Thursday, September 30, 2004

Work out

I checked your blog and read the entries that discuss working out. I found them somewhat helpful. Are you willing to give me a big picture sketch?

Yep. I work out in order to keep the muscles moving. Not really to build strength. I suppose that if I worked out more, it would be OK for me to carefully and gradually see if it would be OK to build strength. But I have so many other distractions an diversions (often good things) that I don't get to the gym that much.

e.g. I used to be able to run five miles, but now two is my
maximum OR
I can still run five miles, but it takes a bit
longer OR
I can still do it, but it is inadvisable because I
get bad cramping from it OR

I don't think I am in a position to run five miles, at this point. This is largely because I haven't been running much. Again, the distractions, illness, travel, etc. I could probably run two miles at a moderate pace, but I haven't run much since before the glutamate poisoning incident with the protein powder. And I like to think that I could work up to a 5-mile run over a period of months. My running is effected by a sniff left knee. But I haven't been running enough to try to work that out or explore that.

In terms of weight strength, are you about as strong as you were before ALS, a little weaker, a lot weaker?

I am stronger than when I was diagnosed, but at that point it had been a very long time since I worked out. I got stronger as a result of those workouts, and I retain much of that strength. It was just that I read something scary about muscle cramps and overdoing your workout in ALS, and I decided to back off.

What do you mean by a light workout --- one set of each exercise, 20 reps max?

Yeah 20, usually with a very low amount of weight. Like I pressed 30 pounds on the arm press machine. Previously in my blog I wrote about pressing 90 pounds. But that was only ten reps. For me, 20 reps is a lot, not a lot of work, but a lot. I used to lift just for strength gain and so I used heavier weighhts sand fewer reps.

Is getting stronger a goal of these workouts?

Not right now.

Is weight gain a goal?

Well I am above 135, which for me is very good. So I am not trying to gain weight, just maintain.

How would you compare your endurance from before ALS?

Not nearly as good. I used to get out on the basketball court and just go for hours at a time. Or a 5-mile run in the hot sun. That was endurance.

Do you tire more easily?

It's not so much a feeling of being tired, as my muscles sending me signals that they don't want any more work right now. I guess that means my cardio-pulmonary system is still in good shape, but my muscles aren't as well off.

Your email reminds me that I really need to put more focus on exercise. I have been letting it slip. But I suppose it is a responsibility that I have to myself and other peopple.

Thanks for the email buddy.
Fire hazard

Meaning no disrespect to anyone, have you ever noticed how women tend to be into scented soaps and candles? Weird, huh? To me, a candle is a smelly, smoky fire hazard. And I don't want my soap to smell, I want it to be silent in the olfactory realm.

I will try to convey this to you by analogy: Imagine if your tap water were colored, and left an tint on anything it touched. "But it's festive!" I would say.


Wednesday, September 29, 2004

Night attack

It's weird how, whenever I exercise and my body presumably needs to get a good night's sleep, the kids disrupt it. Last night my son came in around 3 AM (not quite sure) and woke us up. My wife got him back to bed. Subsequently, the baby girl cried out and woke me up six more times. My wife says that the girl got herself back to sleep each time and did not need to be attended to. It's not as though she does this every night and I just happened to notice last night.

In the morning she climbed on the bed and patted me. She's an angel. And the boy is a fine young fella.

My muscles feel, not tight or sore, but pleasantly taut. It's interesting that such a light workout (that I barely feel when I do it), can still make such an impression on my muscles. I guess I must be doing things just about right.

But I need to work out more often. And go for short, mellow runs.

I have been neglecting my exercise quite a bit due to illness, travel, and computer-related activities such as chess, a short story I am working on, email correspondence, and various other projects. I need to exercise a more.

Today I got that exercise by playing with my daughter while her mom went to a writer's group. Then I took the litle girl over to the house of her toddler friend, where they are babysat until the afternoon by a nice lady both families have retained for that purpose. No, it's not every day, just three times a week. It's good for her, and for our sanity. Witness me typing in this blog.

The exercise was in carrying her back to the house after our walk, sitting on the floor and getting her shoes on, getting her into the car seat, and schlepping a big diaper bag and bag of food and clothes for her, while carrying her though the house-construction zone to the liviing area. It would have been much easier if I had not worked out at the gym yesterday. But because of that I was feeling it.

I have mentioned that one of my goals it to get her used to me getting her to bed on alternating nights, so that my wife and I have only one child per night. Right now, on my wife's nights with the boy, she does both kids. I always help by getting the boy bathed and dressed in his pajamas. But still.

Anyway, I am proud to say that yesterday I not only got the girl down to her nap, but also last night got her bathed, and ready for bed. I put her in bed and sang to her, and said night-night, which she is accustomed to, as I often do it when getting the boy to bed and she is still awake. She was fine with the whole thing.

So if all goes well, my wife and I will be switching off each night with the kids.

My son, who used to be a champion shower-taker, has for the past several weeks become a bath-only man. Send in the Marines.

CJ and her two kids are coming to dinner at our house tonight. When I cook, I tend to get all panicky about the need to synchronize everything so that it serves at the same time (and on time!) So today I started early. I began soaking the lentils (for dal) at breakfast, and then did the prep cooking after lunch. Now the fridge contains the dal, the chicken masala ready to cook, and the palak paneer (spinach with cheese). My instantiation of these recipes is probably a complete betrayal of what the recipes intend, but I know it will at least taste good. The paneer we had once before, and my kids (and wife) liked it a lot. The dal is a first, but I tasted it just now and it is fine if it has enough salt (which is easily ensured). The chicken masala (my version) is incredibly simple and will be a hit with the all kids. There was no naan bread at the local hippie store that I went to. I don't feel like getting in the car and picking up any, either. Good enough is good enough.

