Sunday, February 29, 2004

If I had a hammer

My wife took both kids to the store, in the double stroller, and I went down in the garage to have a look at where I might take steps to resume the sheerwall project. I started tapping at the old drywall a little with the hammer, made a few pencil marks, and then started ripping the stuff out just like I had been doing over a year ago when the baby was born. Now I have a 4' by 8' section on the ceiling cleared, and a plan for tomorrow of raising up a piece of plywood and nailing it from the floor joists overhead. That is, as long as no one throws up tonight, and we get a reasonable minimum amount of sleep as defined by the International Red Cross and the United Nations human rights commission.
Still no decent sleep

The baby is doing much better and is eating like a horse, which is good. And she had a large, normal poopy this morning. But she kept us awake from roughly 11:30 last night to roughly 2:30. Terrible. I went for a walk and my knee and hip joints seems just a little wobbly. I invalidate the symptom, as per policy, because of my lack of sleep.

For the morbidly curious, please check out the So You're Going To Die! link on the right-hand side of the page.

Saturday, February 28, 2004

So, You're Going To Die!

In this age of lawyers, doctors, litigious people, and malpractice suits, it is rather remarkable that the ALS specialist doctor we saw would allow himself to be videotaped advising us. I take that as a very good sign that I am dealing with straight-ahead people. It took a while to transcripe the videotape, but here is is: So, You're Going To Die!

The nice guy who has been sending those pro-Bush emails recently sent me a chaff email advocating boycotts against major gasoline stations, so that we can get the lower gas prices we deserve. Only problem is, I am under the vague impression that the gas prices are set further upstream, and that Exxon versus BP Amaco cannot really make a difference. I don't consider it worth looking into. I gave this guy two carefully-considered replies, and the chance to do some thinking for himself, and he just keeps sending me chaff. He's still a nice guy but I am filtering his emails to the trash.

My knees seem ever so slightly weak and wobbly, and that could be due to ALS or some other things, but while I am so sleep-deprived I discount all symptoms. Actually, last night was better. Sort of. My son came in and 12:38 AM and started fussing, which woke up the baby, who was inconsolable until my wife got her down at 2:30. Then the baby slept until 6:00, which was good. And my sweet wife took the baby downstairs and let me sleep until 7:15. So, things are not back to normal, but we are edging towards a better sleep schedule, and the kids don't appear to be getting sicker, they appear to be getting better.

Friday, February 27, 2004


Several people have mentioned "Tuesdays with Maury." I don't read fiction these days, though. Not sure yet. Baby woke at 12:30 and 4:30, which is better. I hit the couch right after dinner and after putting my son to bed.

I would like to start taking one of the riluzole on an empty stomach to ease myself towards doing that with both pills, but I have been so hammered by the kids, and with the stomach flu bug presumably still watching and waiting to pounce, I am reluctant to put myself through nausea at this time.

Bit by bit I have been transcribing the video my wife of the doctor at the clinic giving me the bad news. Actually, he focused on the positive. He said there are several strong reasons to be optimistic in my case. He also said that the riluzole results from the UK are showing better effects in people who begin taking it earlier in the process. Nevertheless, when I finally post the transcript to this blog, I will title it "So You're Going To Die..." in reference to the pamphlet of the same name that Homer Simpson received after eating the poison fish.

The right hand hurts, I think, due to a combination of using the Grib Builder too much, and too much knuckle cracking. It'll forego the Grib Builder today, and go easy on the disgusting habit. By the way, did you know that almost all computer programmers crack their knuckles. Even the ladies? Even the ladies from India!? Oh yes, it is true.

Had a very mild, fleeting proto-cramp in my left bicep when I got up this morning.

Thursday, February 26, 2004


The baby is eating like a wild animal, which is good. We thought this might translate to better sleeping. It has not. My wife got 3.5 non-contiguous hours of sleep last night. I probably got 5 non-contiguous hours. I don't feel too hot.

When my son came in to wake us up (2 AM?), I yawned and stretched in bed, and got a painful cramp in my left calf. This is the one that gave me problems while running a while back. By painful I mean I launched into fierce, whispered cursing, and grabbed and massaged the calf until the cramp stopped. It was kind of a spasm I guess. I was saying ALS is painless but actually I read that some people have a lot of pain from cramps. I guess that if that cramp had gone on for hours or days I would have been pretty put upon. But it was brief and I went back to sleep.

Not sure what caused the cramp potential. I had taken a power walk that afternoon.

The brother-in-law is here for a couple of days and he is good with kids.

The sump pump I put in before the baby was born is working like a charm. I was looking out the back window (into the torrent) yesterday when I heard it go off, and got to see it chuck a bunch of water out into the yard. Nice.


Wednesday, February 25, 2004


I got that one good night of sleep a couple of days ago, but last night there were seven interrupts. Five from the baby, and two from our son. Now, the good news is that he appears to be fighting off the stomach virus. But he didn't feel well yesterday and I picked him up early from preschool. And he had lots of very fluffy poops. Not what I would call diarrhea, but clearly some gastric distress. And he has heartburn. He came in last night totally wet from a urine overflow, but not, thankfully, a wave of diarrhea. My wife, who had handled the other five interrupts, also handled this one. Though I had said I would. I took the next one however, in which he came in to say he heard rain. I gave him the standard pocket lecture about staying in your bed and tucked him back. My wife was a shambles in the morning. After breakfast, I watched the kids for a while, while she napped.

I staggered around the house, loosely-jointed, weak, dropping things, thinking it was funny that I have no idea whether my discoordination is due to ALS or simply lack of sleep. I have declared a Symptom Holiday for the duration of this round of kid illnesses. Whatever spasbo behaviors I commit, I ignore. It's all due to sleep deprivation.

But it was pretty comical last week when I was downstairs in the utility room bathroom, and saw an ugly insect of the wall which I decided to decimate. (The whole area is a construction zone, so don't worry about bug guts on the walls). I delivered the stealthy, healthy karate kick, the sort of thing I have done hundreds of times before, and not too ambitious at that. And wound up on my butt! My left knee had somehow given out, gone sideways. I banged part of myself on the lawnmower and was lucky to be unhurt. Except for my pride. The ugly insect, my opponent, writhed on the floor, so I had at least stunned him, or her, or it. Then I stamped him or her or it and lost my arhat status.

This morning when my wife popped back up from her nap, I emptied the dishwasher, loaded it with dirty dishes, took out the kitchen trash, cleared the dam that was building up behind my back tire and flooding the sidewalk with the gushing rainwater, washed my hands, made a snack of three pieces of white bread with strawberry jam and three breakfast sausages, gave Joe five crackers, and lay down for a while. Then when I felt refreshed I got up. To write this.

I read the book Black Hawk Down. Pretty admirable for all the mistakes it doesn't make. Basically he just interviewed lots of the soldiers, plus some Somalis, built up an accurate account of it, and wrote it clearly. Nicely done. So having read the book I decided to rent the DVD. I got part of the way through it last night, watching it on the computer. Which turns out to have better picture clarity than the TV.

I also got my settlement in the state anti-trust lawsuit against the music industry. Thirteen dollars and eighty-six cents. As a person who had purchased music CDs within the period of record company malfeasance, I was entitled to part of the settlement. I signed up over the web quite some time ago. More than year I think.


The baby's poop is getting thicker, Still pretty runny, but thicker now, and nice and dark.

I got a nice, lively email from my friend Toon (let's call him Toon), who obviously isn't using the blog address I sent him because he asks how I am doing. I'm getting killed here, Toon. Toon is a lively guy and witty. Also handsome and hunky as sin, so a major part of his life mission is traveling around the country providing some lovin' to half the lovely ladies out there. Literally.

And speaking of lovely ladies, a dear friend of mine who I used to work with, who for years has been living with a rare form of brain cancer, also sent me a nice email. Live For The Day, she said. Yeah, baby. I got it.

Despite all the sleep deprivation, waves of energy do come and go, and I can report the good news that I jogged to the gym for a light workout the other day and it went well. Also, last night I did 12 push-ups. I can't say this for sure, but I seem to recall sometime after the diagnosis but before I started going to the gym that I could only do three. I also remember, quite clearly, when I could only do five. And in other good news, I squeezed the Grip Builder 26 times with the left hand and 85 with the right. I don't know about you, but my rules forbid grip adjustment. The device tends to squirt around in your hand, particularly if you release suddenly. So I make a practice of releasing the pressure slowly and keeping the thing positioned right. Positioning is everything. If you let it pop off to sweet spot on your thumb muscles, or let your fingers slide, you might wind up with a score of only six squeezes, or something like that. Anyway, 26 is better than the 11 I started with. I am getting stronger.

Tuesday, February 24, 2004


Boy complained of tummy ache this morning and thought he might throw up. But after some ginger ale, crackers and toast, he asked to go to preschool. I called the teacher and she says he is doing fine. I am hoping that he fights off this stomach ailment. Meanwhile the baby is even more chipper, although she did have a diarrhea poopy this morning. I am hoping that is just a transitory result of yesterday's shot. Fortunately, she is eating.

Last night my wife had to feed the baby basically every hour. Still is a wreck, but somehow functioning. I kept waking up when the baby did. I am not caught up on my sleep. This morning I had thought the baby was sleeping with her mom in the bed next to me. When the crying of the baby came over the monitor by our bed, I reached to turn it off, thinking: "The crying from the monitor might wake up the baby!" That's sleep logic for you.

Monday, February 23, 2004

Baby is home and cheerful and laughing. All her joy which has been plugged up for a week is coming out. She had the shot. She is eating modest amounts of food. She's not moaning. Oh, yes!

I just dropped off my son at preschool. He did not have any huge poopy blast last night. And he did eat some breakfast and does not have a fever. So knock on wood.

