind that household pets (dogs and cats) are exposed to all the same toxins we are, including reality TV.

I think it's something specific to humans.

Sunday, August 21, 2005

My opinions...

The greatest fiction writer in English of the 20th century:

Ernest Hemingway. No contest. The champ. And for those of you who haven't read him, or who read The Old Man and the Sea in high school, he was, no, not macho, but rather very sentimental, more along the lines of the feminine sterotype, and no, he didn't use short, simple sentences all the time, but is often very convoluted and complex, just like Gertrude.

The greatest poet in English of the 20th century:

Ezra Pound. Sure, he was a fascist. That doesn't mean I support fascism.

The greatest humorist in English of the 20th century:

This one is a toss-up between Hunter S. Thompson and Erma Bombeck.

The greatest journalist in English of the 20th century:

Seymour Hersh.

The greatest advocacy journalist in English of the 20th century:

Theodore H. White.

The greatest actress in English of the 20th century:

Maryl Streep.

The greatest actor in English of the 20th century:

Ronald Reagan.

The greatest musician in English of the 20th century:

A toss-up between John Lennon and Joni Mitchell.

The most successful megalomaniac psychopathic national leader of the 20th century:

Joseph Stalin.

Greatest athlete of the 20th century:

Carl Lewis.

Greatest national leader of the 20th century:

Martin Luther King, Jr.

Saturday, August 20, 2005

Dementia, my avocation

Being on an anti-dementia drug (Namenda) to suppress the neurological symptom of uncontrolled laughing did make me wonder: Would I still be able to write poetry? As many people do, I believe that creativity is part madness. I don't write every day or even every week, and my poetry usually arrives after months of not writing at all. It's not something I strive for. Though I do welcome it. Given the infrequency with which I write, there was little empirical way to test the effect of the drug. Fortunately, several weeks ago I wrote a nice batch of poems, and then a few weeks after that, another batch. I usually write something and then let it sit for months or years before looking at it again, but I'll violate that rule and show you something I wrote last month. You can tell me if it's demented enough:

unpainted concrete floor
in subterranean toilet room
infinitesimal webs

the small, pale
spider darts to wrap its prey
a smaller spider and black

here I remind myself that though
spiders as an expression of talent and ingenuity
are stunning

one must not wonder what a spider thinks
upside down in its web, waiting;
for we know they do not

my muscles tremble as my weakness grows and departure
though welcome would be sad and so
whatever love or malice bids the mindless spider be,

that miracle of fierce blind selection plus time or god,
will not relinquish that my stricken form can walk
and so I do walk, slowly,

up the stairs
the indignities of my flesh

July, 30 2005

Left grip is 37 pounds (30, 34, 37), right grip is 85 pounds (74, 85, 72), left leg balance is 6.24 seconds, and inhale volume is 4250 mL.

Friday, August 19, 2005


We went to a camp for families with kids. It had uneven, bumpy, sloping ground covered in sand, rocks, and tree chaff:

It was cut by a stream crossed in one case by a plank bridge with rope railings. I found myself evaluating the terrain and planning the traverse across it, like a Mars Exploration Rover flight crew.

There were kids of all ages running everywhere. The dining hall was noisy and the little ones would come at me in Brownian fashion from all sides, while the adults were coffee Frankensteins. Once a little fat kid with a crew cut accidentally kicked up on the back of my heel.

I don't think you could devise a more hazardous leisure setting for someone with ALS, sans explosives. I spent five days thinking Don't fall. Don't fall. Just ... don't ... fall! It's a miracle I didn't.

My lovely wife and two sets of friends we'd planned the trip with handled all the kid entertainment, so that I didn't have to do any of it. All I did was a little enforcement parenting: making sure my son had a couple of showers, washed his hands, and the like. But my contribution to parenting was all peripheral and episodic.

And a good thing, too, since supervising a preschooler in the natural pond, pin-the-tail-on-the-donkey, hiking, and archery all contained hazards for me. I had enough to deal with just walking to and from the bathroom and dining hall, getting dressed, putting sunscreen on, taking pills, and fitting in my physical therapy exercises. Nonetheless, I did plenty of reading. And oh, there was the constipation, too. The Namenda is to blame for that, and while the results of the first Citrucel were good, taking just one a day is not forfending the Evil One. I started taking three per day as of last night.