9:15 PM -- The meal was a success. My wife ate three plates. CJ praised it profusely, although in my opinion it was adequate but far from delicious. I forgot to add the cream, for example. But CJ's kids ate a full plate and a half plate respectively. My kids didn't touch it.

Tuesday, September 28, 2004

Lung capacity

Now that I am over my cough, I tested my lung capacity several times just now, and while I have in the past been able to hit 5000 or 5100 mL, today it was as follows: 4000, 4250, 4250, 4250, 4500, 4600, 4550, and finally 4500 mL.

Could be a difference just for today. Could be the lingering tightness from the cough, which is basically gone, but which still sometimes makes me wheeze. That's what I think it is, but it could be an ALS-related decline in lung capacity. We shall see.

Then again it could be operator error. The tube came off of the thing on the fourth or fifth try, and I had to jam it back on.

Similar operator error: In the gym today I weighed myself at only 132 pounds or so (after subtracting for clothes and shoes). That worried me. Then realized that the weight for 100 pounds was slightly out of the notch. Once I fixed that I weighed in at 136 or so (after clothes and shoes).


I went to the gym this morning and did a light workout. I do 20 reps on each machine with either the lowest or next-lowest amount of weights.

I recently was given some stuff my mom had collected over the years: art, school pictures, etc. Also in there was an unopened red recruiting letter from the Marine Corps (this was in 1981, and the high school provided the recruiters with your home address and phone number). On the letter I had written down the moves for a couple of chess games I had played against a chess board with a chess-playing computer chip inside it. That chess game was probably the coolest material gift my parents ever gave me. I used to play it all the time. It would be fun to review the moves I made, but unfortunately the notation is impossible to interpret. For example, black moves first, and then the queens appear to be on the wrong colors. I will continue to try to work it out, and let you know if I do.

Maybe the chess computer was intended to cleanse my dad. Not sure.

My father taught me to play chess. He said we'd make a regular practice of it, a ritual, to play every weekend. I don't at this point recall how old I was, but let us assume 10. He beat me all the time. Not that he was a good chess player. My impression now is that he didn't even know basic tactics. Anyway, his tricks sort of sank in, and one day I found myself playing to thwart each of his tricks before it arose. I started laying tricks of my own. They were pretty simple, like lining up my bishop on the pawn protecting his rook and waiting for the pawn to move out of the way. Most important of all, about this game, was my new-found sense of the value of patience, and of gradually increasing the pressure. I won my first game against him, and to his credit he made a BIG deal of it, he and my mom both praising me. Then, using the same approach, I won each game after that. Probably four more games. Then, the next weekend, I said "Dad, let's play chess!" and he walked away, saying, "I'm not interested in chess anymore."

I still remember looking at his retreating backside when he did that.

Monday, September 27, 2004


My brother-in-law and I were sitting in the chairs in the back yard when I told him about the guarantee on the new hose I'd bought. If it displeases you for any reason, says the packaging, you can just clip the two ends and mail them to the maker, who will send you a new hose, no questions asked.

My BIL said that at a hardware store you can get new hose ends which you can easily re-attach, and so there was money to be made in clipping the ends, getting a new hose, selling the new hose, and replacing the ends on the clipped hose.

I complimented him on the beauty of the idea, but wondered if they might keep track of returns, and object after a certain number. I also said that if I were the hose maker, I would "go out of business" every few years and re-incorporate with the same clip-ends gaurantee, thus rendering the old mailing address and guarantee useless.

Sunday, September 26, 2004

Brainhell, the book?

A friend has encouraged the notion of brainhell, the book. Not sure the marketplace of ideas would accept that, because brainhell the blog has barely any readers (but I do love you). So, hmm. Who'se gonna buy it? The vast numbers of people with ALS? The disease is too rare and the mortality curve is too sudden. Maybe smoosh it out into a general life-is-precious type of tear jerker? "Tuesdays with Maury" already did that. (Still haven't read it, despite being the guy with ALS). Maybe that was "Tuesdays with the Maori". Anyway, it works better if you can write about the person, and all the wisdom they have, and how angelic they be, and linger, as the famous poet once wrote, over the "agony in chalks." It's hard to be a tragic saint in first person, unless you're David Sedaris.

So yeah, maybe something nearly self-published, like a Print On Demand thing. I consider POD books "nearly" self-published because, while the author does pay to put it up on the server, the readers are the ones who order and pay for the professionally-bound copies. They look like real books. I know: I ordered one once. It was by the right-wing ignoramus who thought that diplomactic immunity meant that ambassadors to this country can abduct and murder our little Christian girls with impunity because they have ... diplomatic immunity.

Anyway, the point being that I don't wind up with a basement full of books. And I actually make money on the copies that sell. Not that, let us just be clear: Not that writing is about money. Very few people write books in order to make money. There are a lot better ways to make a lot more money.

Saturday, September 25, 2004


During the diagnosis process, they asked me if I napped. I said no. I still rarely nap. I read later that sleepiness and falling asleep around friends or family is a sign of ALS. It goes like this: Your breathing muscles are weak, and so you don't breathe well when lying down at night. So your sleep is of poor quality, and you feel sleepy during the day.

Well, I don't think my breathing or sleep are effected by ALS (though my sleep is affected by going to sleep too late and the baby girl waking up too early). You have to be farther along in the progression than I am for that to start to be a problem. I haven't done the breathing volume test in a while, due to the bronchitis and cough. Maybe I should make a point of it tomorrow. But I predict that the result will be reassuring.

But I do feel sleepy in the evening.