The baby is with her mom at the pediatrician's office. Naturally we have stopped giving her the antibiotic and, while the ear infection seem to be still hurting her, she was much more cheerful and functional this morning, and no poopy blasts or vomit, either.

Parents, and parents-to-be, remember this: When you kid (1) stops eating and (2) does not sleep well, they most likely have an ear infection or some other problem. These are the two key signs that you should take them to the doctor like we did.

I actually got 6 or 7 hours of sleep last night. My wife had to get up at 2ish, 4ish, and 6ish to nurse the baby. But I slept right through it until the 6ish one. And as I said the blessing is that I did not get slapped with a torrent of vomit, or washed out the door on a wave of diarrhea.

Sunday, February 22, 2004


Everything was fine with the baby all afternoon, which is a pattern I had noticed yesterday. And then we got home from my son's first piano recital (him and 10 other kids), and she gamely took one spoonful of yogurt. Then my sneaky plan was that the next tiny spoonful would be the antibiotic. It's brand name is, I think, Augmentin. She gamely took it, curled up her nose and lip, started coughing, started gagging, and threw up all over the floor. She has lost two pounds now and only weighed twenty before. Our friends say she look scary thin. And now I think we can say that the antibiotic is making her throw up and have diarrhea. It may be true that she did throw up at 2:00 AM that one night, before the antibiotic. But our credible theory was that her tummy just got too full that time. She seemed to be on the road to recovery and the diarrhea and vomiting had stopped. The repeated diarrhea and repeated vomiting started only after the antibiotic, which was prescribed for the ear infection. That's convincing enough for me. I refuse to give her any more, and my wife is of the same opinion. One the side of the bottle the small print lists vomiting and diarrhea as possible side effects. There is a way out, however. Apparently the pediatrician's office already told my wife that if the baby is not responding to the antibiotic, they can just give her a shot which will clear up the ear infection and obviate the need for nine more days of antibiotic. We are going to take that option. But first, we are -- my wife actually -- is going to make darned sure she has explained to her, to her satisfaction, what is in that shot. We are pretty sure it won't be Augmentin. I count as one of my blessings that my wife is very precise about information, and verbally alert and adept. She is not about to be cowed by any fast-talking functionary at the doctor's office. I can count on her to protect the baby. I think she may even call me on the cell phone to brief me before they give the baby the shot.

In other ominous news, the boy says he had a loose yellow poopy, and my wife verifies that although she did not see it, she heard it sloosh out of him. And he says he rectum hurts, stings, like burning. It looks normal enough to me, maybe just a tad reddish. I wiped it with a baby wipe and he flinched and said it hurt a lot. I believe him. Then I put a big glop of A&D ointment on it and he flinched and cringed for a moment, saying it hurt, but then he seemed to be better.

All this relates to trying to get food into a boy who is constantly putting his hands in the back of his pants right when you are trying to get him to sit down and eat. That's right after you swab the vomit off the floor. Imagine, if you will, how many times I washed my hands.

To my son and daughter, I will say, if, through some fluke of the internet, or data retention, plus boredom, you wind up reading these accounts at some year in the future, I want you to know that, while I am writing mostly about the stress of parenting, the fact is that I am in awe of you both, and I love you, and I would sacrifice anything for you.

The baby was throwing up and having wet poops all morning, and my son and I went on a supply run to the pharmacy and supermarket. Diapers were on the list to be sure. We stopped in the sports supply store and I picked up a couple of hand squeezers. They call it a "grip builder." OK, whatever. The conventional one has a clicker on it to count your squeezes. Perfect for a metric, so I added a category to the Metrics table. I was able to do 11 with the left hand and 62 with the right. At a certain point my grip on the grip builder begins to distort the spring sideways and the clicker no longer clicks. I consider that squeeze failure and stop counting then, 'cause the ol' clampy hands, experienced as they are at squeezing, could not keep things under control.

And, in a real victory, my daughter perked up this afternoon and sat with me on the kitchen floor ,eagerly accepting tiny spoonfuls of yogurt ... two tablespoons in all! This is a huge amount of food, compared to her refusla to eat for the past two days. And so far, knock on wood, it has stayed in her.
Rebel yell

Got to sleep pretty quick after that last blog entry. Then a rebel yell from the baby. Stagger up to use the bathroom in the laundry room downstairs. Microwave says 6:14 AM. Entire body shivers. Fasciculations? Hmm. Left hand unable to open dryer. Try again. Struggle... Got it! Death by ALS, or death by sleep deprivation? Does it matter? Slam face down on couch. Wife arrives with baby, says it is time for my expertise in getting the antibiotic into her. Oh, that. Poor baby is furious, wants to spit out every last drop I give her. I have to give her tiny squirts at the side and back of the mouth, beyond the defense of the tongue, the gnashing teeth. I scoop it back into her mouth. She's more furious. I learn to keep the plastic dispenser needle between her teeth, which inhibits the pursing and spitting. She has to swallow it, as I hold her on her back.

So far so good. It went down and stayed down. She needs it twice a day. Only nine more days to go. Until the next ear infection or stomach flu.

I love my children. They are miracles. They truly do kill you, but you would never, ever rewind the tape of time if you could.

For those of you who are young and not ready yet for children, I advise you, never ever let your naughty bits snuggle. It's that simple.

I'm heading back to the couch to re-try the face-down slam. The computer froze, but has recovered now, so shall hit the submit button. Resist and endure, never surrender.
2:57 AM

This time the baby threw up at 12:48 AM, after getting a small amount of liquid Tylenol. Yes, we are using the advice nurse available by phone. The poor girl is pretty perky and game once she is cleaned up. She found a book and wanted me to read it to her. Stood on her own two feet. Did the same thing last night. The baby rejected the flavored Pedialite. We had already used the unflavored type. After opening it, you have only 48 hours in which to use it, which, in actuality, means to throw it out. Kids rarely drink any of it, and apparently it is an ideal medium for culturing bacteria. Hence the time limit. By 1:35 AM I had cleaned the bathroom floor, and mixed some rehydration solution under my wife's instruction, eaten a banana. My wife bade me to try to get some sleep. She would comfort the baby. Here's an small piece of artwork an Indian friend gave me, which depicts a mother taking care of her children. I lay downstairs on the couch. But even when the moaning, or crying, of the baby is on the other side of the house, it yanks you back out of your gathering slumber. Because of this Chinese water torture, I cannot sleep and have not been able to sleep for several nights. I am sure that there is a generic, non-racist term for Chinese water torture, but I don't know what it is. Drip. Drip drip. Drop. I went in to the room where my wife was comforting the baby, and confirmed once again that the water torture is vastly to be preferred to the adrenal task of actually holding the baby. Much to be preferred. That's more like going over Niagra Falls in a barrel. Hold on. This wee-hours blog entry is my fond hope to maybe burn some energy, exhaust myself, and get back to sleep. I am listening to really depressing public affairs programming about the destruction of the environment, using a $9 tiny personal FM radio I bought in preparation for my recovery from the spinal tap. This thingy is almost as satisfactory as the expensive iPod, since I love listening to the news. I remember lying on the couch, drifting on Vicodin, listening to the radio as the ground attack on Iraq commenced March 20, 2003, the day I had my wisdom teeth removed. It was weird, but the ability to listen to news, no matter how alarming, was comforting that day. After the second day I got spiritually tired of the Vicodin, and switched to ibuprofen. It worked out fine. That was long before I found out I had ALS. The whole wisdom teeth thing is another example of a series of incidents which interfered with my usual tendency to exercise, and certainly to play basketball. When they are sniffing you for ALS, they do ask you if you have had surgery. There is some reason for this inquiry. I forget. But if it could somehow mean that I am temporarily afflicted, I am in favor of the theory.

Saturday, February 21, 2004


Even worse. The baby threw up again around 2 AM.

7:00 PM recap:
...Last night there was little or no sleep for my wife, and the same applied for me. I had just retreated to the couch at around 1:48 AM, when the baby woke for a feeding. My thinking, as I drifted off to sleep, was that when you have ALS, you really do not want to get a vomiting/diarrhea combo that zaps your will to live for two or three days, during which time your muscles and nerves decay. Really.

That was when the baby threw up. I went upstairs and helped cope. The baby was chipper and happy, actually blew me a kiss with flecks of spat-up mama-milk still on her cheek. I stripped the bed and put the mattress cover into the laundry machine. The water-resistant 'shammy' that my wife usually puts down under her was by coincidence not deployed. But fortunately the mattress itself had no puke on it. We got lucky. Parenting is a lot like flying the space shuttle.

So then I tossed some new sheets on the bed and, in the interest of self-preservation, ate a banana and went back to the couch while my wife endured getting the baby back to sleep, and the endless round of wake-ups.

Really, my sister is a gift, because she came over this morning and played with our son while my wife coped with the baby and then napped.

In the afternoon my wife took the baby to the urgent care room at the local hospital. My son and I ate lunch and played. He was in a good mood. I read him Pooh stories and put him to nap. Then I napped. He got two hours and I think I got one. My whole soma cried out in protest when he woke up and woke me up with the usual protests about whatever was handy. I did NOT want to wake.

The rest of the day was miserable and then guess what? We got to take care of four kids at once! We had done an exchange with friends on Valentines Day, in which they watched our kids. Tonight, of all nights, was the payback.

Actually, I myself got to take care of three kids. Under my wife's instructions, I made the dinner. I put Tylenol into the baby, and then my wife nursed her. The plan was to get her calm enough to take the antibiotic which she had spat back earlier. She has been too upset to eat or drink, except to nurse. But she needs more than breast milk now. Kids will fight hardest against whatever they need most, whatever will make them most comfortable. Anyone who has tried to put a diaper on a baby who wants the diaper change to be over now will understand the irony.