In an effort to vanquish the Evil One, at camp one night I took the harsh chemical laxative pills before bed. When those failed to produce, in the morning I took more. When those failed to produce by bedtime, I took another dose. I spent a miserable day and a half, making many futile visits to this commode:

You can see that there was barely enough room to close the door. It smelled, and there were spiders. It was tilted to the right, like on a plane making a permanent banking turn. Once the agon was behind me, and our long national nightmare was over, I went around the corner of the mens room and discovered the promised land:

Next to this miracle commode, there was an equally spacious, clean and modern shower. Needless to say, I visited the modern toilet reverently, and used that shower to good effect.

The kids had a fantastic time, since the camp is all about kids, which I realized on the first night, while lying awake, listening to the amplified Hip Hop coming from the party by the pond until 9:30 PM.

Oh, and it rained for a whole day.

Left grip is 34.8 pounds (33, 34.8, 32), right grip is 884 pounds (84, 84, 75), left leg balance is 4.14 seconds, and inhale volume is 4250 mL.


Sunday, August 14, 2005


[I'll be out of town for a few days, and should resume blogging on 8/19.]

It was a heck of a drive. I was assigned there for over two years, writing software for them. Let's call her Lucille. She loved conversation and a good laugh. She was always laughing and having a good time, making people feel good. She was also serious, and a hard worker. She did so much detail work that sometimes I felt bad for her. She never seemed to feel bad.

She liked Star Trek, which in my experience is a near-universal attribute of Cool People.

What I didn't know at the time was that she had been diagnosed with a rare brain cancer. She must have been about 44 when I met her. After two years, I moved into another role within our company, and stopped going to their company.

The years went by. She came to our wedding. She loved the pictures of our kids that I sent around.

Later I learned about her diagnosis. I spoke with her about it. She did really well, for a long time, with what was supposed to be a sudden death. She came to my company for a training, and stopped to have lunch with me.

She was engaged. She told me this story about driving down a mountain in the dark with her new man. He said he wanted to marry her. She reminded him that she might die soon after they married. She asked him if he was OK with that. They were driving in the dark. "That's OK," he said quietly.

When she told me this story in the restaurant, I started tearing up and had to ask her to stop. I don't think it was an early symptom of ALS.

When I was diagnosed with ALS, I sent an email to various people. She wrote back:

You voiced the same feelings I had when first diagnosed. I thank God my children are old enough, 28 and 25, to understand what will happen. Not that it will not make their pain any less when I go.

Not to be too personal, but do you believe in a higher being or after life?

I wrote:

I know it sounds trite, but it's true that everyone is in our same position. It may take them longer to get there, and yet most of them act like they don't know it.

I am so glad you were at my wedding.

No, your question is not too personal. But in return, I hope you won't be offended by my answer. I feel that there is a benevolent mercy inherent in the universe that is more subtle and profound than any of us are capable of understanding. Something that by definition is a mystery and both invests us and enables us to transcend. I wouldn't call it a Being, but just the fact that I am choking on my tears right now with feelings for you, and not for myself, betrays some of the nature of it, which is Love. Likewise, I think the afterlife, if it exists, will be both better than, and completely different from what human minds have tried to describe. For someone who is churchgoing (and I don't know if you are), this may all sound frustratingly vague. But you asked, so I answered.

To my knowledge, that is the last email I ever sent her. I like the fact that it conveys that I love her. She died a few days ago at the age of 50, and her husband sent out an email. There was a follow-up email about the visitation and time of sharing.

It was over an hour of driving, and I don't do so well sitting down for extended period without a chance to get up and move around. Plus the tie and the tight shoes. I decided to wear a suit so that I wouldn't be underdressed. I have two suits, green and black. I wore the green one, thinking that Lucille would like Spring colors, rather than funereal ones.

