Wednesday, March 31, 2004

Weeks and months

I don't know if I have already written this, but the most chilling phrase I have ever read about ALS was on a page from a medical textbook my local neurologist photocopied for me. The phrase was small and simple: "As the weeks and months pass..." It sends horror through me. If I notice a progression of symptoms on the scale of weeks and months, then I may not have long to live. If, on the other hand, I can go a year with no significant progression, then the doctors who painted the rosy scenario in So, You're Going To Die! may be right.

In Hawaii I noticed what I think is an increased stiffness in my left hand. But I am not sure. Maybe it was like that already. As the weeks and months pass, we shall see.

We're back. Got back late on the 29th. Recovering well. Humuhumu nukunuku apa a'a!

More later.

Saturday, March 13, 2004


So I was at Ross fine clothing store with my son, picking up a few socks. The checkout line took me past the rack of haphazardly displayed musical selections, which I regarded with preparatory contempt. Then: "Hey, Credence Clearwater Revival!" I looked at the song list. Looking Out My Back Door was on there. I knew my son would love it. And the CD was only $3.99! On the way home I sang the verses I remembered, and told my son that the CD would be even better. He was happy. When we got home I slapped in the CD and advanced to the song. Hmm, must have gone to far. Go back. Nope. That's too early. OK, listen, don't push buttons, you haven't heard this song in a while. Wow, the instrumentation is different. Maybe this is the live version. I bet I bought some compilation of live performances instead of the studio version. Oh well. Hey! That voice -- that's not the right voice! What is wrong with this, let's look at the label. Oh, in small type it says "Studio 99 performs" and then in huge type it says CREDENCE CLEARWATER REVIVAL. No wonder it was $3.99. What a dupe I am!

So then I called the store about their return policy, and they said I could return items for cash. I was all set to do that, to deny the music distributor scum their $2 of sucker revenue, when I thought: But the store will say that they don't accept returns of CDs when the shrink wrap has been removed. The idea being ... being ... that I actually wanted to copy this CD.

I shuddered between the two poles: Allowing the music distributor scum have their $2, and letting anyone think that the CD was worth copying.

Then the mail carrier arrived and I got some junk mail with a postage-paid return envelope. I usually return these with the promotional material, and torn-up outer envelope, inside. It's a easy way to get rid of things. Sometimes I include junk from other mailings in the return envelope, or mix them up between the two mailings. This time I cut the CD in half, saved the jewel case, and mailed the CD, plus liner art, to the firm seeking my business.
Singapore by land

Feeling a wee tiny bit anxious today because I think (or imagine I think) I notice an increased torpor in my left hand. Hard to say. As I must have said much earlier in this blog, you can build up your muscles as much as possible, but if the motor nerve cells controlling them die, the muscles stop working and evaporate. As the great poet John Dolan wrote, "Singapore by land." For those of you who are not steeped in the history of World War Two, just picture a guy slipping on a banana peel and then a piano lands on him.

We are leaving for Hawaii early tomorrow morning, so you may anticipate a decrease in blogging frequency, or total blogging blackout, during this period. We'll be back on the 29th. A lady I exchanged emails with, who has ALS, wrote to me that she traveled to various places in Europe after she was diagnosed, and she is glad she did, because she can no longer travel.

I bet if she rented a charter plane and brought 24-hour attendants, she could. Some people are just tight with money. I mean, how do you think the President does it?

Obviously, the doctrine of "Not Today, Baby!" will need to be flexible. Like the US Constitution. The interpretation changes. If I develop more symptoms, it may come to mean, "Are you bothered yet?" "Not today, baby!" Or it may come to mean "Are you dead yet?" "Not today, baby!"

Happy second month diagnosis anniversary! Not today, baby!

Friday, March 12, 2004

Bad poetry

A friend sent me an email suggesting that I should collect my poems. Last night, while feeling down (the best state for poetry appreciation), I went through the roughly 150 I had on my hard drive. I liked about 130 of them and pasted them all into one big file. I am thinking of doing a "publish on demand" book where copies are only printed (and sent to) people who order them online. So it is halfway like vanity publishing. And halfway not. My friend responded that the idea was a good one, and said some more very encouraging things about my poetry. I thank her for inspiring me. I replied in this harsh and loving way:

First of all, I think you deeply for your sincere praise.