So I coaxed/coerced the antibiotic into her and then my wife took her upstairs to put her to bed, because she was exhausted. That left we with an 18-month old, and two four-year-olds. The youngest one has a trait of inadvertently breathing or spitting into your mouth or nostrils with surprising accuracy from long distances. He's the one who gave our daughter the stomach flu. I must have washed my hands 20 times. Then, after all the chaos of dinner (with me grabbing bit of food while passing in and out of the kitchen), I was the only man standing to get the baby into his pajamas. Guess what? He had a poopy diaper, which I discovered to my surprise. The wipes in his diaper bag were as dry as sandpaper. I used one from ours. I got him into his pajamas. I am an enormous hero. Then I coaxed the two four-year-olds to put on their own pajamas. This, they did admirably.

The baby is asleep, and the other kids have been picked up. My wife and I (and the poor baby) have endured a full week of interrupted sleep. Let us fervently hope that tonight things begin to change.

Friday, February 20, 2004


The baby is teething in molars. Those are blunt and hurt a lot more than sharp teeth. She is also recovering from the stomach flu that makes her insides hurt. She has lost a pound and five ounces as a result of the diarrhea. She weighs less than 20 pounds. Yes we have taken her to the doctor. Yesterday in fact. The baby is miserable and woke up repeatedly last night after we went to bed. My wife took care of her. It seemed like that went on for hours and hours. I got up to help get infant's Motrin into her, and was surprised to see it was only 11:45 PM. I really want to avoid the stomach flu. The mother of the baby who plays with ours so much just got it yesterday. This is after almost two weeks of not getting it. We assumed the older children and adults would be in the clear. Last night, though, I was afraid the fatigue would give the bug an entree, so I went downstairs to sleep on the couch. Selfish? Sure. But survival too. Fortunately the Motrin helped the baby sleep another five-and-a-half hours. So my wife got some sleep. She claims.

Thursday, February 19, 2004

Guns don't kill people, kids kill people

I was going to bed last night with a headache, and thought about taking an ibuprophen, but then recognized that, although I don't take analgesics much, that has been my sole analgesic for the past six years. The period in which some combination of factors gave me ALS. Or maybe none did. But I operate on the Change Is Good philosophy, so last night I decided to stop taking ibuprophen. I could not locate the Excedrin so I went to bed. Then I remembered that I had forgotten to take my riluzole with dinner. So I took it on an empty stomach. Went to bed. Felt nauseated, precursor barf feelings. Drink a little ginger ale, got out the barf bucket. My wife came to bed and the baby started crying, so my wife attended to her. That was around 11:00 I guess. Then at 2:30 the baby again. I was having trouble falling asleep. Then at 3:30 my son came in, said he needed to go poo. Then said he changed his mind. I put him back to bed. Then at 4:30 he came in again, said he wanted to say something to his mom. He whispered "I love you" to her and I took him back to bed. You may think this is sweet but we have tried everything except beatings to get him to stop this kind of stuff. Now I think we just have to wait for him to grow out of it. Then at 5:30 the baby again. Then at 6:30 the baby. I felt like ten pounds of soup in a five-pound bag. My wife must feel like a broken fan belt held together by duct tape.

I've never been good with handling unwanted noise from several sources at once. That's part of the reason why I was rarely in bars, parties, or restaurants. Part of the reason. The other reason was my basic unpopularity. Did you know that a baby's crying is designed by nature to be the most annoying thing you will ever hear? Now mix that in with the chatter of a sweet by energetic four-year-old who is currently experimenting with loud noises, interruptions, and social control through induced confusion. And remember that I have a headache. Wish me a nice day.

Guns don't kill people, kids kill people.


Wednesday, February 18, 2004


I was walking my son home from pre-school today. He had wanted me to bring the stroller and push him in it while running. I usually do that with him on the way to preschool, but this morning I skipped it so that I could save my juice for the planned run with my wife.

Then I injured my calf muscle.

I usually don't bring the stroller to pick him up. We just walk back. So when I picked him up I told him I hadn't brought the stroller because I pulled my leg muscle while running. He was OK with that. I want to get him used to the idea that sometimes my limbs won't allow me to do certain things, just in case it happens more often. Not that he isn't used to it already -- he's seen my with an injured foot and a sore back recently.

But anyway.

So as we are halfway back, his soft little voice said "Dad, why are you still on vacation?" I know this bothers him.

"I've been on vacation longer than this before. And I want to spend time with the family. And we're going to Hawaii. And I want to work on my own projects and things." That bit about my own projects was a good thing to say, because it is true, and if he accepts that, it may help him understand why I keep being on vacation. And at some point we can just explain it in terms of me wanting to work on my own projects. Of which I have many planned, and several of which involve writing computer programs.

Reading the reactions of kids is more of an art or even a faith than a science, but my gut feeling was that asking the question gave him a sense of relief, and that my answer also gave him confidence. That's what I think. Then we sat down on his "resting place" half-way home and he fingered some caulk between two bricks and asked me what "caulking" is.

Leg and speculation

I went for a run today with my lovely wife, basically a repeat of the previous route to the power lines. I had the same problem as before with the atypical toe friction, the one I had previously attributed to improper sock deployment. This time I tightened up the running shoe laces on that foot and it seemed to resolve the problem.

I had a terrible but short illness in October 2003, followed by the most wracking cough. The kind that leaves your whole body sore. I mean, truly. My hips were sore from all the coughing. A co-worker from India suggested the remedy he says they use:

before bed
heat one cup of milk as hot as tolerable
after heating
add around 1 TBSP (or more) ground black pepper

I only drank half of it. It was not so bad, kind of like coffee. But I don't like coffee. You only have to drink it once, not every day. Amazingly, this remedy suppressed my cough and allowed me to sleep. I had been coughing for long periods whenever I lay down (or stood up). It also suppressed the cough during the day. OK, I had a occasional mild, wheezy cough, but nothing like the convulsive spasms I'd had before. You can call it coincidence if you like, but I think the Indians are on to something. My theory about why it works is that the pepper is basically a toxin which the germs cannot abide. It's the same reason people tell you to drink a spoonful of honey, or gargle with salt.

Anyway, it was not long after that when I fell down the stairs at work and hurt my left foot (not the ankle). The fall was October 23, 2003. It made me unable to walk for a day or two, and pretty inactive for a few days. But I recovered fast, in about a week if I recall. And I started jogging to my car in the parking lot when leaving work, as a way to get my foot used to running again. It was at that time that I noticed a certain lack of spring in my left leg. I attributed it to the foot injury and subsequent period of disuse. And although you might think I now attribute it to ALS, I am not so sure. My foot does not feel that sort of flat non-springy feeling now. So maybe it was just the fall on the stairs.

But then a few weeks later, in mid-December, I noticed the generalized problem with my left side that rapidly led to the MRI and all that hooey.

Now, the shoe which I tightened the laces on today was adjusted to be pretty tight before the time that I fell on the stairs. Both of them were. I remember specifically that they were a bit too tight to easily slip into, but that they felt fine when running, so I decided not to bother re-lacing them. So at that time, in early- to mid- October, it was tight, and it was fine. Today it wasn't, and I needed to tighten it more. This supports the idea that some atrophy of my left foot occurred shortly before, or sometimes after, the Oct. 23 fall on the stairs.

Which leads me to think that the major ALS symptoms (left side impairment) may have advanced a lot during the period of the illness and awful cough, and subsequent brief period of disuse after the stair fall.

Which, in a way, is encouraging. Because it means that, if certain things can accelerate my impairment, there is power in knowing that, and mitigating the effects, rather than just letting it happen to my ignorant corpus. If I get injured again, or sick, I need to do my best to pamper daddy and make sure he still gets some mild exercise and motion.

Actually, I already am injured. Sort of. When I did the 100-yard dash last week, I strained my right calf in a mild way, and got over it by the next day. Today, when my wife and I went on the power-line run, I noticed a strain in my left calf once we had gotten up to the lines. We walked back, because it hurt a little. I believe that this is the first time I have "injured" myself in an ALS sense by over-working a muscle. It is a mild soreness but it gives me pain when running. It does not feel like a usual or normal strain. It reminds me of that time when I was a freshman in college and started running for the first time. I would go every single day, for really hard runs. I got to the point where I was unable to walk, because I had over-used my muscles so much. This strain feels like that strain. It's a different sensation from a normal soreness or normal pull.

So I plan to cut out the power runs for now, let the leg recover, start some minor jogs again, and continue working out in the gym. I need to assume that the muscles of a person with ALS need a little more recovery time and pampering.

By the way, my performance in the gym is getting better and better. I attribute that to the fact that I am working out regularly, and to the DHEA. I am off of the creatine right now as part of the three weeks on, one week off plan.

Tuesday, February 17, 2004


I always thought that "lame" was a lame way to say that something meets with your disapproval. After all, "lame" literally means that you have difficulty moving. How does a lame person feel when you say something is lame? I'm not lame yet, though I'm supposed to be headed that way, but so far it doesn't hurt my feelings.

So my Clinton-hating acquaintance has been sending me more forwarded emails which state the conservative viewpoint rather poorly. Actually, I should say, the "pro-Bush viewpoint," because I am hopeful that a number of conservative voters are becoming somewhat dissatisfied with the lame mutt fouling all over their boat.

Herewith, the email, and then my reply. If my acquaintance can come up with some sort of response that addresses my points (even if I disagree with them), I can continue to respect him. But if he just fires the Liberal blunderbuss at me, or forwards more emails that he didn't write, I'll filter him to the trash.

The forwarded email:

The following appeared in a newspaper as a letter to the editor and will put things in perspective:
The Facts

Some claim President Bush shouldn't have started this war. They complain about his prosecution of it. One person recently claimed Bush was the worst president in U.S. history.

