Friday, March 31, 2006

Happy with it

When the estimate for the hugely expensive addition came in, I was content with it, because it wasn't as high as I feared it would be. I decided that the price was right.

So now, when I see that they used brand new lumber -- that we paid for -- to build forms for the foundation, and stacked it up neatly after removing the forms, I tell myself not to wonder about how many dollars they'll earn back when they resell that lumber. And when I see a guy using our hose to meticulously clean the metal stakes that held the forms in place, I tell myself not to fret that we're paying for his labor on behalf of the company.

An addition is a luxury expenditure, like buying a car, only much worse. Yes, there is going to be same fat they slice off of you, but if you were happy with the total sticker price, stay happy. Don't fret.

Thursday, March 30, 2006


These days when walking, or going on stairs, or getting into the shower, I carefully plan each step and each motion. It's like an EVA performed by an astronaut. The astronaut talks with mission control about each step in advance:

Ah, brainhell, first step into the tub and THEN turn to face the water. We don't want any unplanned vectors to send you spinning out of control.

They've poured the concrete for the foundation of the addition to our house. Both sets of parents are willing and able to contribute to the enormous expense of it. That's lucky for us.

Wednesday, March 29, 2006

Cold foot

Yesterday I saw the nurse practitioner at my GP's office regarding the swelling on my left shin. She noticed that my left foot was much colder than my right. Once she mentioned it, I verified it. She said the pulse was strong in the left foot, which tends to rule of circulatory problems. She didn't think it required a biopsy (I asked). She's hoping that it's just a bug bite or some random thing. But if were a bug bite, I would expect the swelling all around the bite, not above it. The only mark we see is below the swelling. Given that I'm on a daily two grams of IV ceftriaxone, she said we can be sure it's not an infection.

Riverbend's blog is worth looking at today, for a depiction of what it's like for civilians trying to live through a war.

Tuesday, March 28, 2006

Hamid the Talib

You may recall that on February 27, 2006 I posted about Ted Rall's mistaken claim in a cartoon that the 9/11 Commission says there's no proof of a passenger revolt on flight 93 -- and that they never entered the cockpit. The report of the 9/11 Commission said just the opposite.

You may be surprised when you read that Afghan President Hamid Karzai was a Taliban official in 1997. I sure was, when I read it in Ted Rall's 3-27-06 cartoon.

The guy is famous, but he actually has replied to several of my emails. He replied to my question about the 9/11 Commission Report. "Check it out. It's in there," he wrote. I did. It wasn't.

I blogged about his error later and emailed him the post. Dead silence. He must think I am really Ann Coulter, that loathsome wart.

So this time, rather than blog about it later if he's wrong (or right!), I'll let you see the sausage being made. Last night I emailed him:

OK, it's facts time again. Your 3-27-06 cartoon depicts Hamid Karzai as a "Taliban official 1997." I tried to verify this, but found contrary indications. Wikipedia, for example, says:

"After the Taliban drove Rabbani out of Kabul in 1996, Karzai refused to serve as their U.N. ambassador. In 1997, Karzai joined many of his family members in United States, from where he worked to reinstate Zahir Shah. His father was assassinated, presumably by Taliban agents, July 14, 1999, and Karzai swore revenge against the Taliban by working to help overthrow it."

I some how think that if Karzai had worked for the Taliban, I would have heard of it. Your source, please?

He replied:

Don't believe everything you read on Wikipedia. It's updated by literally anyone who wants to, which causes the politic entries to be tainted with bias. The fact that Karzai worked for the Taliban is well-documented; I could find it again if I wasn't in the middle of trying to get out my next book.

Some research by RusticateGirl turns up a link that says:

In 1994, Karzai joined the Taliban and helped push warlords out of Kabul, but his alliance with the movement was short-lived. "He left the Taliban movement due to the foreign interference in Afghanistan's affairs," Abdul-Malik, a close aide of Karzai and his brother-in- law, told Al-Ahram Weekly from Quetta. "He does not want to be a part of any regime or any institution," Malik said. After his falling out with the hard- line religious movement, Karzai headed for Quetta in 1997 to join his father and younger brother Ahmed Wali Karzai. In Quetta he set up an office to launch a struggle for the Loya Jirga while strengthening his ties with his tribe.

And she found another, which says:

As late as September 2000, Karzai told the Atlantic Monthly: “The Taliban were good, honest people. They were connected to the madrassas in Quetta and Peshawar, and were my friends from the jihad against the Soviets.

(Karzai) close relationship with the Taliban continued for a number of years. He met with Mullah Omar on a number of occasions and in 1996 was offered the post of the Taliban’s UN representative, which he politely declined.

But these aren't very MSM sources, I think. Searching on the quote "The Taliban were good, honest people," didn't turn up an Atlantic Monthly link for me, but it did produce a link to England's The Independent:

When the Taliban emerged to challenge the mujahedin, Mr Karzai sided with them. "The Taliban were good, honest people," he says. "I had no reservations about helping them. It was only in September of 1994 that others began to appear at the meetings – silent ones I did not recognise, people who took over the Taliban movement."

When the Taliban offered him the post of ambassador to the United Nations in 1996, he refused, going into exile in Quetta, in western Pakistan, and keeping open house to anyone who came to visit.

So if Wikipedia is right that "In 1997, Karzai joined many of his family members in United States," it is possible that in some part of 1997 he was still working with the Taliban. So Rall may be right on his facts. Huh! I didn't know Karzai ever worked with or for the Taliban. Go figure.

On another note, I think we now have proof that the claims that Bush has "protected" the mainland US from terror attacks over the last four years are just taking credit for good luck. The US is naked:

WASHINGTON (Reuters) - Four years after the September 11 attacks, investigators were able to easily enter the United States with enough radioactive material to make two so-called dirty bombs, according to a report on a government undercover investigation obtained on Monday.

Two teams made simultaneous entries at the U.S.-Mexican border and the border with Canada carrying radioactive material in their vehicles in December 2005, the Government Accountability Office (GAO) said in the report on its investigation.

Left grip is 23 pounds (22, 23, 21), right grip is 68 pounds (62, 68, 67), inhale volume is TK mL.