As for sharing my poems with your friends and family, the very important qualifier in your email is "...who enjoy poetry." See, for the vast majority of people, showing them your poems is unwelcome. Most people, and Americans in particular, don't like poetry, don't want anything to do with it, and don't even spend time avoiding it. Any more than you spend time thinking: "I'd rather not drink sewage."

Handing them your poems is an imposition. You have inflicted something on them. You've made them uncomfortable. It is, in fact, in my judgment, rude. This is why I recoiled in horror at the idea of you spreading my poems among your friends and family. I acknowledge that you have included the qualifier, "...who enjoy poetry." But I think that even most of those people don't really enjoy poetry.

I have had poetry published in various non-famous places over the years. All the way from the XXXXXXXX Poetry Review in the 1980s to XXXXXXXXX in the 1990s.

I have not focused on self-publishing, I have never self-published in any significant way. I did include one (1) of my own poems in my zine when it was alive. But my policy was to refrain from publishing my own stuff. Most people assumed that my zine would be full of my stuff. But what would be the point of that?

I remember one guy, a boy really, inadequately filling a grown man's life, who sniffed at the zine, asked about the writers, asked about whether you could subscribe, and then said "This is vanity publishing." He was paying me $750 to write advertising copy, so I let that comment pass. But the writers always got free copies of the zine and did not have to pay a thing. So, not vanity publishing.

But in America there are two things most people want to know, when they find out you have been published: (1) Does it make you famous? (2) Are you making money from it, and how much? What these two question boil down to are: Does this make you better than me, or can I view your 'art' as the antics of a pathetic loser? They think it has to be a Hollywood blockbuster or it ain't jack. These people almost never ask to see the piece that was published. And they often ask you to tell them what it was 'about.' But if you could tell someone what a poem was about, you wouldn't have to write it.

Very, very few people care about the poem for what is in it, because very, very few people have the receptors. Especially few Americans. I love Americans. But I know that they don't like poetry.

I sound very bitter don't I? Actually, no. This long rant was just to help explain the basis for my policy of not trying to promote my poetry, and certainly not to friends. Except those few who I already know are poets themselves. This is not a poetic country, and these are not poetic times, and I have adjusted to that and accepted it.

The reason I responded to your idea that I should make a collection of my poems was that I might being dying, and I wanted my poems to at least be available to some rare, few, people (maybe my kids), who might want to flip through them. Also, the suggestion made me curious to review my own stuff, which has been sitting in the computer for years and years now. I was pleased by what I saw. But I am the writer. So what would I know?

As far as "a major publishing house" goes, well, first I would like to star in a movie underneath Uma Thurman. Not to make fun of you, but poetry is not a money-maker, and very little poetry is published annually, and that goes to famous, well-connected people. So thanks for the encouragement, but, I won't be joining the slop pile.

Well, I just subjected you to a long and probably bitter-sounding rant. What I want to emphasize, and leave you with, is that I really, REALLY appreciate that you said such nice things about my poetry, and I am honored that you think so well of it.
Mars again

I must tell you (secretly) that I am hoping that one of the rovers will encounter signs of life on Mars. Maybe a fossil in a rock. But more likely, I think, some kind of film or web across the ground that was left there to die when the water went away. Like maybe the long dark patch in the left side of this photo of the crater Bonneville. Or maybe something that pooled inside the small (6 foot?) crater within the Bonneville crater. Wouldn't that be nice?

I would be rocked by the news. I really don't think that the average person would spend more than two seconds thinking about it. Our movies have led us to expect an actual alien, speaking English, at the White House. Anything less is just academic.

In the interests of full disclosure I hereby reveal that yesterday afternoon, and this morning, my mood was down. Or fragile. Or what have ye. I think it was triggered by the Tai Chi class I went to (my first ever). It’s limited Tai Chi aimed (judging by the participants) mostly for older folks. I was the youngest participant there. I noticed some difficulty I have balancing from my left side, and lifting my left foot. What I have to remember is the lesson of the meltdown I had after weight lifting for the first time. How weak! Sob! Blah blah blah! So, in Tai Chi I have discovered new aspects of my limitations. I think that in a short period of time I will, as usual, come to see this as a new challenge, something to push back, a new angle on the game.

I suppose another factor was the stumbling around I did yesterday. When I do that, it makes me think: Progression!! Am I getting more impaired!? Is it moving quickly!? But I have to remember that I always stumble around after a workout.

