Tuesday, August 31, 2004


Zee lovely wife she tells me I must go to the doctorb about zee cough. So I go.

The good news is that my blood pressure was 110/76. That's normal. Maybe she made a mistake.

I choke and cough a lot when I eat, due to the way ALS weakens the muscles that make sure that the air goes one way and the food and drink go the other way. But as a result of this cold-cough, I have been coughing much, much more when eating. And sure enough maybe the salivas and zee sinus drips they go down the wrong way sometime?

(By the way, if you are grossed out by all this, let me say that part of the reason I write the blog is for me (OK, by some philosophies, all of the reason), and part of the reason is for you pals of mine, but also, part of the reason is for people who may have ALS and want to read about what it is like, and get useful information from someone who has been there. That's why the gross details).

The main thing that is a drag about the cough is not that I fear some kind of ALS-related loss of breathing capacity (coughing is probably a good workout fro the breathing muscles) -- I'm not at that stage yet. It's that the cough or infection or whatever makes my whole body feel weak an assaulted. I feel it is in times like this when the neuromuscular deterioration that characterizes ALS advances.

The doc listened to my lungs and said that mayhap I have bronchitis because zee phlegm she go down the wrong way. And so he gave me a bag of freebie Augmentin (a pretty feeble antibiotic) which I am supposed to take twice a day with meals for five days.

He also said I should suck on hard candy when I have a cough, because that produces more saliva and will help make the phlegm go down the right way.

He also said I should take a double dose of Robitussin DM. I said I thought I remember reading that a scientific study showed that cough syrups have no effect. The doc said that Robitussin contains a local narcotic that actually works.

OK, whatever.

So, when the doc asked me to get up on the table so that he could listen to my lungs, I tried to back onto it and slipped off. So then I tried again and slipped off. Thinking that this would look to him like an ALS thing, I reeled over to the wall which was quite nearby in the tiny examination room, pushed off that, and got up enough momentum to successfully mount the table.

Observing this, he smiled and said, "You do have a style about you."

And suddenly I wondered: Is he gay? I thought I was the only one allowed to say presumptive yet kind things to people.

Monday, August 30, 2004

G-Hack! G-Hack!

So last night right before bed I took the Indian Cough Remedy. I drank almost all of it but the wee bit at the very end. I had been stirring it continuously and slurping down mighty quaffs of pepper, but at the very bottom it was pretty much a solid pepper dredge-pile. Like drinking coffee grounds. The soma gagged on it and I decided to declare victory and get out. Not much coughing in the night. The children, mercifully, slept until 6:23 AM. Except for that time my son got up and pestered my wife. But she dealt with him and I drifted off.

WARNING: You are about to enocunter a bodily-fluids reference. Please avert your eyes if this kind of content would disturb you...

In the morning in the shower there was much hacking and copious production of goop. That in itself seemed like a victory. The hacking cough, however, continues. It is still possible that my friend from India was playing a little joke on me. ("Next let's see if we can get him to drink his own pee!" Hee hee!") But I doubt it.

We went to a birthday party yesterday for un otro chico, y we gave him a chess set as a present. He's five. The box says for six and up but you know these kids around here are smart. My own boy is getting better at chess. He now seems to have absorbed that it is a conflict, and plays the game in terms of threat management and threat employment. He seems to have benefitted from the chess puzzles I posed to him, simple ones about how to apply mate when having a huge advantage over a solo king.

No, I am not pushing him. He was asking for chess puzzles (verbal this time) when we were on vacation.

Don't worry, it's all very sporting.

Sunday, August 29, 2004

Back from the Grave

It would have looked like a vacation to you. And it was. But. But the kids did not sleep properly. You have no idea how hard it hits me to be woken several times in the night. That was awful. Plus, the hacking cough is still with me, and makes a point of flaring up when I lie down. And the mosquito. Oh, yes, and that. These combined to turn me into a stumbling mass of quivering jelly.

But yesterday we came home. I got the hiccups on top of the cough and the exhaustion, just for a little joke from the Universe. But mercifully they went away. And last night, aside from a dream about misplacing my shoes, I slept well all night. Sigh. And now I wake refreshed.

I hope.

But I am considering the Indian Cough Remedy.

My kids are wonderful and I took many wonderful photographs of them. After we got back.