Monday, March 27, 2006


Saturday night when preparing for bed I noticed a strange swelling on the inner edge of my left shin. It did not hurt or itch, but it was swollen. The photo here is atrocious because my Canon PS A520 camera's flash has stopped functioning properly in synch with the 'shutter.' The flash goes off, but at the wrong time. However, I think that this photo indicates a bizarre deformation, which is accurate.

I wondered briefly if perhaps my muscles had bunched up during the night due to leg cramps. I had been forgetting to take my quinine before bed, and was off of creatine temporarily. However, if that had been the case I would have noticed this swelling in the shower in the morning. It must have happened during the day.

My next thought was that it was some complication of the antibiotics. My spectacular wife called the visiting nurse, who said that if I had shortness of breath, we should call 911. I didn't. My breathing felt great.

My observant wife noticed a small reddish splotch right below the swollen area. She asked if it itched or hurt. Nope. Possibly a bug bite?

I took Benadryl and went to bed. By Sunday morning the swelling was completely gone. However, by Sunday evening it had returned in a mild way, perhaps a third to a half of its former size. By Monday morning (today) it is down to about a tenth of its maximum size.

I also have mild aches in my right hip joint, and left shoulder and elbow, which I thought might be from sleeping too hard, or maybe from lack of quinine. It's nothing I've never felt before -- I recall having this kind of hip ache a few times even as a teenager, and from time to time over the years.

It would be cool if these aches were part of some super-mild, super-slow Herxheimer reaction. But that doesn't explain the swelling.

Left grip is 27 pounds (25, 25, 27), right grip is 68 pounds (65, 63, 68), inhale volume is TK mL.


Sunday, March 26, 2006

Poopie report

The new scheme of taking the Namenda twice a week instead of daily seems to be paying off. Namenda helps control the symptom of involuntary, inappropriate laughing that my neurological disorder inflicts, but it is also constipating. Since I adopted the new policy, I have produced on six of eight days -- and the laughing, though slightly increased, is not out of control.


Saturday, March 25, 2006

The anatomy of failure in war

Last week I finished a book by Cohen and Gooch: "Military Misfortunes, The anatomy of failure in war."

Awkward, poorly-written and deficient in argumentation, it is nonetheless worth reading. The authors set out in a long beginning section to try to argue for an improved method of studying war. This is the weakest section, as they rely on sweeping, unsupported assertions, assumed reader complicity, and bad grammar to prove their case.

The inner sections, analyzing several notable military disasters, are much better-written.

They wrap up with a section restating that it's crucial to study organizational strengths and weaknesses of a military in order to improve it. Agreed, but why they wasted so much ink on baffling efforts to say so at the beginning of the book is a mystery.

Originally published in 1990, before Desert Storm, the book now contains an afterward that looks briefly at our current situation in Iraq. The authors point to two major failures: One was the failure to unify security operations and efforts to improve civilian infrastructure under a single commander (we split these duties among two directors who despised each other). A related but lesser failure was preferring instead to reward huge projects to Western firms, rather than employing Iraqis in reconstruction projects. The second major failure was the extended refusal to try to create an indigenous Iraqi security force charged with internal security (we dismissed the army, then tried to focus the new army against external threats, all while the insurgency was gathering steam). The authors are careful not to call Iraq a failure, though from what I could see before I read this book, it will go down as a textbook case.

The authors lay this failure to cope with the Iraqi insurgency at the tendency of the US military, after Vietnam, to focus on high-intensity warfare, giving counterinsurgency studies a pariah status.

I'm opposed to war as a first resort, and know that there is a huge amount of unexplored potential for achieving our interests in a way that not only avoids war but renders future wars less likely. But the reality is that, like it or not, the US is an imperial power now and will be fighting colonial wars of occupation against insurgents for decades to come. It's time we learned how to avoid them, and how to fight them.

Left grip is 28 pounds (25, 28, 25), right grip is 68 pounds (68, 67, 59), inhale volume is TK mL.

Friday, March 24, 2006


As I noted a while back, intelligence is not the same as wisdom. Often I do stupid things, usually from being too smart by half. Here's another example.

I called the visiting nurse on a Thursday, about having her change the needle in my chest. Since I had no IV dose lined up for that Thursday, I mentioned on the phone to her that I would take out the needle myself, and she could install one after the anticipated arrival of the new drugs supply on a Friday. My thinking was to give the port site a breather.


I tried removing the needle, but after all the tape and gauze, I got down to a scab, could not in any case see the needle, and could not get it out. I decided to tape it all more or less back in place, and let the nurse deal with it on Friday. After that, I decided that, since I was no longer using this needle and the tubing attached to it, I would use the scissors to cut the annoying tubing that hung down and tickled my ribs.


Then I sat at the computer for a minute or two, while my unterbrain contemplated what I'd just done. I had ... opened ... a tube to my ... blood supply! The first time I'd done that, by leaving both the clips on the tube open, and leaned over, blood had come dripping out. I hurriedly looked at the severed tubing. Sure enough, I'd severed the tube above both clips.

Fortunately, no blood was leaking out of the tube. I called my devoted wife to my aid. I got the idea that we should bend the tube back on itself and tape tightly around the bend, thus forming a seal. Her nimble fingers did the work. I now suppose that we could have tried to slide one of the clips from the severed tubing back onto the bit of tube I had left. But what we did worked.

My diligent wife called the visiting nurse, who said patients are not allowed to remove these needles by themselves. I have done so with the simple IV needles that have been in my arm. But I should have known that this was different.

Now we switch from the part of the story where I criticize myself to the part where someone else gets picked on. The visiting nurse did not react to my statement on the phone that I would remove the needle for several reasons: English is not her first language, she may be partly deaf, she does not concern herself with what patients (maybe just male patients) say, and she interrupts everything patients (maybe just male patients) say.

My industrious wife had a meeting that night. After the baby-sitter got the kids in bed, my three-year-old daughter called out that her butt hurt from going poopie, and she wanted cream on it. She evidently had not asked the baby-sitter to help her wipe, and the baby-sitter had not thought of it. I had the girl lie down in the hall, and loosened her diaper. I tried to wipe her, but she clenched up. I put cream on her bottom, and she demanded more. The doorbell rang. "I'm coming!" I shouted down the stairs. The phone rang. "Dad, answer the door!" my daughter said. I put more cream on her bottom, got her jammies zipped back up, and directed her towards her bed. I descended the stairs as the doorbell rang again.