Tomorrow will be the two-month anniversary of my diagnosis, and I really, really don’t want to be reporting the creepage of feebocity by the third month. Oh no. So the possibility that the foot or hand problems are getting worse also got me down yesterday afternoon.

I developed a new form of Tai Chi yesterday: Pick the biggest room in your house. Lie down. Maintain that posture until they go away to college.

Also, I suppose that I may by this point have already maxed out all the early gains I could expect from my strength building routine. There was a lot of weakness that I overcame quickly. So the low-hanging fruit has been picked now, and future gains will be less dramatic, I think. I was taking too much satisfaction from the strength gains. Attachment is the root of all suffering.

The name of my first computer (an 8-Mhz Mac Plus) was my own first name. The name of my second computer (a 60-Mhz Mac) was ‘Spiderland.’ The name of my 300-Mhz Mac G3 is ‘Europa.’ I have named my hot new dual-1.8-Ghz Mac G5 ‘Adonais.’ The idea is to change the name space each time. I never would have chosen Adonais in a million years under normal circumstances. I chose Adonais as the name because I have ALS. The name evokes narcissism, a focus on one individual, and it evokes the fact that many people care about me and don’t want me to die:

I weep for Adonais - he is dead!
O, weep for Adonais! though our tears
Thaw not the frost which binds so dear a head!

I am working on a video for the kids to watch if I die. It is geared to the kid level. Something that can comfort them. I read them a story, for example. I might also make one geared towards them as adults. I have met one or two people in my life who explained that they never knew their dad. I remember one guy sadly saying, “He died when I was four, so I don’t remember anything about him.”

I have memories from when I was a baby, too young to crawl. So I remember my dad yelling at my mom and making me afraid and start crying. I reached up my arms to her so that she would protect me. This happened several times in a short period. Maybe it was every day for a week. Maybe just three days. You may not think there is much going on in babies’ heads, but I remember thinking (without words of course): Oh, no ... he’s doing it again! For the rest of my childhood he was a vindictive, hysterical, paranoid, cruel, tortuous jerk. And no, I don’t just mean that he was firm, or that he cared too much. He was an out-of-control bundle of self-pity, something less than a man who took out his inner turmoil by punishing his wife and kids. He never hit us, he preferred to use words, and yelling, and a knowledge of the places where the human heart and spirit can most easily be harmed.

And I am not that sort of dad. And I am not that sort of person. Like some law of subatomic billiards, there is the particle that spins in the same way, and there is the particle that spins in the other way. I spun the other way. Chance. My good fortune.

I need to get some sandals for Hawaii. I will package all my pills in two separate bags for each day. That's, um, 28 bags. I worry that the people at the airport will think they are contraband. So maybe I will make a manifest, saying what each pill is. Not sure. Most terrorists try to appear guileless, so this could backfire.

I have been taking the evening riluzole on an empty stomach for a week now. As of this morning (today), I will take the morning one on an empty stomach too. In one minute, in fact.

Thursday, March 11, 2004


I am trying to decide whether to bring my clunky old laptop so that I can continue blogging from Hawaii. Last night I thought I would, but at this moment (with an open-face avocado sandwich in my gut), I think not. Ronolulu has a computer, but it is a laptop which he usually takes with him to work. So my blogging may be sparse or nonexistent. I sense some of you need a break, anyway. But I will take the camera and acquire photographic images. And you can expect an account when I get back. We plan to be gone March 14 (Sunday) until March 29.
Battle against Time

I remember a lot of things about being a little kid and a baby, farther back than most people think you should be able to remember. And one of the things I remember was that at a certain point my parents kept trying to insist that things had to be done on time, and that we might run out of time, and that if you did one thing when you were supposed to be doing another, you would miss the chance to do the other thing. I didn't think it should be like that. I knew that they were all-powerful and could make anything happen, so I kept ignoring the time issue, thinking or hoping that they would finally get tired, and do their usual magic, and take care of it. Then I would get to color as long as I wanted, and go back to the petting zoo which was now closed.
That was just a dream

I had one of those dreams where, after you wake up, it still seems true. In the dream these very nice people had me over for dinner several times, and in the course of conversation I said something that made me look like a fool. After I woke up I thought, firstly, that I owed those people a dinner, and that I could suggest it, but that I was not sure they would actually want to have dinner with a fool. You can imagine my relief when I realized that it had only been a dream. There were no such people, I had never been to dinner with them, and I said no such thing: That Was Just A Dream! I stretched, and all the parts seemed to be moving: Not Today, Baby!