Let's clear up one point: We didn't start the war on terror. Try to remember. It was started by terrorists on 9/11. Let's look at the "worst" president and mismanagement claims.

FDR led us into World War II. Germany never attacked us: Japan did. From 1941-1945, 450,000 lives were lost, an average of 112,500 per year.

Truman finished that war and started one in Korea. North Korea never attacked us. From 1950-1953, 55,000 lives were lost, an average of 18,333 per year.

John F. Kennedy started the Vietnam conflict in 1962. Vietnam never attacked us.

Johnson turned Vietnam into a quagmire. From 1965-1975, 58,000 lives were lost, an average of 5,800 per year.

Clinton went to war in Bosnia without UN or French consent. Bosnia never attacked us. He was offered Osama bin Laden's head on a platter three times by Sudan and did nothing. Osama has attacked us on multiple occasions.

In the two years since terrorists attacked us, President Bush has liberated two countries, crushed the Taliban, crippled al-Qaida, put nuclear inspectors in Lybia, Iran and North Korea without firing a shot, and captured a terrorist who slaughtered 300,000 of his own people.

We lost 600 soldiers, an average of 300 a year. Bush did all this abroad while not allowing another terrorist attack at home.

Worst president in history? Come on!

My reply:

Wow! All other considerations aside, it would be phenomenal if you could send me the source for this:

> Clinton ... was offered Osama bin Laden's head on a platter three times by Sudan and did nothing.

None of the email is sourced, but I gather that wasn't the point. It seems to attempt to undertake these missions:

1. Show that the U.S. of often involved in wars without the U.S. being attacked.

2. Refute the "worst president" charge mainly on the basis of casualty run rate.

3. Conflate the war against terrorism with the decision to invade Iraq.

Objective number 3 is attempted by quoting an unsourced letter which states that "Some claim President Bush shouldn't have started this war." On the face of it, one knows the writer must be referring to the attack on Iraq. The email then reminds us that Bush did not start the war on terror. One of these things he did start, but the objective is to conflate, not to clarify, and so the email moves on.

Then the email begins listing wars, defining who started them, and listing the casualty rate. First there is the assertion that Japan attacked the U.S. but Germany never did. Germany formally declared war on the United States on Dec. 8, 1941. Perhaps better than anything, this glaring gaffe dismisses the relevance of the subsequent series of dubious half-truths about who started each war.

An informed person would be aware of a few notable points, such as that Truman did not start the Korean war, as the email states. It was started by North Korea, and the U.S. was drawn into it as part of a United Nations action to contain aggression. The email states that Kennedy started the Vietnam conflict, dodging the fact that major U.S. air strikes and ground-troop presence began only in the Johnson administration after the putative Tonkin Gulf Incident in which it was believed that North Vietnam had attacked a U.S. naval vessel.

The term "quagmire" in used in this email to describe Vietnam is poorly considered. While I believe that the term is accurate, there are those who believe Vietnam was an essential holding action against the spread of aggressive Communism. The idea was to fight them there before we had to fight them here. Exactly the sort of justification that Bush is using in Iraq now that the WMD charge has evaporated. I believe that someone with the intellectual advancement of a high school sophomore crafted this email. Further evidence is the careful calculation of casualty run rates as if they were relevant to the "worst president" charge.

It would seem to matter more whether each war was a justified war. For example, if we invaded Canada, that would be unjustified. If we invaded Afghanistan after 9/11 that would be justified. If we invaded Iraq after 9/11, there would be opinions on both sides.

But the real point of the email is to tout Mr. Bush.

So let's address those points. Contrary to what the email states, rather than having liberated two countries, we are in the process of trying to liberate two countries. Progress has been made, and so have mistakes. It is quite right that Al Qaeda has been crippled, as have the Taliban, and we would have expected any president to unleash the U.S. military and intelligence people to perform this mission in Afghanistan after 9/11. To his credit, Bush did allow it. However, as far as nuclear inspectors go, the U.N. put inspectors in Iran and Libya. And the sporadic U.N. inspection regime in North Korea pre-dated Bush. All the while, the Bush administration has attempted to undermine the credibility of the U.N. inspectors, in Iraq and in Libya.

Continuing the conflation effort, the email refers to a "terrorist" who was captured, presumably meaning Saddam Hussein. He's certainly a murderous dictator, and in that sense a terrorist, but while there was arguably good cause for removing him, his support for Al Qaeda remains undemonstrated.

If Bush actually prevented more attacks on U.S. soil, then more credit to him. Any president would have striven to do the same.

I suspect that the charge of "worst president," for those who make it, may be based more on the charge that his untutored unilateralism and opposition to treaty obligations per se has weakened our usual alliances and made us less effective in prosecuting the war on terrorism or leading the world. Not to mention his attacks on the environment and working people. Or the huge surge in the national debt. And crippling effect on civil rights. In ignoring those elephants in the room, the enthusiastic but poorly-considered school of emails of which this is an example, does more to harm Mr. Bush's cause than it does to help it.

I would be most honored if you would favor me with a considered reply.

Yours faithfully,

Poor baby

My wife and I went for a nice dinner on Valentines Day, while friends watched the kids. Just as we were getting ready to go to bed, our baby daughter started vomiting and having diarrhea. My wife heroically took care of her through the night, and in the morning was chipper in declaring that the two hours she got here plus the two hours she got there were enough. Plus, she napped for an hour at mid day. But I tell you, I don't know how she does it, because I was a complete wreck all the next day. I could barely function. However, that night (and also last night), the baby slept normally. So I am back in the land of the living. At least temporarily.

Like you.

Friday, February 13, 2004


So I went out to the track where on Jan 21 my wife timed my 100-yard dash at 16.19 seconds. That's my baseline for future comparisons. I have created an HTML table for tracking these results online.

My watch his a stopwatch function, and I know how to use it. But I still had what I call a typical Brainhell moment. After carefully marking the finish line with litter left by junior high kids, I pressed the start button on my watch and blazed down the track. My wife had previously noted that on my first sprint I wandered a bit on the track. This time I ran straight and true. I kept trying to move my left leg faster but it kept refusing, so I lengthened my stride and used my strength. I pressed the watch button as I crossed the finish line. I looked. 0.20 seconds! Augh! I had somehow messed it up. The little LCD said "Lap." Then I pressed the button which clears the time value. The watch said 15.60.

Apparently I pressed the button twice when I crossed the finish line, and began timing the second lap for 0.20 seconds. I decided that 15.60 seconds was my actual time for the 100-yard dash.

That is 0.59 seconds better than last time. I chalk that up to better form, this time, and not getting a stutter start, like I did last time. But that still means I have not gotten any slower since Jan 21.

I'll have to test this again some other day, but for now I am pleased.

Happy diagnosis anniversary!


The ALS book, and the 100 blank DVDs are here. I also had two good phone conversations with friends.

National Guard Pay Records

A friend friend provides this proof that cracking your knuckles is not bad for you. I remained convinced, however, that is is spiritually bad for you, and can aggravate your friends and loved ones. Nonetheless, I am cracking my knuckles again (strictly for anti-ALS reasons). This "proof" is as helpful in justifying my new habit as it would be if I were a president who released a few patchy pay records to try to prove I didn't skip out on my National Guard duties 30+ years ago. Everyone still hates how annoying I am.

By the way, I have not noticed numbness in my toes for a while now.

Thursday, February 12, 2004


The Mars rovers pictures are astounding. Remember, this isn't a picture of a dried-up mud puddle in Jersey -- it's Mars! And between you and me the thing that would seem to best explain the uniformly distributed, nearly circular nodules, as well as the layered rocks in the upper left, is the evaporation of marshy (not flowing) water. They are going to have one of the rovers spin its wheels to build a shallow trench. I bet they find a lobster in there.

Another astounding thing is my wife's ability to tolerate that I have begun cracking my knuckles again, full scale. Just like the bad old days. I was really proud when I stopped in 1997, because it is a gross habit. But I am back in the habit now. Snap, snap, snap. And she hasn't complained once. Though my baby daughter did once look at me with alarm when she heard it. My wife even tolerates that I have resumed doing it on a totally unsupported, whimsical, wacko possibility that somehow the cessation of knuckle cracking (in my case) could have had a bearing on the ALS situation.

As I was digging up dandelions I mused that people have been attacking dandelions for decades if not centuries. Now, dandelions exist in the wild, where no one attempts to dig them up. Animals eat them. Even some people use them in salads. I think these people are French. Anyway, I wondered if the relentless (OK, judging by some of my neighbors, not so relentless) pressure on the weeds have led to any selective effects. That is, favoring dandelions which seed more suddenly, or which are herbicide resistant, or what. (I fight them with a trowel, not chemicals). I suppose this could be investigated by sampling the DNA of wild dandelions (in nature reserves and other places which are not plowed or gardened), and comparing it to dandelions sampled from suburban lawns. I am betting there would be some interesting differences.

Heaven forfend one of the rovers snaps a picture of a dandelion on Mars. Then I would snap.

China update

My pal in China reports that it's not just my blog, is blocked in its entirety. That makes sense; there's entirely too much free speech and personal expression on blogspot. And remember that this censorship was aided and abetted by the search engine Google. I use All The Web rather than Google. Perhaps Xenu will get me. (By the way, rather than "eternal batteries," I think the religion should be founded around collecting enough money to send periodic missions to replace the batteries. Please, people, if you are going to start a religion, come and consult me first.)

It would be interesting to see a map of China-blocked domains. I'll bet there is one on the net. EFF? Or if there isn't one, somebody (Cateye!) could sneak inside China with a spider and generate one.