I let two nurses in. They marveled that the new needle included in my kit was totally new to them, and that they had never worked with one like it before. The one they pulled out of me, which had been installed by the surgeon, was also unfamiliar to them. They wanted to draw my blood for tests requested by Dr. Quack, but apparently the tube interface of the new needle would make that difficult.

Several times I began saying relevant things to the nurses, and each time, nurse #1 interrupted me. Nurse #2 asked me a question, and nurse #1 interrupted my answer before the fifth word. The crowning moment was when nurse #1 asked me a question and similarly interrupted my answer because she wanted to talk to nurse #2 about something else.

Nurse #1 would ask me a question (e.g. "Why do the infusion all by yourself?"), and then interrupt four words into the answer ("My wife can help---") to ask the same question again. She did this twice in a row. That makes for three identical questions and answers.

They put the new needle in, and it hurt a bit, since it has to go through skin to get at the port underneath the skin. Then there was lots of talking, some of it in English, about how to draw my blood for the tests. They drew some into a syringe and then apparently that was no good, so they wasted that into to gauze at the bottom of a plastic bag. Small quantities of your own blood always seem like a lot, and this did too.

There was a knock on the study door. "I want to tell Mom something!" said my daughter. "Go back to bed!" I bellowed. She objected. This went in a cycle a couple of times. She cried. "I want to tell Mom something!" she repeated. "Mommy is not here! She's at her meeting! Get back in bed!" More crying, but then silence. She got back in bed.

Then the nurses were drawing out more blood and waving this great big bloody needle around, sucking blood into it, and then pumping the blood into tubes with rubbery caps. There was lots of leakage, and spots of blood -- my blood -- dripped everywhere on this flat piece of styrofoam they were using as a staging area. The blood was not just red -- it seemed purple to me.

These are good nurses, even the interrupting one. They obviously know what they are doing. But the interruptions are annoying.

At long last the ordeal was over and I got to go to bed.

A few weeks later, after I got the free electric wheelchair (thanks MDA!), I rode it for about two miles and then plugged it in to charge again. The charger indicated that the battery was full. I had been impressed by how well the battery held a charge, but this surprised me. Nonetheless, I went with it. It was only after a shorter trip the next week that I noticed myself hooking the charger to the lead from the chair rather than the one from the battery. I hooked it to the battery and it indicated charging. It had read full the first time because I'd hooked it, not to the battery, but to the chair!

Genius. I put a little tape on the leads to indicate which should be hooked to which for charging.

Left grip is 28 pounds (25, 24, 28), right grip is 68 pounds (68, 63, 67), inhale volume is 3500 mL.

Here's the inhale volume chart.


Thursday, March 23, 2006


On March 7, right before my metrics started to falter, I created the above graphic and wrote:

"If present trends continue, my left grip strength should return to where it was in January, 2005 at about 920 days after diagnosis, or the beginning of August, 2006. All we can be sure of is that present trends will not continue. It may be better, or worse, or ambiguous, but it won't be linear."

Wednesday, March 22, 2006

Let it be known

Let it be known, here's what I do, in terms of household and kid duties: The dishes. My admirable wife does everything else. Sure, once in a while I dabble in laundry, or tiny household projects, or order some groceries delivered, but she does everything, including make breakfast. That used to be my role, but several months ago I began getting up later and taking longer to shower and get dressed. She stepped in.

Dr. Quack's staff say that I can reduce or eliminate the Ursodiol, but that I must reduce my dietary fat intake as much as possible. That's pretty ironic for someone as thin as I am, who needs to maintain his weight. So I'll just wing it as adroitly as I can.

Consistent with the don't-look-back approach of the administration, Bush said Tuesday:

"Their stated objective is to turn Iraq into a safe haven from which they can launch attacks."

But I can't help wondering, and I ask you: How much chance did they have of achieving that objective before we invaded?

The people who live in fantasyland are currently hoping and dreaming that the documents recently released which depict Saddam's regime pondering the possibility of Al Qaeda operatives in Iraq means that Iraq was just inches away from being governed by Al Qaeda. They think this would justify the invasion. The administration is appropriately vague about the documents, hoping to fuel this very fantasy. Fact is, Saddam hated Al Qaeda (He didn't like competition) and was a highly effective brutal dictator. Al Qaeda didn't stand a chance in Saddam's Iraq. Now it has a GREAT chance. No, Homer, that doesn't mean I prefer Saddam, it means I don't prefer the increase in terrorist danger the administration has nurtured.
SEOUL (Reuters) - North Korea has no people with physical disabilities because they are killed almost as soon as they are born, a physician who defected from the communist state said on Wednesday.

It's probably true, but this kind of story indicates to me that we may imminently invade North Korea. Recall the babies removed-from-incubators lie before Desert Storm. I think the invasion of Kuwait was sufficient justification for military action in that case, but many Americans need to hear that babies are at stake before they're willing to kill.

Left grip is 28 pounds (23, 28, 26), right grip is 67 pounds (64, 67, 65), inhale volume is 3250 mL.

Tuesday, March 21, 2006

I wanna be an adulterer

When I was five I told my parents I wanted to be a farmer. I tried to draw a picture of a farmer on a tractor.

When I was oh maybe nine-ish, my father and I were talking and I said I wanted to be an adulterer when I grew up. He thought that was hilarious. He called my mom in to listen to this. He had innumerable jests and quips at my expense, always just beyond my linguistic reach and comprehension. My father's extended levity was starting to annoy me. I had read a reference to adultery in a book, and just guessed at what it meant, without looking it up in a dictionary. The meaning seemed so obvious to me, given the root. Finally, my chuckling father asked me if I knew what it meant.

"Yeah. It's when you kill your parents. Right?"

After that there were no more chuckles or quips on the topic. He didn't say anything, in fact.

Monday, March 20, 2006

My enemy

I vanquished the Evil One yesterday at 5:45 PM, after only 48 hours of misery, one dose of milk of magnesia, two double doses of mineral oil, two laxatives, two cups of laxative tea, one suppository, and one enema. It was still a difficult event.

