Thursday, March 31, 2005

C3: Side effect?

The operational tempo these past few days has been increased. My dear friend from out of town is here, and while he has helped tremendously, and made things easier for us, particularly by entertaining the kids (who love him), I guess I have been doing more things and conversing more than I normally would have. So I've been tired, in a good way, a bit.

Last night I was driving with the friend visiting from out of town, to go pick up Chinese food, but pulled into the supermarket parking lot instead. We walked all the way through the parking lot. My pal says I almost got swiped by a Mercedes. However, I don't recall any peril. We stepped foot inside the door of the supermarket. When he said, "Is this the way to Chinese food?" I thought he was joking. Then a split second later I realized my error.

I wonder if this extended mental error was an effect of the Namenda which I am taking as a glutamate inhibitor, or some syndrome related (or unrelated) to ALS. I have been reading the book "Prozak Backlash" that my pal from out of town brought to warn me off of the Lexapro samples. It worked, I am astounded that the doctors at the ALS clinic gave me the samples of this powerful and dangerous drug. Good thing I didn't take any of it. I guess you will have to take my word for this, but the book did not 'suggest' that I do something strange to match the stories in the book.

I infused the two grams of IV ceftriaxone in the mid-morning. About five or 10 minutes before the supermarket incident I took one ibuprofen and one Tylenol at the same time.

This event could be perfectly natural and not pharmacological or pathological. Exculpating arguments are:

--I have always been a "space cadet" (though I don't recall a goof of this magnitude).
--I was having a lively conversation in the car with my friend.
--I almost always go to the supermarket when I drive that route.
--I have sometimes taken a wrong turn out of habit when driving a certain way (but I usually pick up on it within a block or so).
--I was tired

Anyway, the lapse concerns me, and I'll ask my wife to monitor me too. But I am not anxious about it. Yet. If it starts happening a lot then I'll stop the Namenda. It seems to me quite likely that an anti-dementia drug could induce dementia.

I am not measuring left grip because the IV needle is in the left arm. Right grip is 99 pounds (90, 95, 99). Left leg balance is 4.72 seconds, and inhale volume is 4800 mL.

Driving to the neurologist's office, I was imagining a conversation with him, and at the same time wondering if the car at the intersection was going to turn left. After about 100 yards of coasting, it reached the point where I had to change lanes to get around the car whose intentions were unclear to me. Only as I crossed the painted line between lanes did I realize that the other car's left turn signal had been on the whole time. In the instance last night, and today, I was using the speech-processing part of my brain while driving, when I made the mental error.

My neurologist said that if I have more episodes, I can take an EEG. In ALS, the EEG, which measures what you and I would call "capacity for normal thinking," is typically normal. Mine was, at the time I was diagnosed.

I've informed my neurologist that I've decided to stop taking Namenda while on ceftriaxone. I'll resume Sunday or thereabouts.

My thinking, though it may be a crock, notes that ceftriaxone enhances the expression of GLT-1, and Namenda is a glutamate inhibitor. Acting together, and given that I appear to have a slow course of ALS (possibly indicating that I have near-normal GLT-1 expression already), the results may be an excessive suppression of glutamate in my brain. And I don't know what the effects of that would be, but my layman's hunch is maybe it might degrade short-term memory.

The thumb spasticity stopped about 24 hours after the first dose of ceftriaxone. Because of? No one can know.

Here's that ceftriaxone syringe:


Wednesday, March 30, 2005

C2: 8 inches

The ceftriaxone needle, including extended plunger, is eight inches long. The barrel is only five inches long, and about an inch across. The most important part of the kit is the stretchy net sock that gathers the IV tube against your forearm.

The chess player, Phileo, whose game against me I blogged about, reacted well when I sent him the URL to the blog entry:
Funny. Did you have a link to the game? I would like to see it.

Like Bible Man, he's probably not someone I would have sought to be friends with in real life. But chess, like blogging, can bring you into respectful association with people you consider to be outside your sphere. I think that tolerance and diplomacy, as opposed to hatred and condemnation, are the fabric of civilization. With tolerance and diplomacy, we can truly get along, even when we disagree. I ask you, blog reader, to look to the left of you, and look to the right of you, and identify those who are your friends and allies, and who agree with you on the issues, but who are intolerant and hateful to those you disagree with. Heal them.