Wednesday, March 10, 2004

Airplane Poem

I wrote this in St. Petersburg, Russia on January 10, 1998:

Airplane Poem

Be happy.

Know love.

Be brave.

If you are sitting in an exit row
and you cannot understand this
poem or cannot see well enough
to follow these instructions,
please tell a crew member.


Tuesday, March 09, 2004

Pneumococcal vaccine

Pneumonia is the most common fatal respiratory complication in ALS (Mitsumo and Munsat, 2nd edition, pp. 182). Immunization with pneumococcal vaccine is one preventative step.

So after talking with my local neurologist, I went to the GP today and the nurse vaccinated me. The nurse practitioner said the vaccine is given twice in a lifetime, separated by at least six years, and confers lifetime immunity. "That's the story now," she added.

Again, my kind of person. Willing to acknowlege that things change. She seemed admirable and comfortable. She said good things about my local neurologist. And she worked for a while with the people at the ALS clinic.

There are not supposed to be any complications with the vaccine. The usual: maybe a sore spot on your arm where the needle went in.

My blood pressure was 140/78. The 78 seems low, lower than it's ever been for me. Not that I'd been getting checked much before the brain rot. The nurse assistant who took my pressure said that her records showed that on Jan. 13 it had been 126/90. (That was right before I went to my local neurologist, who gave me the news about ALS).

I have tended to keep my computers for at least six years. So I made a reminder in the calendar software that came with the awesome new computer my wife got me. See you again, for another vaccination, when I'm 46. I'll jog there.

I did 15 push-ups last night, a record. I have been feeling a bit sleepy-tired for a couple of days, but the baby still is not sleeping normally (though she is improving), and the weather is warmer and I had a good, intense workout. So I don’t blame ALS. Yet.

Let it not be said that Brainhell cannot play chess. The move list below shows a game in which I played black, a few minutes ago. I am not a good chess player. But my opponent had the worse game today, and I won:

guest3011 vs. guest1324 --- 2004.03.09 13:45:25
Unrated Blitz match, initial time: 2 minutes, increment: 12 seconds
Move guest3011 guest1324
---- ---------------- ----------------
1. d4 (0:02) d5 (0:04)
2. c4 (0:01) Nf6 (0:06)
3. Nf3 (0:07) Nc6 (0:11)
4. Bf4 (0:03) dxc4 (0:18)
5. e3 (0:03) e5 (0:06)
6. Nxe5 (0:20) Nxe5 (0:03)
7. Bxe5 (0:02) Bd6 (0:05)
8. Bxf6 (0:09) Bb4+ (0:02)
9. Nc3 (0:03) Qxf6 (0:13)
10. Bxc4 (0:08) O-O (0:03)
11. a3 (0:05) Bd6 (0:14)
12. Ne4 (0:06) Qe7 (0:14)
13. O-O (0:11) Bxh2+ (0:03)
14. Kh1 (0:08) Qh4 (0:05)
15. g3 (0:04) Bxg3+ (0:07)
16. Kg1 (0:08) Qh2# (0:07)
{White checkmated} 0-1

I actually stumbled into the attack with the black bishop. I did it without thinking, because I was feeling capricious. It was only after I made the move that I saw it was a good one. He should have used the knight to take the bishop, but I guess he was flustered. Or his mom was calling out that it was his nap time.

Speaking of stumbling, yesterday I was sitting here enjoying this fantastic computer my wife got me, which is now the center of my digital lifestyle. And I got up out of my chair and must have tripped on the table leg or something. I went sprawling out of control sideways towards my wife’s desk, to the left. But my trusty left leg and arm reacted just quickly enough so that my neck merely bumped against the side of her desk, instead of slamming into it and perhaps hurting my trachea and cervical vertebrae. Yes, I said cervical, and no, I don’t mean I have a cervix. I think that’s what they call the vertebrae up there in the neck area. Which reminds me of the funny story about when I was telling Thrill that I had a problem with my cortex. “Cortex!?” he said, “I thought only women had those.”

Out of the mouth of babes.

I also have had occasion to rethink the comment I made some time back about the neighbor who said I was “inspirational.” I said at the time that it didn’t make sense, since I am only doing what most people would try to do (continuing to live life). Now, though, I think I get it. I think what she meant was that she was inspired. And that includes seeing someone such as myself do the regular thing. She drew hope and inspiration from seeing life go on. Just like I am inspired to see my daughter walk and my son use complex concepts. They consider it a matter of course. But I am still allowed to love them for it.