Oh yes.

Looking forward to bedtime. But I need to get the boy to bed.

Friday, September 24, 2004

Toe report

I remember on Christmas when I hadn't been diagnosed yet, I took my mom and sister aside to tell them about my problem, and showed them my symptoms. This included the left-side leg and finger slowness, but also a comparative display of toe wiggle speed, right and left. The left toes were slow, but could go up and down as a group, to the full range you would expect. The could do the wave.

Today I tried that again and the left toes basically don't move, or to be more accurate, the seem to want to move, and they shift by a few millimeters, and then if I keep sending the signals: Up! Down! Up! Down! ... then after a while they start moving up and down as a group. But not as far as at Christmas.

This doesn't bother me. Call me a crackpot, or in denial, but I blame my ALS progression on two things: sleep deprivation, and illnesses such a colds and flues. So my denial construct is that I don't progress at all, save for those two factors.

And even if my progression were a linear thing not related to those two factors, it's taken nine months to paralyze my left toes, and even that's not complete. Plus my left hand is slower and less capable than it was. But, assuming that rate of progress, I could well be still walking 10 years from now, and it could be decades before this thing kills me.

Could be. Or it could be the gradual overall weakening of the sand castle leads to it washing away in an instant.

We Shall See.


Wednesday, September 22, 2004

The absolute worst thing

My lovely wife found an interesting radio essay by a guy who has ALS. I added it to the right side of this page as a permanent link.

One thing I take from his piece is that he laughs at Spielberg moments, which are generally touching and heartfelt. So I am not the only one whose soma laughs at inappropriate times. Usually I grin or smirk when someone is telling me something serious. It's the last thing I want to show. I think it will offend someone.


Tuesday, September 21, 2004

Crater Lake

Crater Lake, Oregon is a place which the locals say has two seasons: Winter and August. The crater sits on an extinct volcano over 7,000 feet high. My wife and I didn’t really think of it in those terms. I pictured a crater at sea level. We got there on a sunny day and went on a hike the next day, which was brisk in a pleasant alpine way. Then it snowed the rest of the days. We stayed in the Lodge, which was nice. And fortunately my lovely wife had packed a few warm things on a feminine hunch. And we bought a few more warm things at the store there. And we had fun in the snow and it was the first time my sweet daughter, now 20 months old, had ever seen snow.

The boy had a good time too. Twice while we were eating in the lodge dining hall, people came up to us to compliment us on how well behaved our children were at the table. And they were. The baby girl fussed once or twice due to the usual factors of hunger and tiredness, but was consolable.

We were a bit worried about driving down the mountain, not having brought chains, but the snow was only moderate, and the day we drove out was warm. And my lovely wife has experienced a lot of snow in her travels, including driving a van full of many people quite a long distance in a blizzard. So despite the fact that I believe I can do anything better than anyone, she drove us down the mountain.

For lunch, we stopped in a profitable roadhouse filled with arcade machines and lots of tempting gum ball machines dispensing toys and garbage to children. The sound system played bad contemporary music quietly enough. We ate. A three-year-old boy whose face seemed to me a mixture of bewilderment and pugnacity ran around the machines, picking up the plastic guns and shooting at the demons, even when he had no quarters. His father gave him a dollar, at one point. The boy ran back explaining something to which his father replied, “You shot the bad guy? Good.”

My kids sat there in their bland clothing bearing no trademarked characters, with their neutral neck-covering sun hats still on, innocently eating their food after having accepted our explanations that the things in the gum ball machines, and the loud, flashy arcade games, were not for us.

CJ, who I think is the hardest-working parent I know, has pointed out that people, especially in our area, get so righteous and holier-than-thou about the ways they raise their children. So, as a disclaimer, let me assert that I’m not saying our way is better, I’m just saying I notice that it is different. Not at the lodge, but in the hotel we stayed at on the way to the lake, and on the way back, there were two TVs per rented room. It was hard work unplugging them. And then, guilt-stricken that the housecleaning staff would have to plug them back in, I did so myself. And the microwave. And phones.

Before we left the mountain, I had chipped the snow and ice off of the car windows using a plastic frame used to hold promotional material for the lodge. The car was covered in snow, but not buried. Like Eyore is in the second picture of the series of three in the “Pooh Builds a House” story in A.A. Milne’s The House at Pooh Corner.

In the car on the way back home, my lovely wife read this story to the kids. She held up the pages that had the pictures, so they could look. And that is the end of our tale, which was good enough for us, in our own small way, I suppose, until we get my son a Game Boy and buy a personal DVD player for my baby daughter to watch Barbie videos on, while they travel.


Wednesday, September 15, 2004

Labor vs. leisure

Did I tell you my local neurologist was cool, or what? He responded to my email about the labor vs. leisure class distinction relating to the "extreme athlete" hunch regarding ALS causation. Most other doctors would merely sniff in a superior way and ignore patients' theories. Not mine. I have edited the emails only to leave out identifying information, and crude sexual jokes:

-----Original Message-----
Sent: Tuesday, September 14, 2004 4:37 PM
Subject: extreme athletes


Regarding the idea of extreme athlete water intake leading to an
accumulation of trace toxins in the motor nerves, you'd think it would
have shown up, historically, in a difference in ALS incidence between
labor classes and leisure classes. Hard labor, and slave labor, are
extreme sports.

From: doc
Date: September 15, 2004 7:58:11 AM PDT
To: brainhell
Subject: RE: extreme athletes

Maybe it did...then again, labor and slave classes probably didn't live
into their 40's, long enough to get the disease and it wasn't id'd til
the 1860's anyway.