I thought I was going to a memorial. On the way down, I worried that I would disrupt the event with sobbing and wailing due to the ALS disinhibition. So, when I got there, I sat in the car and wrote a note on a piece of paper:

"Please excuse me -- I have a neurological disorder (ALS) which causes uncontrolled crying and laughing. I don't mean to cause a disturbance. I'm sorry."

I was the first one there. From the entrance of the room, I spied a coffin, at the other end. Her little bangs were the only part visible. I had expected a memorial, sans corpse1. But this was a visitation, instead.

My note came in handy when I tried to speak to her mother, and to her husband. I was squeaky and often sobbing. If it hadn't been for ALS, I think I would have been calm and respectful, with a few wet tears, but no sobbing.

I sat towards the back and tried to control myself. I was glad that I wasn't laughing. I didn't feel very sad, even though I was almost sobbing. Mostly I felt happy for Lucille and glad to have known her. To control my sobbing, I pictured Worf, the Klingon from Star Trek, sitting in the pew and berating me: "This is no time for tears! When a Klingon dies with honor, we celebrate!" The image of Worf shouting at me in the pews, plus some deep breathing, helped me get a grip. Truly, Lucille had completed her life in an honorable way, and there was very little silliness to my mulling Star Trek theology in a chapel with a great big crucifix on the wall. I knew Lucille would have chuckled at the story, if I could have told her.

I was overdressed. There were only eight of us there, and everyone else was in casual clothes. Her son was in jeans, t-shirt, and tattoos. Just like me at the wedding of a friend those years ago, I think he knew that his mom knew he would be uncomfortable in fancy clothes, and that she wanted him to relax and be himself. The black, soft-soled shoes were the sign that he was dressed up. Ordinarily I think it would have been basketball slippers.

Lucille's mom was very kind, and patted me on the back while I tried to control myself. I told her that her daughter was fun, and so nice, and happy. Her mom said that Lucille had suffered a lot at the end, due to the drugs and chemo. I could tell that her mom was very kind and sweet, and I managed to squeak out that I could tell Lucille had a very good mother. "Thank you," she said. "She came to me, and I had her as my own. It's hard to believe that she is gone. But you know what? She is not suffering now. She is at peace."

It bothered me that Lucile's mom would wind up comforting me at Lucille's visitation, instead of the other way around. But I did manage once to pat her on the back.

I spoke (squeaked) some with her husband, and managed to tell him about the time she'd had lunch with me and told me about their conversation in the car at night, plunging down the mountain in the dark.

Which reminds me of a piece by some 20th Century poet. And I may misremember the lines, but I think they go:

I beg my life to lay me down at last
gently, if possible, or fast,
the way a horse, plunging into darkness
kicks a stone out of its path

No one else was in the room with the coffin by this point, and I hadn't seen her body yet, so I limped down there as my last step before driving home. I notice that I limp more when emotional -- anything from being annoyed by a clerk in a store to Lucille's death. As I walked toward her coffin, it was like my left leg was an oar, and I was rowing with it.

When I saw her body, it didn't upset me as much as I feared it might. I could tell that she was gone. The Lucille we knew was not lying in that coffin. She had escaped.

Any observer would have only seen my back, and would have thought I was putting my hand to my heart when I gave what I thought was a Klingon salute and muttered the Klingon K'plagh!

Loosely translated, this means "Well done!"

Lucille would chuckle at this phrase, and deliver it with her goofy smile, which is why I use it here.

Saturday, August 13, 2005


We done gone ta thet air ALS clinic they got, and the doctor thar she said tha Namenda? it make you constipated. Ah done figger, huh! that'd explain them times ah battled tha Evil One recently. Still, ah got me some Citrucel, and been takin' one a day. So far, tha reezults are good, but you don't wanna hear about tha reezults.

Also she said that one reason I feel that my voice is weaker is that air is escaping through my nose, due to the loss of muscle control in my palette.

My Forced Vital Capacity was all over the map from 92 down to 70, because the guy yelling encouragement at me, and getting upset when I asked him not to, threw off my game. They entered the results as 88 but I take it as a 92. Last time there, in May, I scored 96. I do have the shoulder problem now, as well as twitching of the muscles on both my left and right rib cage, so I conclude that the disorder has progressed to my trunk, and should take some points off of my FVC score. But I wonder if I can get someone else to do spirometry on me next time. I hope so. The respiratory therapist has been able to get high readings from me.