By the way, the Amazing Neighbor is actually organizing a large group of people to bring us meals on a weekly basis. Imagine! The key thing is to allow people to opt out and to skip whenever they feel like it. That plan should be to give them a chance to feel good through helping someone, but not impose a burden of guilt or compulsion on them if they don’t feel like it, or can’t, when their turn comes. We can always cook.

By the way, I have deltoid muscles! I mean, ones you can see. I was reaching down to take my socks off before a shower, and in the corner of my eyes I saw this actual muscle running from my shoulder down my back. This is highly unusual for me, as I haven't seen that thing in ten years. But, lo and behold, I have them on both sides. Bigger on the right. And my wife last night complemented me for the good muscle definition in my left shoulder! For those of you who don't see me naked, let me paint the picture: Visualize whole, plucked chicken from the supermarket, standing in front of the mirror and flexing. You got the stringy, light-weight kind of chicken, not the big fat heavy one. So on the deltoid region of this chicken, you notice a thin strip, or stripe, about as thick as a pencil, running down from under the wing toward the waist. Now scale that up to man size, use two Sharpie pens instead of a pencil, and you're looking at me, naked. Please deposit $3 for an additional minute.

Monday, March 08, 2004

Perfect Day

Sunday was a perfect day. Because of people. And even the weather was perfect. The night before, we had gone to a party for our wonderful friend Lobelia. Sunday morning Joe and I talked to our neighbor across the street, and his little boy not yet three. After lunch, our family went out for a walk with the kids in the double stroller, and ran into the mom of a newly-adopted one-year-old baby girl. They were out on the sunny sidewalk. This is important to us, because being a mom isolates the mom. They need friends that they can have "play dates" with, but the kids need to be of similar age. So my wife and the lady three doors away got to meet each other. I made sure that they exchanged phone numbers. And the babies met. My daughter was walking a long, long way on the sidewalk, with me hovering near, as she waved away my offer of a finger. Big girl. Then our friend Honeybee showed up. She's in town because her father had an operation for cancer. We'll learn more about that this week. It was great to see an old friend. While she was here, I got a phone call from another friend who has come over often on an emergency basis to help shore us up when the kids were sick. Her brother is going to help her buy a house. Good. Then, as Honeybee was driving away (under a load of books we had given her), my old pal and neighbor pulled up to the curb, honking his horn. He's the one who taught me how to work on my house. I remember him hobbling around, carrying lumber for me even though his feet hurt at the time. He was taking pain pills then. Bikram Yoga solved that problem for him, and he threw away the pills. Then his wife died, choosing not to go through chemo again. After our baby girl was born I rushed her over to their house, maybe the next day or the day after. She got to hold the baby, said how sweet she was. A week or so later she died. Her husband, my pal, took off wandering around the country. We rarely saw him for a long time. Now he looks just great, healthy, happy with his new girlfriend. She's a Real Western Lady. A lot of my relatives are Real Western Ladies so I don't mean anything but respect by that. She's just exactly the sort of person I feel comfortable around. I am happy for them both.

The nature of contemporary American life is isolation and atomization, even for people who like other people. It is a rare day that involves contact with so many good people. And yesterday was a banner day.

Lizard points out that the Spirit Rover has a blog

Sunday, March 07, 2004


Ever since my workout yesterday (which was in the early afternoon as opposed to the usual late afternoon), I have been feeling drowsy. By which I mean rest-o-tropic, but mentally alert. Not really sleepy in the sense of sleep deprived. The baby is sleeping better now. Not perfectly, but better. I believe that my current state of alert drowsiness is a natural fluctuation that I would have gone through anyway despite ALS.

This morning I took my son to the park to play on the new equipment.

We went to a party last night and saw our elegant and entertaining friend, the ballerina, who I will call Lobelia. She's funny too. We have to figure out a way to get her to move back to this area.

Saturday, March 06, 2004

Complex HTML table


Went to the gym this afternoon and wrote down my lifting results. I wish I could make a complex HTML table with events on the left and dates on the top. The I could fill in the results. But it's too complex to do by hand. For now I guess I will make separate tables for each event. But for now I am too lazy to do even that, so...