I am so tired of this syndrome. It wracks the already addled muscles in my body. I have decided to stop taking the Ursodiol until I talk with Dr. Quack about it, and cut back the Namenda to Tuesday and Friday only. An increase in crazy laughing would be preferable to running the constant risk of constipation.

Left grip is 28 pounds (26, 25, 28), right grip is 70 pounds (66, 70, 69), inhale volume is 3250 mL.


Sunday, March 19, 2006


I took the wheelchair for a spin recently on a walk with my athletic wife to the video store. She walks faster than anyone I know -- including me, when I was healthy. And I used to be the fastest walker I knew ... before I met her. So she easily kept pace with it at its top speed.

I drove it out through the garage door. We keep the chair under the house in what is now the 'project room' (formerly the laundry room, until we had the laundry facilities moved into the garage.)

Two cables must be connected to power the thing. I leave them both disconnected, and charge the battery. My clever son is able to open the door leading down to the project room. He's very curious about machinery, and will no doubt try to figure out the chair. But I think the disconnected cables will baffle him. If not, I'll have to put a Kryptonite lock on the chair.

Yesterday, I took it to to the park with him and his aunt. I expected him to try to grab the controls, or ask a thousand questions about how it works. So I made him promise not to do either. He kept his promise. He was very well behaved.

Constipated today. I think it's the darn Namenda plus the new Ursodiol. I plan to stop taking both. It could be the ceftriaxone, but I've gone through two weeks of it so far, and I don't think that's it.

Saturday, March 18, 2006


The New York Stock Exchange became a publicly-traded company recently, and I predict disaster. Not right away, but eventually. Something on the scale of the Savings And Loan catastrophe, with Enron and Worldcom added in to boot will occur within the next 10 years. The swindle/scandal will play out like this: Most transparency and anti-fraud laws and regulations are enforced by the SEC, however, there will turn out to be an important role that the exchange plays in the regulatory process, representing a significant potential for the exchange to undermine the rules and permit fraud. This potential will be fulfilled in the interest of increasing exchange profits, or enhancing gains in non-exchange holdings of major exchange shareholders, potentially in the area of an attractive new investment vehicle.

Mark my words. You heard it here first.

Poll results
I'm proud to say that of the 115 people who read my blog yesterday (about average), 68 percent of the 38 people who answered the poll questions identify themselves as female. That's cool because as we know, and as I hope my male readers would agree, women are better than men. I was shocked, however, that only 57 percent of the females were reported to sleep on the left side of the bed. I expected it to be 80 percent or higher.

Left grip is 23 pounds (20, 22, 23), right grip is 67 pounds (67, 64, 65). Starting to be constipated.

Friday, March 17, 2006


Some of you are in same-sex relationships, so the second poll may not apply to you. But go ahead and answer the first one (and the second one, if you can).

You are...
Anatomically female
Anatomically male
Free polls from

Answer this one from the perspective that you are lying on your back. Left and right are defined as whatever is in the direction of your left arm and right arm, respectively:

In your male-female bed, the female sleeps on the...
Free polls from

I'm pleased to say that when the new needle went in yesterday, I thought it was going to be really aggravating, because the whole area felt tender -- and yet it was as mild as a flu shot. Just one tiny prick.

Left grip is 28 pounds (27, 27, 28), right grip is 75 pounds (75, 75, 73), inhale volume is 3490 mL.


Thursday, March 16, 2006

Civilization 3 Complete PBEM exploit

I said to the group:

Fellow Civ 3 Complete players,

I have discovered a fairly simple exploit that makes it possible to cheat against other human players. That's why I resigned my game against Marion, because I tested it out in the game against him. I never sent him a cheat-based turn. I resigned as soon as I knew I could cheat against him. Maybe you all know about this exploit already and have discussed it extensively in the past. I submitted a bug report to Firaxis via their website on 3/7, asking them to patch the exploit. I added: "I used to work at a software company, so I know that patches can take a long time. Please let me know what your timeframe is, otherwise I'll need to publicize this so that no players are taken advantage of. And, thank you for the great game."

That was over a week ago, and other than the automated thank-you, there has been no email from Firaxis. So my question to the group is: Should I describe the exploit? If I do, and if you're not already familiar with it as a community, there would seem to be three possible paths forward:

1) Honor code (hard to enforce, so I don't favor it)

2) Modified honor code (allowing restricted use of the exploit in a way such that crossing the line could be detected -- the option I favor)

3) Anything goes (I don't favor this option).

I am very new to this group, so I have no familiarity with the players, but my intuition tells me that someone must be making use of the exploit unbeknownst to the rest of us.

They replied that a patch was unlikely, given how old the game is now (version four is already out), and said to go ahead and describe the expolit.

I replied:

Thanks for the feedback. Yes, I guess it is an old game by now. Those of you with C4, please check and see if the exploit still exists in that version.

The exploit relates to the player password not being encrypted. It's stored in plaintext the saved-game file used in PBEM1. I used a file comparison utility (but really, any file editor would work), and searched for my password. It was there, right near my game name, (brainhell). So then I searched for Marion's game name (O'Shaughnessy), and found that. His password was right nearby, and when I tested it on the file I was about to send him, it worked. I was able to view his empire, his research, see all his units ... it was as if I were him.

(Marion -- I found out that your wretched desert island was joined by a long, narrow neck of land to my greener end of the same dumbell-shaped island. You had a spearman and a warrior and had just moved a settler out of your capitol. You were researching iron working and building another spearman. There had been a barbarian to the southwest of your city, but you zapped him. This is the game where a goody hut turned into a new city for me. Given that all you had was desert, and I had the greener end, I don't think the AIs would have mattered much, and I think I would have had the advantage. But we'll never know. I will try to upload a screenshot of your empire.)

Given what I had seen, there was no way I could just put the knowledge out of my mind and play on.

So, assuming that there will be no patch, several options present:

1) Honor code against looking at passwords.

2) Snooping on other human players is allowed, but not attempting to change the enemy empire. This one stinks because sneak attacks are almost impossible, for one thing.

3) Any cheating is allowed.

Basically, all three of these options stink. I hope that it will turn out that passwords cannot be sniffed in C4 PBEM files.