Wednesday, February 11, 2004

Banned in China

Someone years ago noted that I am a very private person, yet I wrote the most personal things in the newspaper column I had at the time. Word. The privacy thing is really a control thing. I am a control person. No, it's not that I want to control you, I just want control over my own experience. And that means not having to gamble on the unpredictable comments of other people pilfering through my private feelings. I love people, I really do, but cast not your pearls before swine, right? In order to control what comes at me, I learned when young to control what I put out. Beatles: "And well you know that's it's the fool, who plays it cool, by making his world a little colder." Cold? Hardly. Those of you who are my friends probably know that while I am a hard-ass, I am also a big softy. I believe I show caring when and where it counts. ...But why share all this personal stuff in a column, or in a blog, when any freak in the world, even the President of the United States, or the loathsome Kim Jong Il, could be reading it, right now? Control is the sneeze guard. Writing is controlled. Plus, when you write, everyone else shuts up. They are not required to read it, but they don't interrupt.

I took one of the riluzole at breakfast and I intend to take one tonight as well. Normally the clinic advises you to take one a day for two weeks, but it has been a week now and I haven't had any bad reactions, so the doctor told me I could go ahead and start taking two a day. Eventually you are supposed to take them on an empty stomach. Right now the food buffers any upset. I had an odd experience with one of the riluzole when I failed to swallow it on the first try and had to go get some more water. It must have dissolved a little in my mouth because it made my tongue and the roof of my mouth numb.

This morning after breakfast I helped my son complete valentines for everyone at the preschool. Last night we did the bulk of them. The rule is that everyone gets a valentine. Even Patrick. Who my son says is "naughty." But I think that he and his friend just like to "trap Patrick," as they say. They hunt him and detain him. When the teachers saw this happen they took away the rest of my son's recess. He hasn't done it since. I pushed my son to preschool in the stroller, jogging in parts, which he likes. Then I walked to the hardware store and got a small piece of child-proofing equipment for a cabinet, which I came home and installed. Then I ate an early lunch and cut my own hair in the bathtub, using an electric trimmer. No, it doesn't look perfect, but I'm into control: I don't like having to go to a barber when I want my hair cut. So I do it myself. Saves money and gives me a feeling of independence.

I also went out in the yard and dug up several dandelions. I don't know what it is between me and them. I used to think I could never win by digging them out of our lawns which have seen many decades of sun and rain and weed seed. I assumed you had to rip up the lawn and the soil, lay down some plastic for a few months, and then buy some sod and then it was only a matter of time until the weeds were back. But I am curious about these dandelions. I like digging them up. It's a chance to get out of the house and into the fresh air. Dandelions have an interesting choice in reproductive options. They don't need to flower, so you can't just pull the blossoms. If you leave a bit of the root in the ground you will get a new dandelion. If you chop the root into three pieces by accident, you will get three dandelions. My son loves to pick the 'poofies' and blow them all over the lawn. I have tried to educate him but to no avail. My approach in the back yard was to dig up every single dandelion I saw. I check every now and then and, despite infrequent flare-ups, the back yard is pacified. The front was a jungle of weeds. So many ... such tough Bermuda protectiong the dandelions ... no way to dig them all up. So I adopted a defensive strategy: Whenever one of the dandelions bloomed or put up a seed pod, I dug it up by the root. The others I left alone. My son would come out with me every Saturday and Sunday and we would dig dandelions. It was part of our routine. He liked it. Amazingly, there came a day towards the end of Fall when we could not find any more dandelions in the lawn. It was as if we had won. I knew the dandelions would be back, but for the moment, victory. Then winter and the rains came, and my Mystery Condition resolved into the ALS thingy. The fleshy green weeds came back. Some put up bright yellow flowers. My sword cried out for vengeance, but I had appointments for blood-sucking and spine poking. No time. So I wondered if the laughing weeds were going to have a field day. Whether there would be poofies all over the lawn. And that may yet come to pass. But this past weekend, my son and I dug up the flowering dandelions. And I took the fight to them again today. So, wherever the light of freedom struggles bravely amid the gales of tyranny, there you will find me.

After the cops defused the package, I emailed the pal in China who sent it to me. Still no reply. Maybe my computer thought his reply was spam. I sent him the blog URL. But Ronolulu says he emailed the pal, and the pal replied that he can't get to the blog because it is blocked. China limits internet access by maintaining an active list of banned sites. Now, my theory is that the vile Communist Chinese government blocks all blogspot addresses. But I don't know. It is possible that they could have a spider which trolls content and blocks certain sites automatically, based on keyword hits. Recall that my Fri Feb 06 entry mentioned that Google had helped China develop censorship software. There were some keywords in that post which would have been sufficient to trigger a block across Chinese-controlled routers. Most likely this would be accomplished by having the central spider process troll for keyword combinations that match a pre-defined list, and then add the banned address to all Chinese-controlled routers. But more likely the routers have a process for consulting a centrally-maintained list of banned sites, and they consult that list on a daily or hourly basis, and then update their own list. If I can get in touch with my pal in China I will ask him to see if he can get to other blogspot blogs.

The short runs and affirmation jogs are OK, but to really stretch the lungs and the heart, a long run is needed. I went for a long run today, up into the hills, half an hour of solid running outbound, up some hills you wouldn't want to run on, and I wouldn't want to run on either. Then I hiked up a hill with those power line towers arrayed on it. Like in the movie American Graffiti. But steep instead of flat. I was having a little trouble with a sore spot on my foot (induced by poor sock deployment). So my return was sort of a run/walk. With some pretty strong running. You wouldn't want to try to keep up. Unless you are Bruce Jenner, and you're not as fat already as Marlon Brando.

After the run I walked to the burrito place and ate a burrito. Then I came home. Made a blog entry. Now it's almost time for me to be daddy.

Tuesday, February 10, 2004

I forget

Been forgetting a lot of things. The day I went to fill my prescription, I drove most of the way there and realized I forgot the prescription. I drove back to get it, drove most of the way there, and realized I forgot my insurance. I went back to get it. That's my strategy. Just keep doing it until you get it right. Then yesterday I forgot the slip from the motor vehicles department telling me to get a smog check for the car. I drove back to get it, drove back out again. Then when I went to pick up the car after the smog check, I walked. Very nice day for walking. Got all the way there and realized I had forgotten my checkbook. So I walked the same distance two more times. All this walking is good. I have been focusing on the lifting and the running, but walking practice is good. Don't bother coming with me. You can't keep up. (Except you, Honey).


Monday, February 09, 2004

Homeland security
So I got this package in the mail, something in a wide flat box. No return address, just some writing in an Asian language. It was addressed, correctly, to me by hand. There was some packing tape on it. I was baffled and suspicious, and I put it in the basement for several days. No terrorist organization is out to kill me specifically, although in a general sense I'm sure they would not object to the idea of me being dead. My wife and I had no idea who the package could be from. I recalled that I knew a guy in China, but we hadn't talked in many years. My pal Ronolulu had recently visited this mutual friend and if Ronolulu had sent me something from China he would have told me so. I talk to Ronolulu all the time. And he hadn't said anything about a package. So I went to the US Postal Service web site and found a Suspicious Mail poster:

1. Don't shake or bump.
2. Isolate it immediately.
3. Don't open, smell, touch, or taste.
4. Treat it as suspect. Call local law enforcement authorities.

So I called the local police and they came over. A really fat one and a really young one. They seemed kind of dumb. They asked me if I had any enemies, any people out to get me. My wife and I were standing in the basement with them. They picked up the package. They shook and squeezed it. They smelled it.

Finally they took it out to the street and opened it:

"Dear XXXXX,

It's been a decade since we saw each other, but the thing about old XXXXXXmen is that we never really lose complete touch with one another thanks to the networks of common friends.

...[our mutual friend] told me you've been ill, and I wanted to send along a little something to perk you up....

...A little over a week ago we started the Year of the Monkey and I went apeshit buying trinkets at several of Beijing's numerous temple fairs. The stuff on sale keeps getting better every year. Enclosed is an ornamental wall hanging sold only when Chinese lunar New Year celebrations roll around...."

Prosperity. Longevity. Peace. Health.

There was no return address or contact information, no email address in the letter. It smelled like cigarette smoke, though, so It was like sitting across the table from my pal. Wherever he may be right now. Hopefully he is going apeshit, in a good way, somewhere at this very moment.

This episode just confirms what my post-diagnosis experience, and the blog experience, have shown: that I already knew a lot of really wonderful people before this sitation, when I was too busy to connect with them.



Sunday, February 08, 2004

A disturbance in the Force

Never think the little people aren't perceptive. Today my 4-year-old was talking to a friend, and in that way kids have of trying to validate their theories, he slipped in that my friend does the same kind of work that "my Daddy used to do." I noticed it, but said nothing. My son apparently is working on a theory that I no longer have a career. On the face of it, this is odd, because a year ago I took a 6-week break and he had no anxiety about that. I have only been away from work this time for less than four weeks. The ironic thing is that in four years of vanishing on my kid every weekday, I felt pain and sadness about going away. I was sad that he would think of Daddy as someone who goes away. Yes, it was nice for him to see a role model of someone working. But basically I wanted to be around him more. Now, in the present situation, He may have overheard some phone conversation, or something, but we have been circumspect. So I assume he knows nothing about a medical problem. When I had several doctor visits in a row at the beginning of this saga, before the blog began, he did ask why I kept going to the doctor. I told him the doctors haven't looked at me in a long time and they want to check me out thoroughly. Around the time of the diagnosis, there must have been periods of lots of unnamed anxiety in our house, and snappy, distracted parents. I know I was snappy and impatient with him to an extra degree. The way I see it is that he sensed the anxiety, and noticed that Daddy went back to work for a week after Christmas and is now not going to work. Alone, either of these might be OK for him to cope with. But couple the Period Of Ill-Defined Stress with a sudden change in the definition of Daddy (Daddy not working?) and his internal Safety Calculator (not a conscious process) may have the impression that Daddy is somehow broken in some way and is no longer capable of being a computer programmer, or somehow no longer welcome at work. When your daddy has been defined as the guy who goes out the door in the morning and comes back after work to have dinner, that kind of change could be unsettling. I think I have already reassured him that I am physically well. Little people this age are concerned about the notion of death and often ask about people who have died or whether they will die. I made a point of carrying him around a lot recently and showing my strength in other ways. A young mind like his may equate strength with health, but regardless of that I just sense, now, that he is not worried that I am sick. So now it appears he worries that I no longer work, like normal daddies. It must be unsettling. Just like it would be if your mom suddenly stopped making sandwiches and cutting them into triangles.