Hip abduction (squeeze) - 110 lbs / 15 reps
Hip abduction (separate) - 110 lbs / 15 reps
Leg extension - 70 lbs / 5 reps (...was easy but my left shin had an odd numb pain in it)
Seated leg curl - 70 lbs / 1 reps; 50 lbs / 15 reps
Seated leg press - 150 lbs / 20 reps
Dual-axis chest press - 110 lbs / 8 reps; 90 lbs/ 10 reps
Dual-axis pull down - 110 lbs / 10 reps; 110 lbs / 10 reps
Dual-axis row / rear delt - 90 lbs / 2 reps; 70 lbs / 10 reps; 70 lbs / 10 reps
Dual-axis overhead press - 50 lbs / 11 reps
Arm curl - 50 lbs / 11 reps
Arm extension - 50 lbs / 12 reps
Free weight wrist curl, left: 20 lbs / 17 reps; right: 20 lbs / 40 reps
Standing dual free-weight collarbone lift - 20 lbs / 16 reps each arm
Lying down free weight butterfly - 15 lbs each hand / 10 reps
Not Today, Baby!

For about a week or so, this has been a daily occurrence: I am oozing about my day, and I notice how capable and free I am, then remember that ALS is suppose to freeze me and then kill me. The thought I have then is: Not Today, Baby! I revel in the days when I wake up still able, and I believe it is reasonable to have faith that I can count on that one day to be normal. Keeping in mind, of course, the ever-circling Bus that awaits us all. Actually, I don't think I'll be struck and killed by a bus. I think I'll be struck and killed by an ambulance, carrying Michael Jackson.

Last night for the second night in a row I took the riluzole on an empty stomach. The first time was one hour before dinner. The second time was two hours after. No nausea or other symptoms to report. Good. I'll keep doing this for a while and then move the morning one to an empty stomach.

Friday, March 05, 2004

And you love me

Being a dyin' man and all, and so sexy too, I told my dear wife I wanted an extraordinarily expensive new computer for my birthday. But I told her that she didn't have to get it for me ... if she didn't love me. It's fast, it's powerful, it's expensive, and I'm using it now. It was extraordinarily easy to set up.

Today I took my son to the pediatrician, because his gums hurt, and he was coughing during his nap yesterday, and he has been scratching his rectum, saying it hurts. And he had a rash on his wrists and thighs. The rectal itch is due to something called pinworm, or Enterobius vermicularis. The other symptoms are due to some viral infection he appears to be recovering from.

My wife thanked me for declaring that we should take him to the doctor. I just have this rule, based on experience with him, that once his gums hurt, we need to take him in. Usually they discover something that warrants serious attention, often antibiotics. This time the news was good. All he needed was one dose of a simple pill. Mebendazole. Apparently it paralyzes the worms and they are excreted during the next bowel movement. Oh please, oh please!

These worms were nothing to look at -- they lived up to their names. When the pediatrician spread the cheeks on my little guy and displayed his waste treatment facility (which was, I was relieved to note spotlessly clean), everything looked normal to me. Not that I have seen many. Though I have worked with a few. There was the smallest amount of infintessimal whitish stuff, which I would have figured was just a few skin cells or maybe just whatever goopy stuff the body creates. No, the doctor said, those are the worms.

I failed to get a sample so that my son could look at them under the microscope I got him for his birthday.

We are both really pleased by the performance of the Mars rovers, and the confirmation of the presence of large amounts of past liquid water.

Yesterday I shot some video of myself using the pneumatic hammer to nail up the sheet of plywood I tacked in the other day. I did the two middle rows, the easy ones. Next I'll do the side rows on the edge of the sheet, where I have to nail at an angle.

Thursday, March 04, 2004

Neck and diaphragm

I went to the chiropractor today, who showed me a simple isometric exercise I can do to strengthen my neck. Basically you just hold your hands against the back of your head and push back for six seconds. Same with the front and sides. Duh, who didn't I think of that? Do this once in the morning and once at night. Increase the number of reps as you get stronger.

The ALS book has not (yet) indicated an exercise to strengthen the diaphragm. But the people at the clinic use FVC (forced vital capacity) -- your ability to blow hard -- as the prime measure of your ALS decline. So regardless of how inadvisable it is, I plan to try to develop some regimen to increase my FVC. I talked with the chiropractor, who concurred with me that taking a forced deep breath and then letting it out with some resistance might work. We shall see. Last time I was at 94 percent. Maybe I can get that up to 95?

I had a mild headache the last two mornings. I want to attribute it to use of ear buds. So today, no iPod and no news radio via ear buds.