Friday, August 12, 2005

Details, details

WASHINGTON - The Sept. 11 commission knew military intelligence officials had identified lead hijacker Mohamed Atta as a member of al-Qaida who might be part of U.S.-based terror cell more than a year before the terror attacks but decided not to include that in its final report, a spokesman acknowledged Thursday.

I remember, as I read the report, reminding myself that it was a publication of the US government, not an exposé. I was conscious that there were topics being avoided, and things we weren't being told. But wow, this is a big one.

Thursday, August 11, 2005

Oklahoma and BUSH!

I had another satisfying game with a Bush backer the other day. As my chess rating sinks lower and lower, the Bush backers I encounter in the weeds get more and more verbally abusive.

The game progressed to this point as shown, when I had pinned his knight on the king.

I issued my standard greeting.

brainhell: I voted for Kerry and am playing from California. You?

codyroberson says: oklahoma and BUSH!

He brought out the black bishop to check me, so I blocked with my own bishop.

Then he wanted to castle, which gave me his bishop.

codyroberson says: how big of a kerry supporter are you?

brainhell: I voted for him

At this point my initial advantage evaporated when the Bush guy performed a very nice trick and got my bishop.

Then things started to look grim for me. The pawn is doomed:

codyroberson says: you one of those hippy liberal douches?

I figured I was going to lose the game. But I typed in my reply, prepared to send it at the end. Things progressed to this point...

And the Bush guy made this move:

And that was that, so I sent my reply to his question.

brainhell: yes i am

{Game 527 (brainhell vs. codyroberson) codyroberson checkmated} 1-0
Blitz rating adjustment: 949 --> 955

Left grip is 34 pounds (31, 34, 32), right grip is 83 pounds (75, 79, 83), left leg balance is 6.67 seconds, and inhale volume is 4450 mL.

Wednesday, August 10, 2005


I assert that images uploaded onto Flickr can with great reliability be placed in one of the following categories:

  1. Newborn

  2. Baby

  3. Toddler

  4. Kids

  5. Pet animal

  6. Architecture

  7. Sky

  8. Landscape

  9. Seascape

  10. Party pics

  11. Beach fun

  12. Historical

  13. Pool fun

  14. Portrait

  15. Conference

  16. My sport

  17. My hobby

  18. Street scene in my country

  19. Street scene in another country

  20. My school friends smiling

  21. Me and a school friend smiling

  22. A statue

  23. A wild animal, or insect

  24. A dead wild animal or insect

  25. Trees

  26. Plants (including flowers)

  27. An artful repeating pattern

  28. Camping

  29. Album or book cover of published work

  30. Group shot

  31. Soldiers

  32. Computers or peripherals

  33. Icons

  34. Sexy advertising photos of people or products

  35. A band

  36. A dance club

  37. My beverage

  38. My food

  39. Words

  40. Image of my feet

  41. Image of the photographer, using a mirror

  42. Image of the photographer, using extended arm technique

  43. Image of the photographer and a friend, using extended arm technique

  44. Paintings or cartoons

  45. Showing the middle finger

  46. Parade or festival

  47. Porno

  48. Abstract or surreal images created using a computer

  49. Political leaders

  50. Vacation

  51. Air show

  52. Computer screen (including error messages)

  53. Someone I'd like to have sex with

  54. Someone I did have sex with

  55. Historical figures

  56. Costume fun

  57. Indigenous peoples

  58. Quaint or cute foreigners

  59. People I photograph without their knowlege on the streets (usually women)

  60. Someone lying down

  61. Someone completely unkempt

  62. Artful creation

  63. Pasted this into the photo

Left grip is 35 pounds (31, 35, 35), right grip is 81 pounds (81, 79, 78), left leg balance is 8.03 seconds, and inhale volume is 4400 mL.

Tuesday, August 09, 2005

Babe, I'm Gonna Leave You

I've always despised my bank, despite being a loyal member since 1982. I've always wanted to dump them, and now I am taking steps.