I am not measuring left grip because the IV needle is in the left arm. Right grip is 105 pounds (98, 104, 105). Left leg balance is 7.39 seconds, and inhale volume is 4550 mL (evening measurement when tired).

Tuesday, March 29, 2005

C1: Terri Schiavo weds illusionist David Blaine

VATICAN CITY -- An ailing Pope John Paul II conferred by phone Monday with American President George W. Bush to arrange an "emergency annulment from Michael Schiavo, and marriage by fiat" to illusionist David Blaine, for brain-damaged Terri Schiavo, the focus of fierce media attention in the U.S. over her former husband's legal battle to remove her from life support, Vatican officials said.

Blaine was chosen for his familiarity with dramas of individual starvation as a form of entertaining a nation. In 2003, the American spent 44 days suspended in a box above London, reportedly consuming only water.

Blaine and Bush co-signed an executive order at Bob Jones University in Greenville, South Carolina on Tuesday. Bush declared, "We are ordering that Terri Schindler-Blaine's feeding tube be reinserted. This is a victory for freedom. And for life." Bush received a 182-minute standing ovation.

"This is like President Reagan working with Pope John Paul in the 1980s to free Poland and fight the Soviet Union," said Max Boot, senior fellow at the Hoover institute. "Some people said in 2003 that Blaine's triumph was a meaningless stunt. But now look how relevant it is."

Boot noted that Schindler-Blaine will now be free to run as a Republican against one of Florida's Democrat party members of Congress.

Left grip is 46 pounds (43, 46, 43), right grip is 98 pounds (97, 97, 98), left leg balance is 15.14 seconds, and inhale volume is 4600 mL.

The visiting nurse inserted the new IV needle today and I resumed taking IV ceftriaxone. This time it is at 2 grams per day for five days. The needle is in my left arm, so I will not be taking a metric from that arm during the infusion period. Today's metrics were taken before the new needle was inserted. The "Cn:" indicator in the blog post title indicates that I am currently getting ceftriaxone. The infusion is done with a great big syringe instead of that baby-bottle-looking thing, which they call a "home ball."

For about the past week or so I have had stronger spastic twitching in my left thumb. It makes the thumb unusable some of the time. I assume that many for the rest of you with ALS, the twitching in various places is much worse. I was just commenting to my buddy today that, while I have the same ALS diagnosis, I feel that I have been fortunate that so far (touch wood), my progress has been slower than is typical.


Monday, March 28, 2005

Check six

The roof patch is still holding despite more rain. Good. We dug up some dandelions during the periods of sunshine. I am unaccountably optimistic.

The unix diff command works fine in the OSX 'Darwin' Terminal window.

The back-scratcher my lovely wife and kids got me is wonderful.

The kids are just the best.

I found an air-combat simulator for the Mac called OSX SkyFighters 1945. I ran it a few times and crashed my plane a few times. But I also strafed my own airfield and blew up the fuel tanks (I expect a promotion for that), and I successfully landed the plane. This is a realistic flight simulator, not a shoot-em-up game for kids. And it runs on the Mac! It even allows internet play. My brother-in-law will be hearing from me soon about this. This is one of the goals I have had for 10 years or more: Form teams with buddies and play air combat on the internet while talking to the buddies in a conference call. But don't worry, we'd only fly against against bad people. And ... and ... our planes would shoot medicine. Yeah. To make them not be bad anymore. Honest, Mom!

Left grip is 46 pounds (46, 45, 43), right grip is 97 pounds (97, 96, 89), left leg balance is 3.67 seconds, and inhale volume is 4650 mL. Each of these measurements were done in the afternoon, rather than the morning when I usually do them. Earlier I spent most of the day walking with my son. My legs may be 'used up,' which would account for the reduced balance duration.


Sunday, March 27, 2005

Three strikes

Left grip is 45 pounds (44, 45, 44), right grip is 95 pounds (92, 92, 95), left leg balance is 7.4 seconds, and inhale volume is 4700 mL.

My standard greeting to other players is:

I voted for Kerry and am playing from California. You?

A fair number of American players who respond regarding Kerry say they voted for Bush. One hundred percent of foreigners who respond say they would have supported Kerry, or else they say something negative about Bush. Every now and then, people from the UK say that Bush and Blair are equally awful. In that case, I always offer to trade. No one has ever accepted that offer.