I went to see the guys at work. We were going to go for a run, but wound up going out for Indian food. First impression: What a long commute! Amazing that I did this twice a day every weekday. Everything in my cube was exactly the same as when I left, even the sticky notes. The oldest and slowest computer was gone, though.

Good to see the guys.

Wednesday, March 03, 2004

14 ... 41

I picked up some more riluzole today at the Costco pharmacy. The timing is good, because I'll have more than enough for our trip to Hawaii. Oh, didn't I tell you? We're going to Hawaii! To see Ronolulu. I tend to make rash, irresponsible, hedonistic decisions like that whenever I receive a death sentence.*

I did 14 push-ups today, a post-diagnosis record. I also squoze off 41 Grip Builder squeezes on the left hand and 137 on the right. Maybe I should plot that to see which arm is getting stronger faster. Yes, arm, because this thing has a major effect on the muscles in your forearm. I was looking at how my right forearm muscle responded to the squeezing by getting all pumped, as compared to my left arm which did not seem to get pumped at all (the muscles on that forearm are kind of jiggly and soft). And I was about to get discouraged about it. I was thinking that it would be nice if there was some objective way to know if exercising an ALS-effected muscle had any effect. (The ALS book I am reading says that there have been no good studies). And then I realized, wait, the record shows I am getting stronger on the left.

*You ought to be a little more hedonistic yourself, since you also have recevived a death sentence, just, a more indefinite one.

P.S. Anna (who I don't know) provides an interesting URL appropos the pro-Bush email chaff I dissected a while back. Maybe Bush is the worst president ever?

Tuesday, March 02, 2004


I wouldn't call it a cramp, but a sort of proto-cramp sensation, like a little knot in my left calf, had been dogging me, ever since those two runs up into the hills. And we ran out of bananas, and for a day yesterday my whole body, including the arms, felt pre-crampy when yawn stretching. Bananas contain potassium, the lack of which is the usual cause of muscle cramps. But it could have just been sleep deprivation. So this morning the first thing I did was eat a banana, and I felt fine all morning. Then just around noon I was doing some chores and I was scooting or leaping around the house in my usual way. Most people move with sedate dignity. I move more like a squirrel dodging a car. A thought occurs to me and I go. So, I leapt from the laundry to the computer (or whatever it was), and noticed that the proto-cramp in my calf had come back. So I ate some lunch (broccoli chicken), and walked to the mall to get some lunch (!) and look for a potassium supplement. I had to remind myself to walk slowly. My usual walk is a power walk. But it occurs to me that this imposes a burden on the calves. Walk swiftly and those muscles have to keep working and working, never getting a rest: pop-pop-pop. Go jogging and they are required to contract at a much more leisurely pace: thump ... thump ... thump. At the mall I went to three places and found that each had a potassium glauconate supplement of about 550 mg that delivers only 90g of potassium, or 3% of the daily recommended value. I am no biochemist, but this indicates to me that there is no easy way to stably store potassium such that it passes through the human gut and is delivered to the tissues. Other than in bananas. The pill would have to be 33 times bigger to deliver the daily recommended value.

While I was looking at pills, a marshmallowy woman handed my a bottled water and asked me if I could open it for her. "My hands aren't working very well today," she said. I opened it for her, thinking, that could soon be me.

So I got some weight-lifting gloves instead, since I have noticed that some of my lifting with the free weights abrades my wedding ring. And I got some take-out Chinese food (fried rice with honey chicken). Saw a guy wearing a blue superhero costume with a giant peace sign on it. Today is election day. I voted. Did you?

The 28 February 2004 issue of New Scientist contains a page 17 article on multiple sclerosis which makes me aware of a type of cell I knew nothing about, an 'oligodendrocyte,' which according to the article produces the mylein sheath that nerve cells need. Apparently a 14-year-old girl died of a bout of MS and they autopsied her and found that the oligodendrocytes were dying. This argues against the theory that the immune system was attacking the sheath.

I don't at this time know if sheath loss is an issue in ALS. I kind of get the impression that the motor nerves die, and that of course results in some myelin shedding. But I don't think there is a major theory that the motor neurons lose their sheath and that kills them. So, while interesting, this aticle about the oligodendrocytes may not be relevant.