From: brainhell
Date: September 15, 2004 9:07:05 AM PDT
To: doc
Subject: Re: extreme athletes

Good points. But in the post-Civil War era there was a long period of rather intense manual labor (without the benefit of strong trade unions), and a leisure class to compare too. It's true that people in those classes would tend to be overlooked, and not get the best medical care, or diagnosis. Probably these people would be called lazy, or lame. I had a gay friend who described working in a bakery with a bunch of other gay people, and how they used to make fun of this one guy for getting sick all the time, and saying he was tired. That was in the early-1980s. Later, my friend was mortified that they may have been picking on someone with an early case of AIDS.

The incidence of ALS is pretty low anyway, but there may have been some chance to observe a difference in leisure vs. labor classes. And in much of the world to this day there are people who are essentially coolies, working with their bodies all day. One would think it would show up.

After lunch we begin our road trip.

On the way back from dropping off my son at prechool this morning, I saw some bushes where someone (may I presume teenagers?) had stuffed a lot of trash, fast food wrappers, and beverage containers into the bushes on both sides of the sidewalk. This is between the high school and the middle school, a place where lots of kids pass very day.

I almost kept going, but then I turned back, and picked up all the trash. I walked home with ants crawling on my arms. I put the trash in our bin and washed my hands thoroughly.

My thinking was that, when those kids made a display of their littering, they were doubtless going to stroll by later the same day in order to enjoy it. My thinking was to deny them that pleasure, and maybe unsettle them a little bit. I don't imagine I could shame them, but just for a brief instance they might wonder why someone (some adult?) would so rapidly clean up the mess. It would perhaps give them the momentary impression that they do not understand the motives of all the actors in this world.

Or they might think there was some kind of city janitorial service that routinely cleans up litter. I was not a litterer when I was a kid (I was a smartass in lots of other ways), but that was my theory when I saw all the litter by our schools being cleaned up. It never once occurred to me that neighbors were gathering it.

Tuesday, September 14, 2004

Incontinent giraffes?

We're getting ready for a trip out of state, so there are a lot of details to handle before we leave tomorrow. For example, I went to the local neurologist today to have him re-do some paperwork that someone else had goofed up.

I mentioned that he was much more sympathetic than the neurologist in the movie "Garden State," and he said he really liked the movie Eternal Sunshine of the Spotless Mind. With Kate Winslet, who, quite frankly, would make me hot if she were Gweneth Paltrow, but she's not. The idea in the movie is that they can erase unpleasant memories. Sounds fun. Comes out on DVD Sept 28th, which is good timing.

We talked again about superoxide dismutase. People with familial ALS show problems with their SOD, so he thinks that it might be a good idea to start taking it, if it is biochemically available (not destroyed by the stomach). It's available on the internet and in freak stores, so I plan to get some.

I mentioned to him that when people are telling me very serious things, awful things, even, I sometimes wind up smiling or grinning against my will. That's not what my feelings are, it's just as though my face does something on its own. I said I had read about uncontrollable laughing or crying in people with ALS, and wondered if this were related. He said my situation is not abnormal. He described a hierarchy of inhibition that is layered in vertical levels from the base of the spine up to the brain. I have a form of ALS which mostly resides in the brain and upper nervous system, he said, and the reflex inhibitors for laughter are located at the top of the vertical inhibitor system. Hence the hiccups I've been having more easily and more often. And my inability to control my facial expression. He says there is an awful term for it, but I love it, actually. They call it "emotional incontinence."

He said it can also happen in old age due to brain deterioration leading to disinhibition. Don't worry, it's not like I'm out of control, dancing around like Twyla Tharpe, weeping and laughing by turns. Hardly. Most of the time, I'm the same old poker-face.

"Disinhibition" is an interesting alibi. Hmmm...

Then we talked about how weird ALS is, that it effects only motor neurons and is globally sporadic. I asked him if there were any databases of ALS studies that I could access, just to assure myself that certain avenues of research had already been explored. He named a local medical school and said they have an excellent library, plus a great database. I'll see if I can get access to that, maybe even online.

He mentioned that the motor neurons are the longest and hardest-working structures in the body, and mentioned how much the nervous system consumes in blood and nutrients (the wee little two-pound brain just by itself takes 20% of our blood and glucose). He said that those nerves, particularly the motor nerves, have to engage in tremendous metabolic throughput. And so perhaps tiny amounts of trace toxins can be damaging. Regarding the case of extreme athletes, who, it is conjectured may have a tendency towards ALS (no studies have proven this), he said that perhaps they put so much water through their system in the course of their exertions that they filter and trap higher quantities of trace toxins. I don't want to bust this theory too badly, but you'd think it would show up, historically, in a class stratified way. The laboring classes would get it, and the idle classes would not.

Since we were talking about the relative length of the motor neurons being a possible factor, I said I wondered if giraffes get ALS. The doc looked at me with mild surmise and said he'd never thought of animal ALS incidence. (Obviously, we do have mice models, but he means other large animals.) He said it was a very good idea, and worth looking into.

Next stop, that research database.

By the way, today I noted (formally) that my left leg bows inward at the knee much more dramatically than my right leg when I squat on it, for example when compressing the ankle joint as a stretch. They've always had this tendency, since I was born pigeon-toed and had to be straightened with plaster casts and braces. This greater bowing of the left leg has been going on for a while, I just had never formally noticed it in comparison to the right.