I am just a wee bit tired. I am fighting off some kind of cold germs I got from my lovely daughter (who took 15 steps today). So I did not do the sprint this weekend. But I did find some softer, bigger balls intended for juggling, and was able to get up to 10 left hand catches while juggling three of those. My son has seen me juggle before, but not in a long while, and to him it was new. He seemed quietly delighted. Must be nice to see that your father is a human being and not just some severe automaton. Did quite a bit of walking today, to the hardware store and the Inneffective Supplements store. I was grumbling like the old man I am as I picked up pieces of litter left by kids along the street by the junior high school. I wondered why I did it. I knew I could never clean up the neighborhood even if it were my full-time job. And I could never gets kids to stop littering. I mean, to them, it's not only not wrong, it's a nice solution to a problem: Drop your trash and it goes away. Can't get much more elegant than that. And if they ever do think about it (which they don't), they notice that the trash seems to go somewhere. Maybe a truck from the city sweeps it up, or maybe old people get rid of it. Anyway, the system works. They operate on a more immediate timeframe. More self-centered and short-term, the way you or I would behave if we had some fatal incurable disease that was supposed to kill us in four years. Wait, I seem to have strayed from my point. So there I was picking up trash and wondering why I tormented byself with thoughts of whether it has any effect. I has no effect, except on me, and if it makes me feel good, I do it. I have to keep that in perspective. My buddy dropped up a huge stack of classical music that I will suck into the iPod. I like the music I have in there now, but I am familiar with all of it. I need something new to explore. This should be the ticket. I also started researching what the heck I am taking in these supplements. So far we're hitting the antioxidant theme pretty hard, as well as the theme of preserving your neurons. I'll post the list when I complete it. I also resolved to find a cheaper way to buy these supplements than at the GNC. There's got to be a reputable way to save money on Inneffective Supplements. I receive dozens of spam every day offering exactly that, but I think not.

Here's a question for you techno geeks (maybe Cateye knows the answer): Say you have an AC-to-DC adapter than charges, oh, say, and iPod. If the iPod is fully charged, is the adapter still drawing power? I think the answer is yes.

I had an iTunes question: How do I prepend each of the the track names (e.g. Track 01 through Track 20 or whatever) with the same string, such as the album title? Then I realized that if you select all the tracks on the CD and use the the File>Get Info menu, you can set the artist and album for all of them at once. Then you don't even have to meddle with setting each track name.

Saturday, February 07, 2004

Too Many Pills and CDs, not enough Zs

Just did the apothecary bit and counted out lots of pills to cover the upcoming week. At the end of this week, I will be going off the creatine and ginseng for one week, the resuming for three, as advised.

Amazingly, I still have not researched what most of these pills do. I am hoping one is an antioxidant.

Our little people keep waking up in the night. We are not getting enough sleep. After a while it is corrosive. You become as groggy and incompetent as a nuclear power plant operator.

Lay down for a nap my generous wife provided me (I provided her one recently), and after a while got up and grabbed the iPod. Listening to music is kind of an oppression, if you're not used to it. But I have quickly learned to "ignore" it and let me own thoughts ramble.

Now I am in the study sucking up my CD collection into iTunes. Amazingly, my entire collection and then some can fit on the iPod. I have somewhere around 200 CDs, I think. Now I am hunting for classical music (which which I am familiar, but not overly so). That should be invigorating.

Friday, February 06, 2004

Other ALS bloggers?

I just nosed around the internet trying to find other bloggers who have ALS. I found several people who wrote about it but who don't appear to have it, and some charity stuff. But I only looked at the first page of hits.

My search engine is All The Web, not Google, because Google caved in to the Scientologists and the Chinese Communists.
Gym Report

So for my future reference, here is the gym workout I did today. I suppose that on any given machine I could have done more, but for our purposes let's take today's workout to represent my maximum capability.

Hip abduction (squeeze) - 90 lbs / 20 reps
Hip abduction (separate) - 90 lbs / 20 reps
Leg extension - 50 lbs / 20 reps; 70 lbs, 10 reps
Seated leg curl - 50 lbs / 15 reps
Seated leg press - 150 lbs / 15 reps
Dual-axis chest press - 70 lbs / 30 reps (I've been improving a lot on this one)
Dual-axis pull down - 90 lbs / 20 reps; 90 lbs / 10 reps (quit because of possible muscle cramp)
Dual-axis row / rear delt - 50 lbs / 20 reps; 50 lbs / 10 reps
Dual-axis overhead press - 30 lbs / 20 reps (a big improvement)
Arm curl - 30 lbs / zero reps; 10 lbs / 20 reps (some improvement is needed!)
Arm extension - 30 lbs / 20 reps
Standing dual free-weight collarbone lift - 15 lbs / 16 reps each arm
Despairing butterfly (see Fri Jan 16 entry "Theft") - 10 lbs / 10 reps
Lying down free weight butterfly - 15 lbs each hand / 10 reps

For a metric against the benchmark, I am eager to get out and see what my 100-dash time will be. I fervently hope it will be a few tenths faster than last time. I don't want to see a marked decay.

As a means of affirming my able survival, I have decided to observe 'anniversaries,' of diagnosis. I was diagnosed with ALS by my neurologist on Jan. 13 2004. So one week from now will be my one-month anniversary. I know I am stronger than I was a month ago. And I hope to report that I am faster as well. Oh please, oh please!

A physical therapist said some people have abilities they want to retain, like being able to pick up your kids. I think that's a function of the kids getting bigger ... and more surly. I'm going to lose the ability at some point, but I hope it's not until after they refuse to let me. I want to retain the ability to pick up my wife. No, I mean, literally. I have always piggy-backed her, and she likes it, whether she admits it or not. I do a little rain dance. I have been doing it a lot recently, and it may make her nervous, but it makes me feel good.


Thursday, February 05, 2004


Music is an essential requirement for the human soul. I have been four years now with essentially none of my music. Except for the songs that played in my head. My car, for example, has no sound system. And I am a dad. True, we play kid music, and classical, and the Beatles. But not much. And the experience is just different when someone is asking for juice, and spilling it, and getting sleepy, or cranky. "Hey Jude" is meant to be listened to as a complete song. Not as a taunt: "Here is a bit of the song you would be listening too if you weren't changing a bedsheet right now!"

So I had a nearly religious experience last night when I lay down on the couch after the kids were in bed, and just listened to music. It inspired me. I actually wrote a poem.

And yet music is almost impossible to write about. It's easier to write about sex than about music. I wasn't going to try. My buddy Storm sent me this email in which, rather than try to describe music, he writes about the important part, the effect of music on the listener:

"The first time I ever went back east, I went
to Worchester [pronounced 'wooster']. And I was blown away
by the forests, the endless little valleys, and the thought that
Indians, and trappers and all sorts of people had been wandering
through those woods for so long, like I was walking in other's footsteps,
sharing a moment across time with another forest walker from long ago.
So I get out in these woods at dawn wandering around with a portable
CD player [the height of techno at the time] listening to Beethoven's
6th [the pastoral]. It was like as soothed and balanced as I've even been.
Old Ludwig, dour and brow beaten icon on Schroder's little piano,
smiled at me across the centuries, giving me a gift as wonderful as I've
ever had, something no one could ever take away from me ever again,
something so bold in it's unadulterated celebration of life it made me cry.
There's only a few pieces that have done that for me, and admittedly, I
was emotional at the time, but.... imagine someone who never felt the
inner fire of music like that, whose head had never soared upon high
rallying with the tempestuous score like a bird upon the wing. I hope you
have some music like that, that you keep in your pocket for certain days;
days when you peek inside the pocket when no one's looking, taking
a selfish joy [for no one _ever_ seems to feel the same way about a piece
as you do, no matter how towering or subtle the work], allowing it's
waves to wash upon the shore of your heart, to wash over you, to
almost drown you in ecstasy as you surrender to it's mad irony or
incessant longing or unquenchable desire or merely it's sweet little
portrait of a morning walking in the woods."

It may be impssible to describe music in writing, but Storm pretty much described the effect of it, right there.

I used to run an online magazine for poetry and fiction etc. I produced it like a magazine, in issues, with art. However that became impossible after a while. So I am thinking of setting it up again, but this time as a Yahoo group. That's basically a mailing list that you can subscribe to. And the beauty part is that you can unsubscribe if you don't want to receive it.

Several of my friends are really good writers and have been sending me stuff that deserves wider circulation. This will be my answer.
Off the Ranch OK

As some of you may have noticed, I also use this blog just to make notes for myself and organize my information about ALS.

This, then: The bright and able assistant to my local neurologist says that, yes, they can prescribe medications for me that are being studied in clinical trials. The example we used was minocycline, so her response was specific to that, but my question was a general one. You might think: "How can they prescribe something that hasn't been studied yet? Isn't that illegal?"

It would be, if the safety of the substance were unknown, but minocycline for example is an old and well-understood antibiotic. You could prescribe it for acne if you wanted, I suppose.

Things have to go through safety trials before they can be used in humans. But the issue with minocycline and Insulin Growth Factor is not a safety threshold, they are just testing them to see if they slow down ALS.