Also in that issue, on page 27, is an ironically amusing article about the possibility of creating bionic limbs which would move naturally in response to the signals from the nervous system. That's all very fine for Christopher Reeve, but if your motor neurons are dead, as in ALS, it's kind of useless.

A friend of mine pointed out a piece in the 21 February 2004 New Scientist magazine, by Ian Wilmut of the in Roslin Institute (UK), in which he says he is planning to apply for a permit to take cells from English ALS patients, and from those cells, clone human embryos for 6 days to obtain "ES" cells (Embryonic Stem cells). He intends to use the cloned cells to grow ALS motor neurons, and study them.

Wilmut led the team which cloned Dolly the sheep.

This roundabout route is necessary, he says, because it is currently impossible to obtain living motor neurons from ALS patients.

I don't know, but one assumes that if you got a look at a living ALS motor neuron, you might have an "Ah ha!" moment in which you instantly recognize some causative factor. Which would imply a possible therapy. Or maybe there would be no "Ah ha!" moment. But this step needs to be taken, just to cover all the bases.

I wonder how 'impossible' it would be to remove a motor neuron from an adult. Or is it more the case that you could remove one (with some great difficulty), but that it would quickly die and be no good for study? I assume Wilmut wants to have dozens, or thousands, of cells living in a nutrient bath, rather than one dying, ragged, torn neuron from an adult.

Also, I have heard quite a bit in the news recently about finding stem cells in fully-grown adults (e.g. in the skin, etc.). Wouldn't this be another way to culture some motor neurons without having to create embryos?


Monday, March 01, 2004


So I had to get this 8' by 4' by 3/4" sheet of plywood up over my head and onto the 'ceiling' so I could nail it to the exposed floor joists. A piece of wood like that is not only awkward, it is heavy.

First I lifted one end, which was easy, and kind of dragged it on my back so that the edge was flush in position in the corner where the wall meets the ceiling. The challenge was going to be lifting up the other end, the edge down at the floor, while still keeping the raised edge jammed into the corner. I had four 2x4s that I was going to jam under the plywood once I got it in position. They would hold it up while I nailed it.

Yes, I could have asked someone to help me. But that was not the point. The point was to do it myself, just like I had before the baby was born and before I was diagnosed with ALS.

I was a bit awkward, especially since my lower back is tender, and I had a couple of false starts due to the top edge coming out of the corner. Then I raised the floor edge a little bit by using a crow bar, and slid segment of a 2x6 under it. Once that was done, I had an edge I could get my hands under. I wondered if I was strong enough, or if my legs would give out during the lift. But then I thought, all that weight lifting you did has to have given you a better chance at this. I thought through the motions I would make, and practiced them on an imaginary piece of wood. When I actually did it, it was surprisingly simple and there was no grunting or trembling. Other than during my victory dance. I placed the 2x4s under the sheet and tacked up the sheet with four nails. Back in the old days I would have then marked the nail lines in pencil and nailed it all up. And my arms would have ached (it's surprisingly hard to work over your head, even when you don't have ALS). But today is a different day, so I savored my victory and came back in the house.

Last night I was reading in the ALS book about when to pick your wheelchair, and what kind, and how to go from pads on your chair to canes and walkers and what do you when your mouth is no longer able to speak clearly to most people. And your ankle braces to prevent foot drop. That's all very sad, and very good advice I am sure, and I feel sympathy for the people who have gone through it and are going through it now. And I don't blame them for the rapidity of their progression. If I were progressing rapidly, I would have to come to terms with it. In this very blog. Still, my reaction while reading was to be ticked off and defiant If that's the plan "They" have for me ("They" being and amorphous term used to imply an enemy), then They are freaking going to have to come and get me.

...I know it's all testicular ranting, but that kind of combative emotion, no matter how primitive, is what I feel. And I think it is good to feel that way. I would like to be able to meet Them and kick Their rear end right out through Their stinking teeth.

Don't forget to check out the So, You're Going To Die! transcript.

OK, last night the baby woke at roughly 1:30 and 4:40. I slept through the first one. My wife slept the rest of the time when not nursing the baby. We both feel a lot better, though not fully back yet. The baby is starting to walk a lot more, it's her preferred mode. So maybe she is a toddler now.

I put a photo of the garage sheer wall project on Fotolog. But Fotolog it starting to suck now. What happens if Blogspot gives out? Fortunately, I have been saving my posts to my own computer too, so if goes kablooey ... I will still have the info. The Metrics page is particularly useful.

Today I am going to work in the garage.
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