Saturday, September 11, 2004

Garden State

The boy threw up again at 9:35 PM last night, but since then has been able to hold down liquids and a specified amounts of prescribed solids. He was energetic and seemed on the mend. The lovely wife went to a race with toddler girl while I stayed with the boy. The toddler girl watched the race with the lovely wife's dear friend, while the lovely wife ran the race. Then after lunch the miraculous college student arrived and watched both kids while my lovely wife and I went to a movie. We selected randomly with an important rejection subroutine (ignore movies that look like they are about deamons, sharks, people shooting people, or video games), which left only one choice: Garden State. The ending of which I now intend to give away.

Based on the online overview, I would never choose to see this movie. But it turned out to be good, for a piece of fluff. (A piece of fluff, in my view, is any movie about people's life choices and feelings. Or about young people.) So on the one hand it was a light comedy about young people's quests, but on the other hand it was about the value of life. The movie starts with a plane crash, and at one notable point some character says more or less that life may hurt sometimes, but it's all we have, implying that we might as well appreciate it.

This is something I knew long before I was diagnosed with ALS. But I do have to say that it adds a certain bouquet to seeing movies about people confronting death and loss and battling their way towards inspiration, when you yourself have been diagnosed with a fatal, incurable disease.

Not that it made me sniffly or anything. When the boy and the girl both wound up in the neurologist's office, and he had his MRI, I was kinda hoping one of them would wind up with a glioma. Glioma is something serious and tragic that I have never had to face, and am glad I don't, so I shouldn't joke about it. But people in movies don't get ALS. So I set my sights on something more likely.

No, the scene that had me sniffly was where the boy (now 26) talks to his dad. Because I was thinking how my own son, when grown, is going to be smart, forceful, forthright, and no one you can talk around or talk down. I was picturing my son laying down the law to me, and thinking that, even if I were arguing with him, my main reaction would be how impressed by him I was and how much I loved him.

There was another quote in the movie about making families, and that made me want to get home and see my son and my amazing daughter.

The movie had set up the plane-crash ending, and I must say that it would have been a better film and more true to the message if they had let the plane crash. Instead, he gets off the plane and we have a happy ending as he goes back to the girl.
Hex of the camcorder

I was playing chess against my son, and, although I was whuppin' him bad, he made a brilliant move (for a four-year-old) where he checked my king and captured the unprotected bishop after the king retreated. I didn't give him any hints, he came up with that by himself. Then he wanted to play against the computer built into the chess board, so he did that, handling the coordinates system flawlessly. During this, he started talking about the possibility of having a system of needles and holes in the board, so that the computer could move its own pieces and wouldn't have to use the coordinates system. Like all parents, I started thinking that my child was genius, so I ran for the camcorder.

As soon as I turned it on he moved his bishop next to the computer's pawn line and gave that away, then gave away his knight to another pawn. This is on tape, not the brilliant capture of my bishop, not the needles and holes speech. The hex of the camcorder!

Friday, September 10, 2004

"Dad, I feel like I'm gonna throw up..."

He didn't eat any snack, said his tummy hurt. He seemed sniffly and tired during the chess game he asked for. (He's getting better at chess, by the way; I'd say he's almost on the verge of being a player). He didn't eat lunch, just sipped some ginger ale.

I took him upstairs for his nap, and made his bed, which I had unmade that morning, when he woke up wet. After I made his bed, he hopped in, and I looked for the Pooh stories under the bed. He hopped out again almost immediately and stood in the middle of the carpeted room.

"Dad, I feel like I'm gonna throw up..."

Instantly I acted, hoping to get him to the bathroom. "Let's get you--"

Out came the vomit. Brown liquid. Onto the carpet. A puddle as big as a dinner plate.

Instantly I acted, the caring, soothing dad: "Poor boy," I said, moving slowly and gently, "We're going to help you feel better."

I thought that, as a precaution, it might be good to get him into the bathroom anyway. Just in case.

"Maybe we should--"

Out came the next wave of vomit. Bigger than the first. The puddle on the carpet was now as big as a dinner plate and a salad plate.

Instantly I acted, "Get in the bathroom!" I shouted, grabbing him by his arm and pulling him along. The Quick Reaction Force downstairs (his mom), left the detainee (the baby girl) strapped in to her chair with lunch in front of her, and rolled out instantly to engage in our support.

The QRF arrived just in time to see the boy blow big, chunky brown things into the bathtub. I sure was glad that hadn't gotten on the carpet. The QRF comforted the boy while I snapped out: "I'd better clean that mess up, pronto," and went downstairs to grab some rags and a spray bottle of cleaning fluid.

I peeked at the detainee, and saw that she seemed happy to eat lunch for the time being.

Upstairs the QRF ministered to the boy while I sprayed the carpet and used lots of mechanical energy to scrub up the mess. I tossed the used rags one by one into a bucket. Thankfully, the vomit did not stink, so far as I noticed. There is something to be said for having distressed sinuses. I used the last several towels to get the carpet dry, scrubbing so hard that I felt the heat from the friction.

I tried to clean up the bathrub but decided to finish that part of the job later. Those chunks sure looked like Boston baked beans. But we'd had those a full two night ago. Made no sense. "Son, Did you eat any beans today?"


"Maybe when we weren't looking?"

"No, Dad."


I went downstairs and tossed the rags in the laundry machine, setting it on Tough Scrub, a 51-minute cycle.

According to the QRF: "The things he threw up were raisins. They discolor, and bloat, so they look like beans."

"You did a good job," she said, "An awful lot of work."

Thanks, Honey. I love you too.

Thursday, September 09, 2004


I went to the local chiropractor today. The previous one was supurb, really superb. But the drive is about an hour, one way. So I had to try to go local. The remote chiropractor is the kind of woman that Robert Heinlein would have in his early, good novels, not his later, crappy ones. (Watershed: Stranger in a Strange Land). She is strong, fearless, super-athletic, martial-arts trained, gutsy. She's the kind of woman that can join a fire department. And has been asked. Here in the States, the men and women have to pass the exact same physical test to get hired by a fire department. And it's hard. And she could do it.