And you might get the placebo if you get into the study.
Other guy

Bushra located this online diary:

BBC News Online science and technology writer Ivan Noble was diagnosed with a malignant brain tumour in August 2002 and is currently recovering from brain surgery.

Since his diagnosis, he has been sharing his experiences in an online diary.

"I have had a real setback.

I had a brain scan on Monday and it showed that my tumour had regrown a big chunk, despite the operation I had only two and a half months ago to remove it.

It is a big blow.

We hoped that the operation and the drugs that went in with it would have kept me stable for a lot longer.

At the moment I am having trouble coming to terms with it all.

Our thoughts, of course, are on our growing baby.

There are five and a half months to go before the birth of my second child, but what does that mean when my tumour is growing at such a rate?"

I don't know what to say. I feel awful for the guy. Probably the way a lot of you feel awful for me. Maybe Compartive Suffering is unhealthy, or unwise. But I sure feel lucky that I'm not going through what he's going through. Sorry to say that, but it's true.

I just want to be treated as normal. I have not read all his stuff, but maybe he does to. I don't know.

Wednesday, February 04, 2004

A fighter

Some of you have relayed to me impressive stories of people you know who have fought back against serious diseases. And those stories inspire me. A friend send me this one, about his grandmother, who passed away only very recently:

My grandma has suffered from a brain tumor for most of her life. It may have started one of two ways with her. When she was a very young girl, living in rural Poland in what is now the Ukraine (in fact terrifyingly close to Chernobyl), she living in a convent. Both her parents were dead, and at this time she had no knowledge of her family history.

To digress somewhat, she was about to be adopted by a rather rich noble Polish family, but instead she ran away. In the process of running away she broke into the records room and discovered that she actually owned quite a reasonable farm near the convent, and that her two brothers (who she never knew were her brothers) were keeping all this secret with the help of the nuns so that they could keep the land. She started a legal action against them, walking 40km through a thick forest every day to the nearest town with a court. Eventually she won the land which was rightfully hers, and did well for herself as a farmer. She was so successful, in fact, that her house was the first in the area to have glass windows. Unfortunately very soon after that the sky suddenly filled with planes and tanks came roaring over the hills. Her description of the invasion is rather amazing - much of rural Poland at the time was very isolated, and they had no idea that war was imminent. Furthermore, they had never seen a plane before in their lives, and even seeing a car was an event much talked about. Everybody, of course, was still using horse and cart (as indeed they were back on our farm near Krakow the first time we visited in the early 90's). You can imagine how horrifying an event the invasion must have seemed.

Anyway, after that long digression, back to the point. One day whilst she was at the convent, she had wondered off into the next valley and was sitting by a tree. An old man, well known in the area for molesting young girls, crept up and tried to have his way with her. She resisted, in the course of which he inflicted rather savage injuries to her head which his heavy wooden walking stick. Of course there was no penalty for this old man - there was no police in such areas, and the influence of the church had rather managed to twist the blame onto the girls rather than the man. She spent several months in hospital recovering. Apparently her injuries were quite severe.

The second incident which doctors feel could have caused her tumor happened at the end of the war. At this time she was in Germany, having first been captured and used as slave labour by the Russians, then the Germans, then the Russians, and now finally the Germans. Over the course of the war she had been sent to such varied places as Kazakhstan (where she survived, although on the brink of starvation, by eating raw fish; she now has an intense hatred of fish) and Auschwitz (which she survived by escaping en route - as did my Grandad, on two occasions).

She had been freed from the farm she was working on by the Germans there, because they were aware that the Allies would be arriving soon and didn't want the damning evidence of their actions hanging around. She hid in the woods near the farm and at night would break into the building and steal food. Justifiably she felt entitled. One night she was returning with a huge cheese when the Allies arrived. She was caught in a little battle. The story goes that she crossed back to the woods regardless of the danger, carrying this huge cheese above her head, bullets whizzing around her. When she got back to the woods, unhurt, the cheese was peppered with bullet holes!

A few nights later (the next night?) she was in the local town, and the Allies were there, getting drunk (as you would expect them to do) and celebrating. Some drunken troops in a jeep drove straight into her without seeming to see her, leaving her for dead on the road. She ended up in hospital for several months. Her skull had been split open and mud and earth had gotten deep into the wound.

She was first diagnosed with a brain tumor when she was living in England, and my dad was a young boy. At the time she was working 17 hour shifts in a cotton mill, but her coordination was rapidly going, as was her ability to construct sentences (she would know what she wanted to say, but would be unable to say it). She was also suffering from enormous head-aches. She was operated on. The tumor was at a very advanced stage, and the doctors didn't think she had much of a chance, but she survived. As a consequence of the operation she was paralyzed down the right-hand side of her face, but that is really only visible if you look at her mouth. Only one half expresses itself.

She had another operation around 25-ish years ago - the tumor had grown back, and she had yet another operation a few years ago. This final operation was, of course, during my life time. She was very old then (late 70's) and the doctors didn't fancy her chances. In fact they were certain she would die. But she didn't. She made an astonishing recovery, and after the operation she was like a new person. She would interact fully, talk profusely, and generally was like an astonishingly healthy old person (for she has always been incredibly strong physically - her hands have a grip like iron - and I imagine she is mentally as tough as old boots).

Unfortunately recently her health has collapsed rather dramatically. A couple of months ago she was admitted to hospital. It seems that her tumor has grown back, and this time the doctors aren't prepared to operate. They say she is so old she will certainly die (she is 85). Instead they gave her lots of drugs, and plenty of steroids. Just before Christmas she was allowed to return home. We moved her bed down stairs (for steps were impossible for her) and the hospital provided a commode and two nurses who would visit every morning and evening to dress and undress her. Whilst we were in Warsaw, on Boxing Day, she collapsed and was rushed back into hospital. She's still there now. If she survives to see 2005 that would be a miracle, and I'm not sure I would want it to happen. She is incapable of speaking coherently, even in Polish or German, and she requires help eating and going to the toilet. She seems incredibly sad and frustrated. The doctors are filling her with tablets to extend her life as long as they can.

Anyway, although that may not be the happiest of endings to my story, you can see that really there is a reassuring theme throughout. She never had the benefit of modern medical treatment in the crucial early days. Every time the tumor has been caught in an advanced stage - particularly on the first the third occasions. She survived a very serious operation three times, the third time as a very old woman. Each time she made a full recovery and became her old self.
iTunes is now busily sucking songs off of some of my favorite CDs, so that the aforesaid songs can be loaded onto the iPod. ("amoeba" by the Adolescents is worth a listen). Today my lovely wife and I had a run and went to the gym. I did my usual lifting (after several days sans lifting), and noticed I was doing about twice as many reps as usual. (I still have not written down what I am actually doing, but I will, and I will enter it in the blog). I attribute the improved lifting performance to my history of lifting since the diagnosis, and to the DHEA I have started taking. Quite frankly I think it is mostly the DHEA. In which case, then, yay!

I went to the large bookstore chain that is driving out the local independents, to get a Nolo Press book on making your own will, and I found the aforesaid. (I already have a will, witten, signed and printed, in my file cabinet and elsewhere, but I want to make a better one. One that might stand up in more courts than just the one at Pooh Corner.) But I also found a book on how to file for your own patent(s). Briefly the Should Bees enthralled me and I listened to their buzzing: "You have too many book already in a pile at home, and you made a vow t o finish them before buying any others!" Then convinced me for a moment. Then I remembered the whole ALS thingy and figured the best therapy is to be surrounded by things you want to plow through. Hence my profusion of projects. So I bought the will book, the patent book, and "Black Hawk Down." No, I never saw the movie. I figure that the book out to get my blood racing and my jaw clenching. More androsterone. Ahhhh...
The iPod is here! And I got it up and working in less than half an hour of actual effort, but this was spread across the better part of an afternoon due to various family obligations.

Second riluzole tablet went down withou a fuss (so far). The literature seems to indicate it takes less than two weeks to build up to what I call body saturation.

Looking in my pill organizer, I appear to have missed a few Inneffective Supplements a few days back. There we so many pills in there that they stuck.
Rock on
The xxxxxxxxxxxx says everything is OK with my xxxxxx. Good. And those horrible pains are not uncommon and are well-understood.

Tuesday, February 03, 2004

Riluzole down the hole

Not long after the lunch of waffles, sausage, egg, and avocado-cheese-tomato sandwich, I took one of the rilizole pills. Normally you are supposed to take one twice a day on an empty stomach, 12 hours apart. But the drug can cause nasty things like nausea and vomiting, so to get you used to it gradually, the clinic advises you to start with one, after a meal. The guideline then calls for a peroid of gradual adjustments until you are taking them as described above. As a departure, my wife knew about my taking this pill, beforehand, because I asked her in a rare moment while the kids were both napping. The boy is sick with some kind of viral fever. The baby is fussy because she is teething and trying to learn to walk.

You might stand agog at the notion that my wife must go to this blog to hear most of my status notes. But when you have two kids, either they completely prevent adult conversation (I mean prevent), or one or the other of you is just too tired, panicked, busy or distracted to talk. Parents, at least the two I know, rarely talk.

Right now the kids are playing with/hassling their mother and their grandmother. I pampered myself by taking a shower and making this blog entry. Today I installed the other light fixture in the bathroom. If you are not impressed, just picture what it replaces: a hollow metal ring, semi-rusted, with a huge light bulb sticking down out of it. That was the result of my accidentally breaking a very nice fixture we previously had. I was uncareful with a broom. I don't know how long we lived with that bare bulb. A year? Now it is fixed. Yay, Daddy!