Let me know what you folks think, please.

In the meantime, I am interested in playing some real-time games via IP address. There's no passwords involved there (so far as I know -- never having played one).

Left grip is 27 pounds (19, 22, 27), right grip is 73 pounds (59, 65, 73), inhale volume is 3450 mL.

Play By Email

Wednesday, March 15, 2006

ALS Lyme?

Here is a post I recently made to the ALS group on Yahoo, but I could not post it to braintalk, which has trouble with my login:

ALS Lyme?

I was diagnosed with ALS on January 13, 2004. At the time, my blood test for Lyme disease was in the 'indeterminate' range -- halfway between negative and positive. A year later it was still indeterminate. These tests were done by Quest, a reputable laboratory. The experts who confirmed my diagnosis also tested me for various obscure, rare conditions, but reluctantly settled on ALS as a diagnosis. In my view, the experts were negligently incurious about the Lyme test results. These days, I walk with difficulty and my speech is slurred. I have lost a lot of functionality. However, I was still curious about the 'indeterminate' Lyme result, having heard that Lyme is a great imitator. With the help of various people on the internet, I located another lab, IgeneX, and had my blood tested for Lyme by them. IgeneX is controversial. They use a different methodology for analyzing the test results, based on published, peer-reviewed science -- but not generally accepted by doctors or insurance companies. IgeneX has even been investigated by the state of New York and, I think, the federal government, for improper conduct. In casual conversation, an expert at my ALS clinic had warned me that IgeneX is totally disreputable. My results from IgeneX were positive for Lyme disease. After quite a bit of searching, I managed, with the help of The International Lyme and Associated Diseases Society ( to locate a 'Lyme-literate' doctor. He put me on a twice-daily dose of 100 mg oral minocycline, with the plan of getting me on two grams of daily IV ceftriaxone (brand name: Rocephin), shifting after 5 weeks to twice-daily infusions four days a week with three days off. The infusions might continue for 15 months, depending on my responsiveness. This is tremendously expensive, and you can see why insurance companies might not look favorably on it. The drug is no cure for ALS. Certainly it did not save Dee Chiplock, now deceased from familial (genetic) ALS, despite her daily infusions of four grams or more. It may, however, have prolonged her life, since she did last longer after diagnosis than other members of her family tree who were afflicted. Since January 10, 2005, I have been testing the grip strength in my hands daily, and recording the data in a spreadsheet. I use an instrument called a hand dynamometer. There have been some periods where I did not collect this data, but generally the graphs have progressed downward in an inexorable trend. I had a left grip of 52 pounds in February, 2005, and by January 2006 it was at 19 pounds. My right side, which is less impaired than my left, declined from 100 pounds down to 65 in the same period. I was curious to see what effect, if any, the ceftriaxone would have on my grip strength. I began taking the minocycline orally while I scheduled with a vascular surgeon to place a "port" for IV drugs on my chest near the shoulder. But in the two weeks before the port installation, I began to notice a new trend in the graph of my grip strength. It was leveling off, perhaps even climbing, apparently as a result of the oral minocycline. By the time I had the IV port installed on March 2, the trend was clearly upward. Between January 19 and March 8, my left grip has improved from 19 pounds to 30 pounds, and my right grip (on the less-impaired side) from 65 pounds to 75 pounds. In my view, this result supports the notion that I may have ALS-like symptoms brought on by Lyme disease. I do not know what the future holds for me, whether I may recover from my symptoms and begin to walk and talk normally again, or whether I will suffer some kind of complications, or relapse. I don't claim that all ALS is Lyme, or even to know what causes my disability. But here is my message to those of you with ALS: Get a blood test for Lyme. If the test results are 'indeterminate' or even show a positive result for just a few markers, find a 'Lyme-literate' doctor and begin moderate, cautious treatment for possible Lyme.

Left grip is 25 pounds (24, 25, 25), right grip is 70 pounds (70, 66, 62), inhale volume is 3550 mL.

Tuesday, March 14, 2006

Boy Wonder

In high school, my physics teacher used to call me the Boy Wonder -- mostly in ironic tribute to my inflated ego. But the other night at dinner my son did a couple of things that place him squarely in the Boy-Wonder category. I can see that his sister is equally bright, but today's story is about the son.

Some parents push their kids to excel, driven by a competitive urge. These parents have kids who can play more sophisticated piano pieces. I can't say, but I'm not sure that those kids love learning. We try, I hope, to instill a love of learning in our kids.

We've never prompted him on this kind of stuff, but for well over a year now he has talked about sets that can be formed in our family (e.g. males in one set, females in another). He doesn't use the word "set;" We haven't explained that to him yet.

The other night he announced that he could fit any two family members in a set: Son and mother, oldest of their gender (my special wife has an older brother), daughter and father, youngest, son and father, boys, mother and daughter, girls. That was impressive, but I only decided I had to blog about it when he said "I think it would be harder to do for a family of five." He clearly thinks about theory, not just particulars.

I paid him what is pretty much the highest compliment in our family, saying, "Maybe when you grow up, you'll be a scientist."

Later that same evening I heard him repetitively pushing buttons on his sister's toy phone. "Mom, I can make the phone count to a hundred!" he said. I thought he meant that he could press one of the keys a hundred times. My wife and I both said we'd rather not hear him do it.

But he insisted, and pressed the keys so that the little electronic voice said: "Zero, two, four, six, eight, one ... zero, one ... two, one ... four," and so on, by twos, to 100.

I asked him where he'd gotten the idea for that, and he said he'd just thought of it. But a few days earlier my daughter had pressed all the buttons in order and then given the phone to me, saying that I should push buttons. I pushed the same ones she had, but then continued on by ones, making a 10, for example, by pressing one and then zero. My son was right there at the time. The conversation was about something else, so I never said anything about my method. But I think that's where he got the idea.

It mattered a lot to my father's twisted ego to be smarter than other people. My mother knew this, and when she gave both of us an I.Q. test back in 1979, she was at great pains to evade my question about what his score was. She said it was a private matter, but I was relentless and pressed her for the information over and over again, using various manipulative teenage arguments. He was sitting right in the same room, but said nothing while she fended me off. She kept saying that our scores were in the same "range," and emphasizing that the test contained a bonus factor that inflated the score of younger people. Over and over I pressed her, and repeatedly she stuck to this line. If his score had been higher, she would have said so. So I either matched him, or edged him out by a slim margin.