My hostility to my bank began when I first came to college, and they lost the check from the old branch. This was way back before the internet, before electronic transfers and ATMs, when it actually mattered where your branch was.

When they found the check again, I had the manager write me a check and close the account. Boy was he steamed. I opened one in a rival bank.

But then they ticked me off too (not sure why), and I moved back to the original bank brand, because they were the only one near where I moved to. I think that was 1984, but the card says I've been loyal since 1982. I wouldn't put it past them to have messed that up too.

I worked for the worst, most weasely, dishonest, smarmy, arrogant boss ever in the early 1990s. It turned out that he had worked for my terrible bank.

Their staff have always been overbearing and arrogant on the phone. In person they are suspicious and sneaky. In 1995, I financed my first car through them, and was in a hurry. The delighted lady kept adding a half percent interest every time she got a new fact from me. There may have been an extra half percent because I have a vowel in my name. It finally came to 14.5 percent.

I paid it off in six months, just so they wouldn't get much interest income out of me.

Then at one point, they cut off my access to my account when I told them I didn't want the check card feature of the new ATM card they forced on us without asking. You can read all about it, but you'd be better off to skip it:

March 8, 1998


This is a letter of complaint supplementing to two complaints I registered with your officials by phone.

In February I requested a new ATM-only card to replace my Express ATM & Check Card. My access to your ATMs was blocked when my Express ATM & Check Card was terminated. I was not informed it would be terminated. The action appears to be a retaliatory response to my request to register a complaint about service.

Point #1: Well Fargo officials inform me that it is the policy of the bank to immediately terminate all functions of an Express ATM & Check Card when a customer requests an ATM-only card to replace their Express ATM & Check Card. If this is your policy, it is unnecessary and highly inconvenient to the customer as it deprives them of access to their funds until the new card arrives.

Point #2: A service agent identified by you as "Marisa" gave me very poor, confusing, and frustrating service when I called to request a new ATM-only card to replace my Express ATM & Check Card. If you have a complete rather than fractional recording of this call please retain it and review it. I asked her for a new ATM-only card to replace my current Express ATM & Check Card. That in itself is sufficient and clearly understood. The call should have ended there, with "We will do that. Thank you for calling." No other discussion needed to ensue. Instead, she led me repeatedly down a pathway regarding whether I still had the "old" card, and whether I could use that. This was unnecessary and confusing. Since I was requesting a new card, the "old" card, in my mind, was my Express ATM & Check Card. After repeatedly and pointlessly dragging me through discussion of the "old" card, I finally realized she thought I still retained the ATM-only card which Well Fargo replaced when they sent me my Express ATM & Check Card. It was wrong for her to assume I had chosen not to follow the bank's recommendation that replaced cards be destroyed.

Point #3:
After requesting to register a complaint with the supervisor of "Marisa," and having done so, my access to your ATMs was blocked when my Express ATM & Check Card was terminated -- without any agent of yours informing me this would happen. This appears to be a retaliatory action on the part of "Marisa," a punitive response to my complaint. The supervisor and "Marisa" both had the responsibility to inform me the ATM access would be canceled, and neither one informed me. It is a very serious matter when a bank customer is denied access to their funds due to personal animus on the part of the bank's agents. Banking requires the highest levels of integrity and you have the responsibility to make sure these agents cannot commit this sort of act again.

Please inform me in writing of all further avenues of redress that are available to me within your process. Let me know the ID number or code you have assigned to this matter. Please inform me in writing, immediately, what you expect to be the date of your resolution of this matter and the date on which I will be informed. Please inform me in writing of the full and complete details of your resolution of the matter.

In response to this letter I received nothing. I went to Europe for a month. When I got back, I checked my PO box, and there was a box in there with a nonspecific apology letter, plus apples, peaches, cheese, and other things which had rotted in the box during the time I was away.

They continued in this fumbling, arrogant vein for years. But now my revenge is at hand. You see, E-Trade, which has been my broker for many years, and which has always offered me excellent customer service, has this thing called "E-Trade complete," whereby you can write checks against your E-Trade brokerage account, and use their debit card as a credit card, and use it at ATMs of any bank -- and E-Trade will automatically refund the ATM fees, up to five per month. I don't use the ATM five times per month, and with the amount E-Trade allows me to withdraw being 2.5 times that allowed by my bank, it should not be an issue.