So far no nausea or vomiting. I did not do a workout today because I didn't want to stress my system while the riluzole was in it and while I was fighting off whatever bug my son has. But we did go for a walk. And saw abother spectacular rainbow.
Cholesterol madness
Recall that perviously my cholesterol picture was this:

Triglycerides: 250, with normal: 130-200
Cholesterol 284, with normal: 130-200
---HDL (high-density, the "good" cholesterol) 61, normal: 40-90
---LDL (low-density, the "bad" cholesterol) 181, normal: less than 100
---VLDL ("very low density?", very bad?) 42, normal: 0-42
The lab report also comes with a "CHD" number, a cardiac arrest risk ratio. Mine was 4.7 on a scale of 4.1-6.6

So then I stopped eating eggs, and about a month later got it tested again:

Triglycerides: 134, with normal: 130-200
Cholesterol 248, with normal: 130-200
---HDL (high-density, the "good" cholesterol) 55, normal: 40-90
---LDL (low-density, the "bad" cholesterol) 153, normal: less than 100
---VLDL ("very low density?", very bad?) 40, normal: 0-42

So the triglycerides came way down. And the good cholesterol came down while the bad cholesterol stayed up. And the because they do a division of bad by good, my cardiac risk factor has moved down slightly to 4.5 on a scale of 4.1-6.6, which is still in category of the "Average CHD Risk." As my doctor said, average for an American is not a place you want to be.

So what does this tell me? Not sure. But today for lunch I had two toaster waffles, three pork sausages, one egg, and an avocado-cheese-tomato sandwich. With plenty of mayo.

I am wiping my mouth with a clean sock.

Monday, February 02, 2004

My back, my hands, and this house

This is our first house, and we moved in in 2000. At first, the smallest things, such as putting on a door sweep, intimidated me. But this house (and a friendly neighbor who worked for years as a contractor), taught me a lot. I have 2/3 completed a seismic reinforcement of the downstairs which involves drilling and setting anchor bolts into the foundation, and nailing up plywood sheer wall and ceiling.

But actually the job I am proudest of, my first big job, happened the second summer we were here, when I knocked down the rotted old porch, tore back the stucco and stucco wire until we discovered the extent of the dry rot, and then (with the advice and often the help of my friendly neighbor), put it all back together again. Stronger. I learned carpentry, stucco work, and a bit of plumbing along the way.

Those of you who have met me know I have slender, ladylike hands. And due to the recent atrophy, the right hand now looks manly to me and the left hand ladylike. But I am proud of these hands. I am proud of all those days I spent in the hottest part of the summer, up on a ladder, gripping tools and tearing into the house despite my slenderness, despite being a wispy, book-oriented person. Forget that. This was my house and I wanted to learn how to work on it and no one else was going to touch it. I used the morning shade when I could. Got a few neck burns. The days were hot. As the project dragged on (I was working during the week and working on the house on weekends), we wanted to get the house closed up before the Fall rains. Some days I practically crawled into bed because I had worked my back so hard, or my arms. Putting up stucco is not light work. Especially when you have no idea what you are doing. It was dirty and sweaty and sometimes a bit bloody but I am immensely proud. I got the house closed up just before the first rain.

Later I took a long six-week break to do the seismic project, before the second baby came. While I was doing the seismic project I missed programming. When I went back to programming, I missed working on the house. I fantasized about cutting plywood with a circular saw. Then the second baby came. She is a miracle. Like the first one. She is starting to take her first steps this week. Step-step, boom! Step-step-step, boom! She turned a year old and along came this ALS thingy.

But I still have my power tools and a lot of plywood to put up (because the seismic job it not yet done). So I intend to go down there and start cutting and nailing. It's a physical job. Lots of hauling and shoving. A little kicking. How would you get a 4 foot by 8 foot piece of plywood up against the ceiling and nail it in? I built some simple pole braces out of two-by-fours which are just shy of ceiling height. Then I nail with a pneumatic hammer.

I should be able to finish this job. It will make my body stronger, and my spirit too.

This week I crossed a threshold without knowing it. Our light fixture over the medicine cabinet was broken. It would stay on and not go off and the switch was internal to the fixture itself and not something you could repair. So I turned off the power at the breaker and put up a new light fixture I had bought. After the job was done I realized that I had just violated my declared rule of never working with electrical. I had previously said that the risk was too great and I was too much of a spasbo.

Putting up the light fixtures in the bathroom has got me in the mood to complete the seismic job. And once I do that, it won't be long before you hear a long of drilling, cutting, and hammering coming from my house. I'll finish the job with my back and my arms and my legs and my hands. And just a little cursing.
Just got back from a run not two minutes ago with my lovely wife (and for those of you who have not met her, she is lovely, both inside and out). It started to rain during the run and not lightly. My lovely wife is also an twiggy sort of Amazon who was on numerous athletic teams and winning events not more than nine years ago. Since then she's been busy with other things such as me, and kids. But mark my words, she will be out there and winning trophies in her age group (and maybe yours, too!) within a few years, when the kids are bigger. Then the kids can win trophies and bring them home for us to polish.

Anyway, I got off track. She is not one to let rain deter her from running. So we both ran in the rain and that was nice. Also my mind appears to be drifting towards that melodramatic poetic state, because as we ran, there was a train, and I thought of this metaphor too cheesy to put in an actual poem:

I ran towards the on-rushing train,
and lived.
as it passed overhead on the platform.

And then, poetry aside, we saw a rainbow. I stopped my lovely wife and kissed her and repeated part of our wedding vows. And then she pointed out that it was a double rainbow, with a fainter one off to the West.

Those of you who are planning to read this blog until I die are in for a very long blog.

I picked up the riluzole today. I am not certain yet because I have not looked it up but I believe that the trial was conducted on people with advanced ALS. And that it extended their lives by three months is pretty impressive. Here I am at the beginning stages (jogging with my wife!) so maybe I will get extra years out of it. During which time The Cure arrives.

The thing about the Stephen Gould essay was that he said he had so much to live for, so much he was interested in. I feel the same way. If you take only the space program, there is reason to live. The Mars rovers are fascinating, and there is a wave of spacecraft that are going to be exploring the Solar System in 2004. That alone should keep me going for this year.

Not to mention all the history taking place right now (much of it awful, but still, as an acolyte of History, I am fascinated).

Not to mention my own programming projects I want to do. And a little bit of writing and editing.

And just the fun of researching this disease. I meant it when I said I intend to give myself a graduate-level course on ALS.

Plus all the technological toys that are going to be coming over the horizon. This is a very interesting time in which to live.

And I have not even mentioned the joy of being on a journey with my wife and kids. (And hopefully grandkids!).

Lots to live for.
Got Gould?
Thanks to Anna (who you don't know) for the link.

Sunday, February 01, 2004

Buy buy buy!
The 100 blank DVDs should be coming any day now. Tonight I ordered the iPod, which should be here in a week. And I ordered the ALS guide to patients and families. It will be a starting point. I wasn't to research this topic as if it were a graduate-level course, as if my life depended on it.

Actually, it is amazing how lackadaisical I am about this, even when my life really does depend on it. I have always been just a little, tiny bit lazy. Not willing to stress myself too much. Maybe now my life depends on maintaining that attitude.

I plan to wander into the local mega-bookstore (the national chain that is driving out local independents) and see if I can find a Nolo Press book on making a will. I have one already but it was just me, typing.

I encountered this fellow, a very nice guy, and conscientious and caring, and at one point I guess he mentioned his military service and I thanked him for it. The conversation went on to other things. We both like some of the classic 1960s rock bands, and he must have figured I was a right guy. And I am. But not quite the way he figured me. "I don't know how much of a Clinton hater you are," he said, "but I got this amusing email. It's kind of fun." And then he read from a sarcastic thank-you note circulating on the internet that contained an allegation about Clinton freeing a terrorist who later flew a plane into the WTC on 9/11. I had run across this one months or maybe a year previously and had already researched it and found it to be false. "That would be sensational if it were true," I said, "But I looked into it and it's not." I asked him to print out the email for me and he did. A few days later I emailed him:

Thanks for printing out the "Thank You Bill and Hillary!" email for me.

I agree with you that the thing about Bill Clinton and Warren Christopher insisting that the Israelis release the Egyptian 9/11 hijacker Mohammed Atta would be a big deal.

But it looks like that never happened. Some Jordanian guy named Mahmoud Atta (not Mohammed Atta) was extradicted against his wishes by the US and sent to Israel. The Israeli courts apparently later released him on a technicality. The censorship of the idea that he was a 9/11 hijacker apparently relates to the fact that it was untrue.

The Anti-Defamation League explains it like this:

In fact, the perpetrator of the April 1986 attack was a 33-year-old Jordanian and a naturalized U.S. citizen, who went by the name Mahmoud Atta. The Mohammed Atta behind the 9/11 attacks would have been 18 years old in 1986 (he was born in 1968) and was an Egyptian citizen. The Boston Globe, which was one of the few newspapers that printed this rumor, issued a correction a few days later and said their original report was "a case of mistaken identity."

The parts of the email about blow jobs is fair game. Now I am real curious to learn about the White House silverware and the vandalism.

After this I went on about my business of moping with ALS, and wondered whether his response would be something like one of these:

  • "Thanks for pointing that out! I emailed my buddies who are on this list to let them know the facts. Sometimes I guess people get carried away and just send out anything that sounds bad about Clinton."

  • "OK, that may be true. But the spirit of it is correct. Clinton did all kinds of things like that, that we never hear about because of the Media."

  • "Got your little note. You remind me of those whining Liberal lawyers always picking over the rules to find a weasel way out. Get this: CLINTON SUCKED! THE LIBERALS SUCK! Don't annoy me again with your feebleness."

Given the current state of political discourse in America, any of those could be likely responses. I had my hopes up for response number one, because he seems like a right guy, just a bit misinformed.

So what was the response? Two more forwarded emails ridiculing Liberals and Clinton.
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