She worked hard to protect him.

It doesn't bother me to say that I think my son is smarter than I was at his age. Most parents would probably be proud to say so. It's a mark of my having escaped the emotional purgatories my parents are trapped in that I can be normal, and have pride in my kids.

...Granny Insanity has done some clear thinking about censure today in her "Are We Clear On The Censure Thing?" post.

Left grip is 27 pounds (25, 27, 27), right grip is 70 pounds (61, 69, 70), inhale volume is 3450 mL. Thanks to Scott for the idea that the slump in metrics might be a Herxheimer reaction. If it were that, though, I should feel terrible. Still, I like the idea that it is a mild Herx better than the scary idea that the invaders have developed a resistance to the drugs.

Monday, March 13, 2006

Mr. Ethical

There is a game I play on the computer, against people, not chess. It's very popular. Not saying which one. I discovered an easy and obvious way to cheat, which would not occur to the average player who's not a programmer. I sent a message to the game company asking them to patch the game to close the hole. Because I tested the exploit in my current game against another player, thus giving me an unfair advantage, I mysteriously resigned that game, and will forego future games until the patch is released. If the company does not tell me what their patch schedule is, I'll announce the exploit to the player community, to level the playing field. I think some of the people at the top may already know this exploit. It will be interesting to see whether they continue playing and winning after the jig is up.

Left grip is 26 pounds (25, 23, 26), right grip is 69 pounds (65, 69, 60), inhale volume is 3500 mL.


Sunday, March 12, 2006

Blog header

OK, so nobody seemed to notice when I cleverly changed my blog motto to "What if they discovered a disease and nobody wanted it?" I was looking forward to generously explaining that it's an ironic riff on the Vietnam-era quip "What if they held a war and nobody came?"

The concept was supposed to be that there would be no war. The joke here was supposed to be that people don't get to choose what disease they'll get.


But nobody asked. So then I was jumping around on the blogosphere and I kept noticing people who put biblical quotations in their blog header or profile. This annoyed me because it seemed sanctimonious and pointless -- I mean, who was going to look up these passages? It seemed like mere display, a way of branding yourself.

So then I read "Misquoting Jesus," which highlighted some passages that appear to contradict each other. Like, some say that Jesus was crucified the day before passover, while others say it was the day after. Like that.

Mark 14:12; 15:25 & John 19:14
Luke 2:39 & Matt. 2:19-22
Gal. 1:16-17 & Acts 9:26

I cited those passages in my blog header, expecting no one to ask, just as no one asked about the blog motto "What if they discovered a disease and nobody wanted it?" But several people did ask. Yet (I think) no one looked up the passages, though one guy tried (I think).

It's not meant to imply that the Bible is all a lie. The point of the book "Misquoting Jesus" (I think) is that there is plenty of human intervention in the text.

Left grip is 25 pounds (25, 25, 25), right grip is 71 pounds (70, 71, 68), inhale volume is 3500 mL. I can't explain the continued poor results. I skipped a dose of ceftriaxone the day before the slump began (I ran out), but it's hard to reasonably imagine how that would have such a rapid impact.

Saturday, March 11, 2006


Leaders like Slobodan Milosevic -- and George Bush -- can take comfort from the fact that some people will support them to the bitter end.

Greta recently posted about a Reuters report that British sources say that they and the US will pull troops out of Iraq in 2007. She writes:

As for the President, I still respect and honor all his decisions, but his PR stuff - fugetaboutit!

I commented...

My view: It's probably true but irrelevant.

This report comes from British sources. No doubt they would like to get out. It says the US has agreed to a timetable. This is probably also true. The Pentagon says there is no timetable. Once again, probably true, but they wouldn't tell us if it was. Their timetable (or the White House's) is probably semantically qualified to the extent that they're convinced it is not a timetable.

Bush is going to cut and run from Iraq, leaving a worse situation than when we arrived, having created a true terrorist training center. I don't "respect and honor all his decisions" -- heck, I didn't even agree with all of Clinton's decisions. I didn't agree on the wisdom of invading when and in the manner that we did, and I don't agree on the cowardly, reckless bug-out they're now planning. I certainly don't respect that all the talk of force reduction will be spun around the needs of the '06 and '08 elections. The administration is the teenagers trying to cope with the aftermath of their party before the parents get home.

The reality in Iraq may keep us there longer than the Bush people can tolerate. There will be lots of attempts to claim that the Iraqis are now "standing up" and that lots of progress has been made. But these will be politically-forced assessments much like the WMD analysis used to get us into Iraq. The blood will seep under the door, and loyalists like yourself, Indian Chris, and Silke will be asked to proclaim that it is cranberry juice instead.

Left grip is 26 pounds (23, 26, 23), right grip is 70 pounds (70, 70, 70), inhale volume is 3600 mL. Some kind of slippage going on?

I started the ursodiol (300 mg q12) at breakfast.

Friday, March 10, 2006

New plan: I'm gonna live!

Shortly before the port installation surgery, I bought a couple of more compact fluorescent light bulbs at the hardware store. The ones we have already have lasted years, and saved us lots on our energy bill, but one did fail much earlier than I thought it should. So when I bought these latest two, I checked the warranty: four years.

I carefully filed the receipt and the UPCs, and wrote the warranty expiration date on the bulbs. It's in 2010. My new plan, based on the improvement in grip strength in reaction to the minocycline, is to be alive and kicking in 2010.

That is, unless I am killed by an ambulance carrying Michael Jackson.

Dr. Quack prescribed ursodiol (brand name Actigall) for me, to prevent formation of gallstones that long-term use of ceftriaxone may cause. I read the drug warnings and will probably start taking it tomorrow morning with breakfast (since the pharmacist said to take it with food). It may cause diarrhea, and since the Namenda causes constipation, it would be nice if the two would balance out. Probably, though, they work out on you in alternation.