Nothing much I can say except that today I plan on feeling better.

Cateye posted his proof that 2=1. I'm not, let's say, a professional mathematician (Who is?!). So I plan to go over this one carefully until I spot the flaw.


Wednesday, August 25, 2004


Did you know that and statement beginning with "Maybe..." is a true statement?

Maybe I can fly. Maybe two equals five.

Tuesday, August 24, 2004

Affirmation jog

I just ran around the block once, an "affirmation jog," a tradition I started when all this medical trouble began. Today's time: 4:05. Not that I was pushing it. I was trying to go slow, because the right calf was sending warning signals, and because the leg's knee action is slow and stiff. I previously attributed this to muscle weakness and slowness on the left side, but now I think that maybe the joint is just stiff, or maybe it is ALS plus conventional stiffness. I got conventional stiffness in my left ankle, recall. And stretching fixed that. Not the ALS bit but the stiffness bit.

So I will talk to my lovely wife, and maybe the physical therapist, about some stretches I might be able to do.

My wind was good, despite the weeks of coughing I've had. It's been a long time since I jogged. And I went to the gym two or three days ago, the first time in a long time. I'd be in there more, but the kids have been waking up in the night, the girl in particular. We think she has teething going on. My lovely wife took her to the doctor today and she checks out fine.

I recall that when this problem began, and I started the affirmation jogs, I more than once finished them off with a dramatic sprint at the end. I'm not saying that's not possible today, but let's just say it's highly inadvisable and I'd likely wind up with a scab on my face.

Support the Democratic Ticket

In the aforesaid issue of New Scientist, I also read about bloggers raising funds for political campaigns. Some have raised hundreds of thousands of dollars. The article says that "The Democratic campaign uses tracking software to keep note of which sites donations come from." That intrigued me.

Here is how you can contribute money to the Democratic ticket. I want my site to show up on the Democratic list at least once, so I'll be making a contribution, myself, using the link in this post. Maybe you will too. (Unless you aren't a U.S. citizens, that is. But you non-American types can always give to MoveOn.org).
Tummy time

A letter to the editor in New Scientist magazine makes the case that in narrow, confined spaces, it is more tolerable for a person to be on their stomach than on their back. MRI machines, the letter points out, put the patient on their back. “...there seems to be something prfoundly unnatural about lying on your back with a hard surface just above your nose.”

Brilliant. The solution would be to flip people over and send them in that way. However, and this is a big however, you’d have to enable people to bring their arms up under their head. To be in there head first with your arms pinned to your side would be terrifying.


Monday, August 23, 2004

Hairy Kerry

There are two interesting 1971 interviews with John Kerry on the web. They can be found at C-Span. Get a load of the size of those microphones!

Here's the transcript of his 1971 testimony before the Senate. Thanks, John.

Thursday, August 19, 2004


Papa's got a brand-new 250 GB hard drive. Well, 232 GB available space. Reason: Kid videos suck up a LOT of space. Install time: About 20 minutes, going really slow, and vacuuming the room. Trouble: None. Reason: Apple Computer. New drive name: Keats.

Kerry's 2004 Victory

Let's not call this a prediction, let's call it a wish. Here's what I hope the electoral vote outcome will look like after the November election (if there is one). Kerry wins with 272 electoral votes.

Yes, I am aware that he is currently ahead in Florida and some other states which I show going Republican. I just feel that through dirty tricks and fraud, the Republicans will be able to take these states.

And let's not forget all those rabbits waiting in the hat.

For those of you not familiar with the American electoral system, and are shocked to see Kerry winning despite so much red, keep in mind that some states are geographically large but sparsely populated.

Here's the fun tool I used to build this, and better yet, it contains historical information on all previous US presidential elections.

Wednesday, August 18, 2004

The rich get richer

Thought you'd want to know.

No real point to this post except that it demonstrates that I have learned how to add photos directly into the blog.

600 mg

Bushra, thank you for the long post.

The pills I have here are 200 mg each, so at that rate you took three. I have taken four successfully (after my wisdom teeth were taken out and I wanted to get OFF the vicodin, which, effective as they were, also scared me a bit by being TOO effective) ... and I have a buddy who is an extreme athlete who I know has taken 8 at a time, which would be, uh, doing the math: 1600 mg!