So the local chiropractor immediately noticed a small amount of curvature in my spine, towards the right. This would make sense since the muscles on the left side of my body are weaker. The remote chiropractor (the superwoman), had also mentioned this, in my most recent visit to her on July 15, she for the first time said she noticed a very slight curvature to the right, so minor that it could be within the normal range.

The local chiro today just mentioned it flat out, without going to lengths to describe it as tiny and barely noticeable. But she also didn't seem to think it was a huge deal. So maybe things are slipping out of alignment there. We Shall See.

But the good news is that I told her I thought that the person who took my blood pressure that time might have got it wrong. So the local chiro measured it carefully, and it was 110/70, within normal.

I paid for a rated account at the intenet chess club ( Now you can all laugh as my rating sinks lower and lower. It starts out at 1400 on ICC, which is wildly inflated when compared to true USCF ratings. However, fortune smiled, and for my first rated game sent me this opponent. I wish they were all as easy:

brainhell (1467) vs. zarih (1063) --- 2004.09.09 17:15:04
Rated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move brainhell zarih
---- ---------------- ----------------
1. e4 (0:03) e5 (0:16)
2. Nf3 (0:02) Nc6 (0:03)
3. Bb5 (0:02) d6 (0:05)
4. d4 (0:12) a6 (0:09)
5. Bxc6+ (0:16) bxc6 (0:03)
6. dxe5 (0:01) d5 (0:19)
7. O-O (0:08) dxe4 (0:07)
8. Qxd8+ (0:02) Kxd8 (0:03)
9. Ng5 (0:03) Be6 (0:13)
10. Nxe6+ (0:02) fxe6 (0:03)
11. Nc3 (0:08) Ne7 (0:17)
12. Nxe4 (0:02) Ng6 (0:04)
13. f4 (0:19) Be7 (0:28)
14. Be3 (0:19) Rf8 (0:09)
15. g3 (0:05) Rb8 (0:05)
16. Nc5 (0:02) Bxc5 (0:20)
17. Bxc5 (0:02) Rf7 (0:06)
18. b3 (0:04) Rb5 (0:21)
19. Be3 (0:37) Rd5 (0:09)
20. Rfd1 (0:11) Rdd7 (0:11)
21. Rxd7+ (0:03) Rxd7 (0:07)
22. Kf2 (0:27) h5 (0:20)
23. h4 (0:09) Rf7 (0:07)
24. Bd4 (0:02) Kc8 (0:27)
25. Rd1 (0:07) Rd7 (0:18)
26. Ke2 (0:03) Kb7 (0:19)
27. a4 (0:07) Rd5 (0:09)
28. Bf2 (0:54) Ne7 (0:42)
29. c4 (0:04) Rxd1 (0:19)
30. Kxd1 (0:02) Nf5 (0:04)
31. Kd2 (0:09) a5 (0:16)
32. Kc3 (0:08) Ka6 (0:16)
33. b4 (0:03) g6 (0:37)
34. b5+ (0:07) cxb5 (0:09)
35. cxb5+ (0:01) Kb7 (0:09)
36. Kc4 (0:02) Ne7 (0:24)
37. Be1 (0:32) Kb6 (0:13)
38. Bf2+ (0:14) Kb7 (0:05)
39. Kc5 (0:05) Nd5 (0:09)
40. Be1 (0:47) Nb6 (0:22)
41. Bxa5 (0:03) Nxa4+ (0:02)
42. Kc4 (1:11) Nb6+ (0:35)
43. Bxb6 (0:11) Kxb6 (0:19)
44. Kb4 (0:02) Kb7 (0:23)
45. Kc5 (0:01) Kc8 (0:09)
46. Kc6 (0:21) Kd8 (0:09)
47. Kc5 (0:32) Kc8 (0:15)
48. b6 (0:08) cxb6+ (0:10)
49. Kxb6 (0:02) Kd7 (0:01)
50. Kc5 (0:02) Ke7 (0:03)
51. Kc6 (0:12) Ke8 (0:21)
52. Kd6 (0:02) Kf7 (0:02)
53. Kd7 (0:02)
{Black forfeits on time} 1-0

Wednesday, September 08, 2004

Kick yourself

I can still kick myself in the right butt, however, the punch has gone out of it. I remember when I went to see the neurologist in late December, that I demonstrated to him how I could kick myself in the butt, and I used my right heel to do it. The kick was rapid, sharp, firm, and there was plenty of heel in it, including an ankle-bend for emphasis.

Well, now I can still make the heel hit the glute, but the punch has gone out of it, and the ankle doesn't bend and dig in the way it should.

And the left leg seems even more feeble at this task than it did back in December.

You might think this has me worried. Well, oddly enough, I don't worry. I feel blessed.

Monday, September 06, 2004


I'm a homebody. I admit it. That means I take comfort and relief from being at home. Which is not to say I don't like to travel. I had a good time in Europe, and in Russia. I've enjoyed back-packing. Driving. But I don't actually feel refreshed and inspired until I've had relaxed free time with no pressures, which is what I get at home.

The left ankle actually has less of a range of motion that I thought. Quite apart from what the muscles on that leg can do, I have a problem forcing the ankle to bend, even when I squat on it with great force or bend it with my hands. There is a strap thingy, a sort of brace device, which they showed me a few months ago that you can use to bend your ankles against their will. I've sent an email to the physical therapist. The auto-reply sayss that she's out until Sept. 20. I'll contact her then. It's not something I would wear when walking, just a therapy to increase my flexibility.