I've been writing the checks for a while now, and when the debit card came, I made several online purchases successfully. Friday I used it at the electronics store to buy several things, including a new Canon Powershot A520. Saturday used it to get cash from the ATM -- at my bank.

We shall see how automatic that ATM fee refund is. I'll try depositing checks with E-Trade by endorsing them "for deposit only" and mailing them in. If these last two things work out well, then I'll write a big check from my bank to E-Trade and zero out the bank account.

I have been thinking about writing them a letter explaining how much I despise them, and gloating about leaving. But then again, just doing it silently might be more satisfying. What do you think?

Left grip is 33 pounds (30, 33, 31), right grip is 82 pounds (80, 81, 82), left leg balance is 4.93 seconds, and inhale volume is 4450 mL.


Monday, August 08, 2005


WASHINGTON - Secretary of State Condoleeza Rice says the insurgency in Iraq is losing steam as a political force, even as Democratic congressmen warned Sunday that violence jeopardizes plans for withdrawing some troops.


"If you think about how to defeat an insurgency, you defeat it not just militarily but politically," she said, adding that she believes the insurgents are "losing steam" politically.

Three to six months from now she'll be saying that the extremists and terrorists have lost even more political steam: "They're highly unpopular. The fact that they're killing more and more people all the time reflects their desperate attempt to use violence to compensate for their political defeat. Soon they may reach levels of unpopularity akin to those of Saddam Hussein when he ruled the country."

"Nobody liked him," she added.

Sunday, August 07, 2005


I'm not sure whether many Americans know that Islam's Koran is basically version 3.0 of the same Bible they know. Islam is not a bizarre worship of vultures and demons, but rather, tells the same stories, from Abraham on down, through Mary and Jesus etc. Islam, like Christianity before it, tries to correct the mistakes of the Judeo-Christian faith of which it is a part. If that fact were known, it might lead to more peace and understanding. But given the current political climate, I think it might lead to immediate air strikes against Mecca.

Left grip is 35 pounds (31, 28, 35), right grip is 80 pounds (71, 80, 70), left leg balance is 8.91 seconds, and inhale volume is 4400 mL.

I wanted to go with my daughter and my lovely wife on a tricycle walk today, but my legs were too tired. That makes me sad, but I'll get over it by being with them when they get back.

Saturday, August 06, 2005

Physical therapy baseline

I started doing the PT range-of-motion exercises yesterday, and here is my baseline for future comparison. In the shoulder flexion holding a stick while lying on back, I can get the left arm to about 2 o'clock and hold it for 10 seconds. I do this three times, and it's 'painful' enough that I am happy to stop after three. The instructions are to do it three to five times for 10 to 30 seconds.

The shoulder circles I do twice for 10 repetitions with no problem. The instruction is to do it two or three times for 10 reps.

In the standing shoulder horizontal abduction with stick, I do three reps to full extent at 10 seconds each with little discomfort. The instructions are to do three to five reps for 10 to 30 seconds.

In the lying down shoulder abduction with stick, I do three reps for 10 seconds, getting the left arm in line with the shoulders, with 'pain.' I'm glad to stop. The instructions say to do three to five reps for 10 to 30 seconds.

In the shoulder external rotation while standing in a doorway I do three reps for 10 second each and the left shoulder feels a bit tight but doesn't give 'pain'. The instructions are to do three to five reps for 10 to 30 seconds.

In the shoulder external rotation in a corner, I do three reps of 10 seconds, with 'pain.' The instructions say to do three to five reps at 10 to 30 seconds.

Yesterday I bought a Canon Powershot A520 camera (4.0 megapixels). It seems good.

Left grip is 35 pounds (30, 35, 34), right grip is 83 pounds (83, 81, 78), left leg balance is 8.76 seconds, and inhale volume is 4300 mL.

Friday, August 05, 2005

7-29-05 blood work

I just bought Bonnie Riatt's "Angel from Montgomery" from iTunes. That's an important one to have.