I'm surprised he didn't drop dead, but he's half ape, half mule.

I also have zee high blood pressure, or let's say, in the lower part of the high range (130/84). The warnings on the ibuprophen I have don't say anything about blood pressure, as such.

I recall that you have migraines, but I don't know if you are in any other ways afflicted. Did you talk to your doctor about your impaired limbs symptom?

I know you're not supposed to take them with aspirin. Did you? Nightshade? Cyanide?

CJ, zee dry wheezing cough is no good thing. Let me know if the ICR works for you. Think of it as like coffee.

As soon as this dry cough is behind me (and it may be a while, folks), then I can do that MRI the radiologist wanted.

The other day, after my lovely wife and I saw The Manchurian Candidate, we spurned the Barnes and Noble (the mega-chain) and went into the locally-owned bookstore and looked at books. I saw some things and when we got home I ordered them:

Inside the Kingdom by Carmen bin Ladin
Dress Your Family in Corduroy and Denim by David Sedaris
The 9/11 Commission Report

Whence did I order them? From Barnes and Noble. I think it is so cool how they have a link for most books you are interested in, letting you buy the book used from locally-owned bookstores all over the country.

Oh by the way, on August 13 I forgot to mention: Happy 7th-month diagnosis anniversary!!! Pfft! I say to you ALS (while I can still move my tongue like this...)

Tuesday, August 17, 2004

Indian Cough Remedy

So I have this annoying wheezing cough. These coughs tend to stay with me for weeks or months ar a time. I know (!). Ever since Prague it's been that way. So it occurred to me that maybe the wheezing cough will degrade my lung capacity in that way that is so unfortunate for people with ALS.

So I thought of the Indian Cough Remedy, the mixture of hot milk and black peppers that my co-worker told me about before Thanksgiving last year. When I used that remedy in October 2003, I could only take down about half of it. But it had the most miraculous and immediate effect on my wracking, heaving cough at that time. The wracking, heaving cough went away. Zip! Like that! It was replaced by the occassional, manageable, dry wheezing cough. But nothing like the convulsive punishment of the previous cough.

So while worrying today about the possible damage to my pulmonary capacity from the cough, I considered using the Indian Cough Remedy. But then I had a new thought: Maybe the ICR was the precipitating cause of the ALS onset?!?!


I would rather not think so, and it seems unlikely, but I stopped taking ibuprophen on the wild chance this it was involved, and I started cracking my knuckles again, just in case of the wild possibility.

So I'll ask the neurologist. Just in case he has a thought.

But I hate the dry wheezing cough.

Sunday, August 15, 2004

Utopia is a place with no fashion

Mis-heard Ursula K. LeGuin to say on the radio: "Utopia is a place with no fashion." This is astoundingly true. However, she said something else with more generality and less zing.

Yesterday and I think the day before and yes today I have the dry wheezing cough. Annoying, kicks in when I talk, or lie down or stand up. Makes it hard to go to sleep, or go back to sleep after the baby wakes up at 4:45 AM. Thankfully my wife takes care of ALL the night waking of the kids. Mostly because I have ALS and she wants me to get sleep. I am grateful.

Go see the movie The Manchurian Candidate. My wife and I gave it a five out of five. It's even better if you've seen the original with Frank Sinatra. We got to go because some wonderful family members came into town and watched the kids for an afternoon.

I have had to cancel the research MRI twice now, once for positional vertigo, and once because of this cough.

Friday, August 13, 2004

"All done! Poddy! Poopie! Yay!"

My sweet 19-month-old daughter just pooped, not for the first time to be sure, on the potty. I was lying on the floor staring at the ceiling, and she sat herself on the potty, browsed through a book, and did her business.

I am so proud of her for showing independent initiative.

It helps when you have no pants on, and that was her status. Now that she is potty training we let her run around at least a couple of times a day with her cheeks to the breeze. This approach worked to get our son potty trained early, and it seems to be working with her.

Wednesday, August 11, 2004


OK, it's not that bad yet, but I have the cold germ the kids have been bandying about for a while now. The germ, yes, but I have not developed full-blown symptoms, so I am not on the misery train. But my energy is a bit low and I lagged while walking a second trip up to preschool this morning. The second trip was because I had forgotten to drop off some of the things I was supposed to. No, not my son. He was deposited successfully.