I really enjoy playing with my son when we have no agenda. No schedule or tasks. Because then there is nothing for him to fight about. This morning was like that, while my lovely wife takes the girl in the jogger stroller, for a run with a friend.

My son and I were playing cards on the back patio when I discovered that for all practical purposes, I cannot shuffle. That flex of the forefinger and thumb is something I cannot do in a coordinated way with my left hand. The right hand can do it. I did manage it with the left hand once, but the cards flopped out awkwardly. So now I shuffle just like a kid: Make a mess of the cards and push them around.

Someone once wrote that the in-progress chess games pictured on chess set covers often portray unrealistic configurations of pieces, indicating that someone who does not play chess just moved some pieces around and took a picture. The picture on my son's chess set is no exception. For example, the black queen is under threat from the white knight at the same moment that the white bishop has the undefended black bishop pinned on the king. This is highly unlikely. Since the black player would never allow the queen threat to go unanswered (and there are no checks or mate threats to justify it), the most recent move has to have been by white, to set up the treat to the queen. But this makes no sense, since the threat is weak and easily escaped, by the queen moving up to defend her knight. And speaking of that knight, any sane white player would have taken the knight with the bishop and checked the black king, rather than bringing in the weak knight threat on the queen, granting black the chance to defend.

RIGHT LEG ALERT: Ya know, for months now it's been the calf on the right leg that feels crampy. That's odd, because my left leg is the one most impaired. You might say: 'Easy, you've been relying on your right leg more and hence it is strained." Well, I think that's not really it. See, the left leg is the one I have come to think of as steady and realiable. OK, granted, I cannot balance one-legged on it reliably. But at least it doesn't have cramps. Case inm point: we 'hiked' (if you can call it that) down and later back up a very short but fairly steep dirt path less than 70 yard long. The right calf was sending signals, but I was able to plant and use the left leg as though it was my steady mule. Mysterious mystery. Who gives a crepe?

I know one thing though: Sleep is a wonderful time, because I have no responsibilities and no decisions. I know another thing: Wonderful as she is, my daughter wakes up too early. Or I go to sleep too late.

Saturday, September 04, 2004

10 years

I went to see the cool local neurologist and he is always a pleasure to hang out with. He checked me out and saw no change since when he first saw me at the end of 2003, though I did inform him that my left hand has progressed noticably but not alarmingly. Their tests and observations are necessarily gross and cannot pick up subtleties. That's OK.

He said that neck strength (which he measures by having you push your forehead against his hand), is a critical indicator of breathing strength. For his purposes they can be thought of as the same thing. As with my other major muscles, my neck strength is quite good right now.

I told him that I knew that the question was unfair, but I wanted hiim to guess, given my current rate of progress, how long I would still be walking, and how long I would still be a live.

"Ten years," he said.

"Ten years still walking or ten years still not dead?"


"And who knows what can happen in 10 years, right?"


We both know this is an impossible thing to responsibily predict, but I appreciate his taking a swing at it. And I don't think he was just trying to give me hope. My goal had been to still be walking five years from now and still alive 10 years from now. I'm not going to raise my goal based on what he said. Maybe when I reach it I can readjust it.

Which brings us again to the topic of the guilt I might feel for progressing so slowly when many other people with ALS face the sudden and rapid decline of their bodies, some of them as rapidly as within one year. Most people die within five years of diagnosis. It's a small percentage who get to 10 years.

But I have to remind myself, other people who have ALS would not want me to feel guilty. They want to live, and they want me to live too.

Friday, September 03, 2004


The soma did indeed turn the corner on the bronchitis, and I went all day testerday without that internal sunburn feeling, and the cough was much more tame. I slept well last night, in the bed and not on the couch. The miraculous feeling is the seeping rise of a sense of health, or perhaps it's just the absence of ache. It still makes me cough if I talk, but I can tell that things are on the mend. Yay!

My left arm seems thinner to me no then it did before this illness. I blame the bug. You might dismiss that, but it is what I believe and it's based on my experience. Not that I can prove it.

I was so messed up the past few days that I didn't have the energy to put the weekly five gallons of rubble in the garbage. Pickup was today. I just feel grateful to be getting better. Now I can think about doing actual chores and errands! Yay!


Thursday, September 02, 2004


Maybe I turned the corner? There was less coughing last night, and less this morning, and I feel a little better but maybe that's just a morning thing. I have to make my best effort to be completely lazy today, and hope the soma repairs. Yesterday evening was bad, and I got that feeling in my chest and throat, which I can best be described as an internal sunburn, or heartburn. Once when I had that and mentioned it to a doctor or nurse, I was told that's what bronchitis feels like. So I guess that I have bronchitis.

I have been spending a lot of time lying on the floor, and my wife has been doing all the kid work, and making breakfast too. I thank her.

One frustrating thing is that we had planned that I would start getting the baby girl to bed on alternating nights, now that he is weaned. But everything in on hold while I am sick. My wife took over and got the boy to bed last night even though it was my turn. Good thing too, because nose faucet.

The other frustrating thing is that I perceive that when I am sick, ALS makes its advances, and my muscles and nerves degrade. I know this is not good positive imagery but I can't help it. My left leg looks thinner to me. I hate it.

I'm not a crip yet, but someone said that the secret to handling yourself well as a crip is not to depress people with your complaints but rather to have a sense of humor. I'm not living up to that in my recent posts. Sue me!

The lemon drops irritated my throat, and the other fruit candies my sweet wife got me do the same. I think I need butterscotch or taffy or something creamy and buttery rather than zingy and zesty.