I started the riluzole again, yesterday morning. This morning I had very little of the ritual leg spasms. Probably coincidence.

Because I was going to try the riluzole again, I needed to check my bilirubin and white blood cell count levels. Here are the results of the lab work:

White cell count: 3.4 thous/mcl, normal: 3.8-10.8
Red cell count 5.58 mill/mcl, normal: 4.2-5.8
Hemoglabin 17.3 g/dl, normal: 13.2-17.1
Hematocrit 49.5 %, normal: 38.5-50
MCV 89 fL, normal: 80-100
MCH 31 pg, normal: 27-33
MCHC 35 g/dL, normal: 32-36
RDW %, normal: 11-15
Platelet count 238 thous/mcl, normal: 140-400
MPV 8.3 fl, normal: 7.5-11.5
Neutrophils 45 %, normal: 40-75
Lymphocytes 43 %, normal: 20-45
Monocytes 9 %, normal: 0-12
Eosinophils 2 %, normal: 0-6
Basophils 1 %, normal: 0-2
Absolute neutrophils 1.5 thous/mcl, normal: 00-00
Absolute lymphocyte 1.4 gaf/plap, thous/mcl normal : .85-3.9
Absolute moncoyte 0.3, thous/mcl, normal: 0.2-0.95
Absolue Eosinophil 0.1, thous/mcl, normal: 0.015-0.5
Absolute basophil 0, thous/mcl, normal: 0-0.2

Glucose 72, mg/dL, normal: 100-125 non fasting
Bilirubin 2.3 MG/DL, normal 0.2-1.5
Urea Nitrogen 15, normal 7-15
Creatinine 0.9, normal 0.5-1.4
Calcium 10.3, normal 8.5-10.4
Sodium 140, normal 135-146
Potassium 4.1, normal 3.5-5.3
CO2 27, normal 21-33
Chlorine 99, normal 98-110
Protein, total 8.1, normal 6.0-8.3
Albumin 5.2, g/dL, normal: 3.5-4.9
Globulin 2.9, normal 2.0-3.9
A/G Ratio 1.8, normal 1.0-2.5
Alkalin Phosphotase 45, normal 20-125
AST (SGOT) 27, normal 2-50
ALT (SGPT) 26, normal 2-60

Thursday, August 04, 2005

Laughter diet

I met this week with another guy who has ALS. His cluster of paradoxical and non-conforming symptoms is not the same as mine, but it's the same cluster of paradoxical and non-conforming symptoms. This ALS thing appears to hit us all so differently. For instance, he does not have a problem with lability.

For my own part, I have felt in the past couple of weeks as if I were on the laughter diet. What happens is that, at the dinner table, my kids are just being kids. But they say and do things which tend to make me choke when I am trying to chew or drink. They're not being bad, they're just being kids. I'm not suffering those fits of uncontrollable laughter, either, but when the danger of choking is high, and my kids start doing wacky things, the pressure alone can make me start to smile or chortle. That's not good when you have to swallow.

I wind up wheezing and gasping and fighting for air once each day, it seems to me. Monday night's attack was a bit scary. It scared my son too, "Mom, Dad is choking!" he said, as I gagged in the sink. One of the things that I think is great about that kid is that he really cares when someone else is in distress. You can see the love in his face. He has empathy.

But he makes me laugh. What often happens is that I just stop eating, in order not to choke, or I push my plate away thinking I'll finish after they're in bed. By that time, however, I'm so tired I just want to take my pills and go to bed. It's the laughter diet. And that's not good, because I'm naturally skinny and I don't want to lose weight.

I can't/shouldn't tell a kid: "Don't do anything at the table that might make Daddy choke."

Maybe a program of aggressive snacking is called for, so that dinner is just a cap. But I'm not sure I can keep that up, nor would the food be any good. Hmm...

I took the first riluzole this morning at about 9:00 AM yesterday, having taken the Namenda at night per usual. I felt like lying down, but I often do at that time in the morning. I forced myself to stay active, had a snack, and then felt fine. My lovely wife points of that I was taking Namenda during the ceftriaxone infusions, and those were supposed to inhibit glutamate, and there was no problem. She's smart. That's why I married her. That, and she can catch.