Left grip is 23 pounds (23, 18, 20), right grip is 75 pounds (72, 75, 70), inhale volume is 3700 mL. Definitely a down day on the left. I'd like to blame it on my loss of blood last night when the nurses changed the needle, but it was only a small amount, and the right grip is maintaining. I will blame it, instead, on the new needle, even through it does not hurt.

Thursday, March 09, 2006


Here's what happens when the flash is inadvertently off as the nurse is removing the outer bandage over the port.

Yesterday, as part of a plan agreed to months ago, I drove about an hour each way to pick up a nifty electric wheelchair costing about $3,600 -- and provided FREE by the MDA. Thanks MDA, Jerry Lewis, and all the generous people who have contributed over the years. If I don't wind up using it much, I plan to donate it back so that someone who needs it can use it.

Left grip is 28 pounds (27, 28, 27), right grip is 77 pounds (77, 66, 67). Inhale volume is 3750 mL.


Wednesday, March 08, 2006

Why you stay so long behind me?

On Tuesday I was upstairs urinating when the doorbell rang, as did the phone. When I came downstairs to check voicemail, I saw a guy removing from our back yard a compressor left by the construction crew. I was leaving to drop off a prescription at the pharmacy, so I took my camera with me as I headed out the door, intending to take a picture of the guy stealing stuff. But he properly identified himself, and I put the camera in my pocket. I drove off to the pharmacy, thinking about the advice I had read to keep a camera in your car, so that you can take pictures of any accident you might be involved in. We have some old film cameras and it might be a good idea to use them for that purpose, I thought.

After dropping off the prescription at the pharmacy, I drove back through the parking lot. There is a place with a stop sign and a crosswalk, where I turn left to go towards home. Recently, I stopped at this sign and an elderly lady in the crosswalk stopped in front of me, turned, and shouted "Can't you see there's a crosswalk here?" I gave her the thumbs up.

This time I stopped at the sign and was there for less than one second when I heard a bump. Thinking a cart had hit me, I looked and saw a car edge back into its parking space. I got out of my car, bringing the serendipitous camera out of my pocket. A woman in her 60s with what seemed to me an Italian accent demanded: "What you doing behind me? Why you...?" I took a picture of her license plate. "Why you stay so long behind me?" she demanded.

"Why did you hit me m'am?" I responded. I looked at my car and there was no damage. Let us all praise plastic bumpers.

"What's your license plate?" she said.

"There's no damage," I slurred, "so it's OK. I won't call the insurance company."

She was still on the offensive. "But I want get your license, just in case," she said, getting some paper and a pen from her purse.

I got back in my car and waited.

"Got it?" I said.

"...But what year is your car?" she inquired.

"Goodbye," I replied, and drove off, giving the horn a good one-second blast, longer than the period of time I had blocked the blind old bat.

Left grip is 30 pounds (28, 26, 30), right grip is 75 pounds (75, 69, 71).


Tuesday, March 07, 2006

What, no cef boost?

I think it's clear that we have not seen an immediate improvement in my metrics such as occurred the very first time I used ceftriaxone. That first jump was evinced by the increase in grip strength on the local neurologist's hand dynamometer. Yes, this data can be called into question given that I had used his dynamometer so few times, and was feeling slightly off on the day of the measurement used as my baseline. However, I'm willing to treat the data as valid. That first dramatic increase seems consistent with the article in the 1/6/05 issue of Nature. I thought that perhaps, after having gone more than six months with no ceftriaxone infusion, excess glutamate would have had a chance to build up in my motor neurons, and the recent drug application would flush it out, leading to improved grip strength. Improvements described in the study occurred within 48 hours. It's been over 96 hours since I was dosed with ceftriaxone in the hospital, and I believe that I have recovered from the stress of surgery. My wound seems healed. The lack of a sudden increase in grip strength seems to mean that either:

  1. The initial improvement was valid, but excess glutamate takes longer to build up than just six months.

  2. The initial improvement was measurement error.

These two possibilities speak to whether I have classic ALS, just Lyme disease, or some form of ALS brought on by Lyme.

The first possibility (1) seems unlikely, given the great loss in functionality I have experienced in the last six months. The second (2) possibility seems more likely, despite how valid I feel the initial improvement was. The second would tend to support the idea that I am suffering primarily from Lyme. That bodes well for my prognosis.

I got an email from Dr. Quack:

Plan is to make sure you tolerate Rocephin (about 5 weeks) then go to 2x a day 4 days a week. You will have 3 days off. This should persist about 15 months if you tolerate well.

Left grip is 28 pounds (24, 28, 27), right grip is 73 pounds (63, 64, 73).

Wishing to compare my current energy level and physical prowess the last time I had left and right grips comparable to today's, I looked back in the metrics data. On October 28, 2005 I had a left grip of 29 and a right grip of 74. That compares well to today's 28 and 73. Back then I was blogging that I was letting my wife do all the kid work, though I had surprised myself by doing two loads of laundry, and that I was unsteady enough fall over sometimes when on all fours. That sounds about exactly where I am now, so it's not as though my grip strength has improved but my overall functionality has declined.


Monday, March 06, 2006

Namenda note

I was taking the Namenda every other night for over a week with no dramatic increase in incidents or severity of inappropriate laughing. But I did notice a minor increase in laughing. So maybe I'll take two days of Namenda and skip one. Namenda has a constipating effect, and skipping sometimes is part of my plan to keep the Evil One at bay.

During the period since January 19 in which my grip strength trended upward, I continued to feel unsteady on my feet, and despite occasional good days, I sometimes wondered if I were getting more unsteady. I reminded myself to stay over my feet, do only one thing at a time, and don't get overconfident.

This morning, with the help of a plastic bag and some duct tape (to keep the port dry), I took a shower!

I was confused, and checked with the vascular surgeon's office this morning: The line from the port goes into a vein, not an artery.

Two night ago I accidentally wasted one of the ceftriaxone doses by letting it drip out of a tube that is shipped in the open position rather than closed. It makes sense, because they don't want the plastic to fuse together. I won't make that mistake again.

I spoke to the assistant in Dr. Quack's office, who said that they've told the home nursing company to provide me 60 days of ceftriaxone, and that the nursing company will continue to supply me with the drug without any further action on my part or on the part of Dr. Quack.