Anyway, he seems to have gotten over his attack (the guy was miserable for a couple of days), so I am hopeful that my immune response will eject the invader soon.

Thursday, August 05, 2004

Cruise legs

First of all, thanks for all the comments and research you all put up on my last post!

Yesterday I went to Costco to pick up my riluzole prescription, and on the way out there were the usual milling throngs of people. As I sought to get around them, my 'cruise legs' popped into gear. I didn't do it on purpose, but suddenly I was zipping through the crowd as I would have before ALS. When I noticed how fast I was walking, I slowed down. But it's an indication of how well my legs and my energy are doing.

Yes, I do look at the Sitemeter for this blog from time to time, and today I saw this recent hit from house.gov (The United States House of Representatives):

Search Engine:

Search Words:
"rectal itch"

Now, I was curious as to when I wrote about myself having a rectal itch, because... [***Blogspot joke truncation mechanism enforced here***]. But it turns out I was writing about my son getting pinworm in his rectum.

I just hope those people in the House [***Blogspot joke truncation mechanism enforced here***].

But enough of this hilarity.

Yesterday my lovely wife and I had a date: We went to the hardware store and bought a curtain rod, some black 'chalkboard' spray paint ('Make a chalkboard on any surface!"), and a motion-sensitive night light for the bathroom (the old light-inhibited one was stuck on all the time, even during the day). The spray paint made me wonder if it would be useful in Afghanistan and Iraq, where many kids and teachers don't have basic school equipment. Typical American solution: "This can of spray paint will make schools for you! Love me now!" Did you hear about those battery-powered, talking educational devices they are going to give to women in Afghanistan? The intention is nice, but I'm not sure it will be a fit.

Yesterday my lovely wife and I dropped off some bags of used baby stuff at Goodwill (we're not planning on any more babies...) and then stopped for lunch at a cafe. My boy had gone to preschool that day with some kind of cold (perhaps 'the summer cold season,' as joked about in that cartoon, is here), so I used my lovely wife's cell phone to check our voicemail and indeed the teacher had called saying he was feeling poorly and we should pick him up. So we did.

The motion-sensitive light is now installed in the bathroom. The garage rubble has all been placed in buckets by yours truly. It'll take about six months to get rid of the rubble via the house garbage, five gallons at a time.

I was going to put in the blocking today, segments of 2x4 down at foundation level, but I started spray-painting the curtain rod parts instead. It came in white and we want it black. The stuff has all sorts of ghastly warnings on it about the lung and nerve damage from breathing the vapors.

I leaned the rods upright inside the opened wall (where I have torn the drywall out), and tacked some nails into the risers, from which I hung the small pieces. The great thing about using the open wall as a backdrop for spray painting is that it will all be closed up soon, and no one will see the spray-paint marks.

I put my eye-protection goggles on, then opened the window and door in the garage (first time we have ever opened that window), and stood outside the garage and hyperventilatd for a while. Then I went in the garage and sprayed the curtain rod components without once breathing. After another session of hyperventilation outside, I went back in, locked up the room, and exited to the laundry room. There, I resumed breathing, took off my work shirt, work pants, and work shoes. I went out through door to the garden.

Bushra, while I did go into descriptive detail about my limited impairments, I hope I gave the impression that they are as yet minor and peripheral. That's why I can do all this DIY work. I am strong and energetic.

Monday, August 02, 2004

Monosodium glutamate submarine

My clinic nurse says: "Rule of thumb-MSG is neurotoxic and should be avoided by the entire universe!!!!!" She adds: "Watch canned goods, and convenience foods like barbecue chips as well. Anytime they say "natural flavorings" there's a big possibility it's MSG."

I told her, in a saintly tone, that I rarely eat junk food anyway.


...I ate some of those yummy Ramen noodles. My daughter pronounces them "noonoos" and demands her share in a very charming way. I have been eating a lot of Ramen noonoos recently, not sure why. And guess what? The second ingredient in the flavor packet is ... monosodium glutamate.

I'll have to find a Ramen substitute, since I do like them so much. I bet that the local natural-foods store has some kinda hippy/organic thing. With no MSG. Or the Asian-foods markets.

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