Left grip is 34 pounds (29, 29, 34), right grip is 81 pounds (78, 81, 77), left leg balance is 6.03 seconds, and inhale volume is 4450 mL.

Wednesday, August 03, 2005

Physical Therapist

Last week I was made a point to mention to my lovely wife, in front of my kids, that I'd made an appointment with the physical therapist. I was also pleased to tell my son the other morning that I was going for a blood test.

My lovely wife and I agree that this kind of thing is good for these reasons:

  1. It reminds the kids that the issue is still there and has not gone away.

  2. It conveys that we are taking steps to address it.

  3. It conveys that it is OK to talk about it.

My son, who didn't ask much about the drawing I did of my nerves not sending the signals correctly to my muscles, or about the blood test, fortunately did ask, about the physical therapist.

"Dad, why are you going to the physical therapist, instead of them coming to you?"

I knew he was thinking of his maternal grandfather, who has serious mobility issues due to an ailment.

"I'm going so they can help me with my limping. I go to them, because I can. Your grandfather has trouble getting around, so they come to him."


He could have asked more questions, but I consider the mere discussion to have been a victory.

Left grip is 33 pounds (32, 31, 33), right grip is 85 pounds (85, 83, 84), left leg balance is 7.25 seconds, and inhale volume is 4450 mL.

Although the data for left-leg balance duration is erratic, there is one quick way to visually assess it: Plot a curve using the exceptional peaks, and you'll see it descending.

I went to the PT today and got assessed. She gave me some ROMs to do for my left shoulder.

Tuesday, August 02, 2005


Status update: I've been having increased night spasticity for a couple of weeks, so that I wake up kind of sore, as if I'd been clenching my muscles all night. There may be some teeth gritting too, as the jaw is sometimes sore. The neck-shoulder area can be sore too. I still have that small pain on the right side. There is some satisfaction in clicking my teeth together on waking. I also like to moan a bit when rolling over or repositioning. Not in pain, but just for some unknown reason.

Also, the right shoulder joint is stiff and can hurt when held in certain positions. This has been going on for a few weeks as well.

And the muscle on the back of the neck, the one that hold up the head, has been twitchy for the past couple of days.

If you're taking fish oils supplements for the Omega-3, you might want to make sure that you're not also getting concentrated mercury and other poisons. The Environmental Defense Fund has examined the purification process used by fish oil producers, and ranked them at this site.

Yesterday's poll results are in. 63 percent of respondants want Hillary, 19 percent want "Other," 13 percent want McCain, and 6 percent want Kerry. 46 percent expect McCain, 31 percent expect "Other," 16 percent expect Hilary, and 6 percent expect Kerry.

Monday, August 01, 2005

A man, a plan...

This quip has been floating around on the internet for a while, but I just encountered it: "What's the difference between Vietnam and Iraq? George Bush had a plan to get out of Vietnam."

The Bush Administration is now declaring their intent to bug out of Iraq with their tail between their legs. It will be a bug out, but they'll call it a dignified victory, mission accomplished, freedom on the march.

I was pretty sure that was coming, and I'm not so sure about this next part, but we might even see a sort of pre-abandonment of the president. People who had been saying on '04 that he was such an able leader may find it convenient, as '08 approaches, to say that everyone knows his faults, and maybe one of them was to be too trusting of his subordinates, yes, too loyal. And they made lots of mistakes, true, and combined with Democrat Party intransigence, let us fail in Iraq.

Expediency has become a culture in American politics, and facts are no obstacle to faith, so they may look at their lame duck as the next election approaches and find it clean and tidy to just bin all their troubles in a wad by binning him. We Shall See.

...But this next Republican candidate, he's one that won't make mistakes.

Now please take the two polls below.

Who do you WANT as the next president?
Howard Dean

Free polls from

Who do you think will BE the next president?
Howard Dean

Free polls from

Left grip is 35 pounds (29, 35, 35), right grip is 78 pounds (78, 785, 78), left leg balance is 6.19 seconds, and inhale volume is 4490 mL.
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