Left grip is 27 pounds (26, 27, 26), right grip is 75 pounds (69, 75, 74). Not babying the left anymore.

Sunday, March 05, 2006


"I thought it was going to help," Bush said. "I thought it would help remind people that if bin Laden doesn't want Bush to be the president, something must be right with Bush."

And since bin Laden is no dummy, I ask you to ask yourself: Why would bin Laden want Bush to be president?

Dresden lies in flames! This is a very good omen, because it shows that the ceftriaxone is not interfering with my G.I. tract.

I started taking a triple dose of probiotic to counter the presumed tendency of the antibiotics to kill my body's flora (which, IMO, should be referred to as fauna). I bought a powdered form of the probiotics, in an attempt to avoid choking down those huge pills. The pills, when ground up, taste like dirt, and are nasty. The powder, while still tasting like dirt, is a much milder dirt flavor, and is tolerable to me.

Left grip is 25 pounds (20, 25, 25), right grip is 75 pounds (74, 75, 73). I am still babying the left side so that I don't aggravate the incision.

Saturday, March 04, 2006

First home infusion

The visiting nurse arrived last night after the kids were in bed and showed us how to do a home infusion. By the end of her visit I had learned, or thought I had, that vicodin has a toxic backlash. The bottle says you can take two every three hours. But I was taking only one every three hours, with one or two exceptions. Maybe it was accumulated stress, or the home-invasion nature of the nurse visit, but by the time we were done with the infusion I felt a tad like vomiting. My beautiful wife says I was pale. I lay down and felt better. It's a good thing that the pain from the wound is almost completely gone, because I took my last vicodin at about 6 PM last night. I don't like them. Maybe the drug is designed that way, so you don't get addicted. I don't know. I hope it wasn't a reaction to the ceftriaxone. This time it comes in self-contained packages of powder and fluid that you crack and then mix up. No refrigeration required, thankfully. My current dose is two grams per day. It drips into me from an IV bag rather than being pushed in by a syringe.

I have to keep the wound dry for three days on doctor's orders. So I'm going without showers. Today will be day two. It's a good thing that I smell nice (the ladies have all said so), and have a very low B.O. factor. I personally will be very grateful on the morning of the fourth day, but it's not like Hans Blix will be looking to indict me.

Right grip is 69 pounds (69, 66, 66). Still babying the right so as not to pain the left.

Friday, March 03, 2006

Not Dead

Not dead yet. Port was installed. Ow... On vicodin. Lovely wife so helpful. Surgery was supposed to start at 2 PM. I had to go without food and water from midnight prior. Had eaten at 10 though and gone to bed at 11. When we got to the hospital they put me in a bed and started an IV for fluid. Some guy who was supposed to have angioplasty wound up needing a bypass instead. So my surgery did not start until 8:15 PM. For a long time it was like a vacation -- lying in bed all day. But then again I was hungry. I asked the first nurse if there was any food value in the IV and she said it was saline and electrolytes. They said they wouldn't knock me out, and would just use local instead, because they have a policy not to knock out people with ALS. So I asked the second nurse if I could drink an Ensure, since I was going to stay conscious during the procedure. She asked the anesthesiologist, who said no. Then she said that the IV contained sugars. That reassured me for about an hour, but then I had my supportive wife read the ingredient list on the bag. No sugars. We asked the nurse about it and she checked with the pharmacist and lo and behold -- no sugars. She said that for years she'd been telling people that the saline IV had sugar in it. Then she put me on a 5-percent dextrose IV, which didn't help a bit. Fifty or 80 percent might have helped. They gave me two grams of IV ceftriaxone (brand name Rochepin) in the hospital. They wheeled me into surgery, and they did knock me out, anyway. Or I fell asleep, which is unlikely. I woke up afterwards. My incredible wife took me home and put me in bed.

I brought a picture of my kids (a really GREAT picture), and gave this speech to the surgeon and the anesthesiologist, when each visited: "I know this is a low-risk procedure and I'll be fine," [flash the picture], "but here is the reason that you need to be extra careful and diligent, so that no harm comes to Daddy."

Because my left shoulder is sore from the port install, I'm not doing the grip test on that side yet. Right grip is 68 pounds (60, 68, 62). I also did not give maximum effort on the right side because it makes the left side clench a bit too, and that hurts a tad.

Thursday, March 02, 2006

Oh Evil One

I guess I wasn't paying close enough attention to my policy, or maybe I had too much faith in that bran cereal, because the Evil One struck on the eve of my minor surgery -- the one for which I am supposed to eat and drink nothing from midnight the night before until after I wake up from the procedure around three PM today.

I was lying in fetal position on the cold bathroom floor at about 2:30 AM. So very sleepy, my twitchy limbs jumping, desperately needing to void.

At six this morning I rediscovered one very cruel part of it: how hard it becomes so hard to make rain. You have a killing wine flask and it just won't flow. Ow!

And yet, remotely controlled sharks!

11:10 AM: Dresden lies in flames! We are go for port install!

Wednesday, March 01, 2006

Port update

I stupidly set the reminder for the pre-op meeting for my port installation surgery to PM rather than AM, so I failed to show up at the meeting. However, the nice lady at the vascular surgeon's office already talked to the hospital and made an arrangement whereby I can do the pre-op meeting the day of the surgery tomorrow.

I was mistaken about some of the details of the port. The home health care people say that the plastic nubbin goes under the skin, and a needle is poked through the skin once a week and left there all week. Then, I pump the drugs in through the port daily.

I was looking forward to having no more needle pricks, but alas it is not to be. I also think that it will be somewhat of a hassle to have an IV needle and dressing, plus tubing, hanging on my chest.

But oh well.

The insurance lady (Betty) at the home health care place said that they are not a network provider of my insurance company, but that they will pay the cost differential involved, and send me a letter saying so.

So we are on track for the port install. I do have a slight fear that I will never wake up from the anesthesia, but I know that's highly unlikely. Still, if my blog isn't updated for a week, you'll know I'm dead. I've said this before to my strong wife, but I want her and our kids to know that I feel happy and have no regrets. I feel that my life has been wonderful, especially because of the miracles of my darling wife and our children.

Left grip is 27 pounds (23, 25, 27), right grip is 78 pounds (69, 78, 75).
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