I really wanted to have a punchline for you here, leave 'em laughing. But instead I'll point you to one of my favorite blogs, Ginmar. She's a soldier whose been in Iraq for quite a while, was involved in one heck of a hairy firefight over there, comes back to the States on leave, and finds out her roomate is as bad as Saddam Hussein, that one of her best friends is MIA (her cat), and that the neighborhood she lives in is as bad a Fallujah. This is my interprtation, not hers. However I was amused at her description of a four-year-old who she thinks is out of control:

When you tell not to do something----like, say, open the door and let the cat out?----he smirks right up at you, then puts his hand on the door lock. If you tell him again, he pouts and looks down as if to ignore you, all the while fiddling with the door latch. When I took the brat's hand off the door, he slapped me and shouted "NO!" at me, gave me what can only be a shit-eating grin before shoving the door open and holding it open. This kid already knows that he won't face consequences for disobediance. I found myself just fascinated by his demeanor, because kids of that age are so guileless compared to adults. You can see everything they're thinking. In this case, what the brat was thinking was, "I'll never get a spanking! I'll never get a spanking!" This is because she seldom does spank the kid or whatever. He just does whatever he wants, she doesn't pay attention to him, and what definitely gets him attention is being a brat. But he knows what he's doing is wrong, so he's already linking doing bad things with being somehow cute. And he's so young!

I'm sorry, but my kid does something like this at least once a day, or once every 10 seconds when he's on a roll. Mostly I am impressed by how well-behaved he his. I think this is just normal preschooler behavior. We don't spank him. So are we creating a monster?

I think that the kid in Ginmar's case has picked up on the tension between her and his mom. His mom sounds not very mature, and so I wouldn't be surprised if in some subtle or overt way she has encouraged him to mess with Ginmar. Or maybe he truly is a devil child. But I don't think this example proves that.

Delightful concoction (and so easy to make!):

1. Prepare some angel hair or vermicelli
2. Lay it on top of a small amount of finely-chopped, fresh uncooked spinach
3. Mix in some mild and fresh salsa (from the deli counter, not bottled salsa)
4. Grate cheese on top.
4. Eat, while praising brainhell.


Wednesday, September 01, 2004


I took double doses of Robitussin one two occassions yesterday and it didn't suppress the cough at all. Yet it does make me feel jumpy and poisoned. So I'm not taking that stuff anymore. I guess the scientific study was right.

Coughing kept me awake past 1 AM last night, and the baby woke at 6. I felt better when I woke up, but then I started coughing. I slept on the couch so as not to keep my sweet wife awake.

For a couple of weeks it was just a cough that I thought was receding. But it's more severe now. I am also getting a sniffly cold, one that had afflicted my wife. The coughing wears me down. It makes me hot. From the coughing I get a muscle cramp right between my abdomen and upper thigh, near the hip point, not the groin.

I hope the antibiotics can do something, but so far they have not. Second dose was this morning. Antibiotics not only kill bad bugs but good ones too. That's why, when I take 'em, I always take a dose of prune juice too. Because, as the Bible says, constipation is worse than diarrhea.

The scenario is that, for health reasons (his heart), Cheney will bow out and McCain will take his place. Keep your eyes peeled for that.

I bought this computerized chess board (a chess set with a chip inside it, and a keypad interface) for $10, used, at a local toy shop. I also bought some glass chess pieces to go with it, for $5. Such a deal! Anyway, the thing says it's for beginning to amateur players. Level one doesn't seem to work at all. Level 7 works but has a blind spot where you can mate it in four moves. Level 63 and 64 take a long time to process, but don't seem much better in quality. Basically you just have to keep the pressure on until late mid-game and then you'll see an opportunity to exploit.

This would be a great gift for my son in a year or two. How I think I will handle it is this: Show it to him now, let him watch me play it, and then some day soon, let him play a game against it, with this understanding that this is a special, non-precedent-setting event. With kids, it's important to set expectations and boundaries. If you don't have kids, you may not understand why.

A sweet story and yet a sad one: There is a little girl at my son's preschool who also knows how to play chess. She has the most cheerful face. We had a $3 plastic chess set that I bought at the supermarket, so we gave it to the preschool. My son played the little girl yesterday, on his first day back in school after a two-week break. I thought it was wonderful that he would have someone to play chess with. Guess what? My wife tells me that little girl is transferring to another school in two weeks! Sad. All that will be left are a bunch of kids younger than my son. Maybe I should give a short, very simple presentation on chess, just like I did on the Mars rovers. Because otherwise I doubt if any of these kids will have an interest.

Most of them are boys. Their culture is mostly based around Batman, Spiderman, and Superman. That's OK, and I fondly remember hiking a mile and a half downhill to the local store to buy a candy bar and a Marvel comic book (Daredevil, Spiderman, Fantastic Four ... leave that DC Comics crap like Superman and Batman on the shelf!). But I did that when I was 10. No one introduced me to superheros when I was four. And I don't think it's suitable.

But it dovetails nicely into the TV culture, the electronic babysitter. I hope I don't sound bitter. I'm not. It's just something I don't want for my kids.

Anyway, an iconic moment in these culture wars occurred at the birthday party we went to Sunday. My son and a couple of other boys werw looking at the various gift wrappings, and one kid (probably my son), said "That's Buzz Lightyear!" And then this other kid, in a tone of shocked righteousness, said "That's not Buzz Lightyear! That's Jimmy Neutron!" Imagine your tone of voice responding to someone complaining about how when President Carter was in office in 1999, he handled the Kosovo situation poorly. So the conversation among the kids moved on to when the cake would be served. But "That's not Buzz Lightyear! That's Jimmy Neutron!" repeated the boy in the know.

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