In this game, I don't know if you can tell, but I was being dominated, and about to lose to white. He hadn't said anything in response to my standard greeting, then during the first situation shown here, he wrote something:

nobody's perfect, but that's two strikes against you already.

The two strike being Kerry and California.

When I moved up the knight to threaten his bishop, he covered with the rook. That surprised me, because I expected him to do something better, like retreat the bishop to the back row.

I think he was confident about tearing up my pawn line on the right side of the board and hassling my king with his queen. I know I would have been. But he made a mistake in thinking that my ploy with the knight would not sway the ultimate outcome of the game. I took the bishop, which looked like just a trade to him, I guess. He was probably thinking it still didn't matter.

He recovered the lost bishop, and removed the check, by taking the knight.

Then my bishop took his knight, threatening to take his rook. In response, the better move would have been to retreat the rook to the back rank.

But for some reason, probably still lulled by his dominance on the right side of the board, white recovered the lost knight by taking the bishop.

Taking the bishop was unwise, because it allowed my queen to take the pawn and threaten the rook. Things are still not untenable for white, but he should have stood his ground with the king and moved the rook to safety, one square to the right, to prevent my queen from getting to the back rank.

Instead, perhaps now reacting without thinking, or still feeling confident, he went for what may have seemed like safety.

I had already typed in my quip, and I sent it just before the mate:

Three strikes and you're out.

White's alias is Phileo. He was rated 1264 at the time of this game, and I was rated 1044. When I used 'fi' to finger him just now, his account notes said:

1: Jesus
2: is
3: The
4: Lord
5: !!!!!

The Kerry supporter from California won the game. It's not such a big deal, I've beaten people in the 1300s and even 1400s before. But it was sweet that he told me about the two strikes against me right before my three strikes against him: bishop, knight, pawn, followed by mate.

Saturday, March 26, 2005


Two nights ago I had the night numbness in my hands. I woke up on my back and I have the impression that there was nothing odd about the positions of, or pressures on, my arms. Last night, too.

I've been taking 100 mg of DHEA for a while now (on the theory that maybe it results in more muscles), and I notice that my whiskers seem thicker (in the left upper lip, for example), and are growing in more places than before, for example, in a wider range on the neck. But ... the hair on my head is not falling out, and seems as thick and wall-to-wall as ever.

I look forward to observing the effects of the next round of ceftriaxone. Will my metrics continue to slide? Will they pick up? My bets are on continued left-side slippage, or perhaps hitting a plateau, while the right side may get a tad stronger. Expect modest improvements in lung capacity and left-leg balance duration.

I could be wrong. It's weird how, even though I am the lab rat, and this is a battle for my life, my response is: "Oh goody! An experiment!"

Left grip is 45 pounds (44, 44.5, 45), right grip is 105.5 pounds (97, 105.5, 102), left leg balance is 8.18 seconds, and inhale volume is 4750 mL.


Friday, March 25, 2005

Blog book?

So I was thinking I'd like to read back through my own blog, and review the changes and adjustments. For instance, I want to know when it was that I was still running up stairs two at a time. But, I don't want to read it on the computer screen. So I was thinking of loading it all into a book on No way I'm going to proofread it, though. The forward would say that this was intended as a blog archive, and blogs often contain spelling mistakes and other markers of their immediacy, that the book had not been proofed, and the reader should celebrate and enjoy any such flaws. Harumph. One hassle would be flipping all the entries into the other order. When I archive them to my computer, I just grab a swath of days, usually about a week, and paste them into the word processor file. This means that the most recent ones are at the top. I suppose I could tell the reader to read the book from the back to the front?

Left grip is 45 pounds (42, 40, 45), right grip is 102 pounds (95, 98, 102), left leg balance is 9.92 seconds, and inhale volume is 4750 mL.


Thursday, March 24, 2005

Me too

My lovely wife is taking 500 mg of amoxycillin thrice daily for 10 days, to treat her strep throat. At midday yesterday I started doing the same, using my supply of penicillin, and I plan to keep it up until the 29th, when I start the ceftriaxone.

The kids slept well last night. My gait these days (for the last several weeks or months) is visibly disabled at all times. Not in the herkey-jerky sense, more like, someone stiffly getting up out of a chair they've been in for hours. But I think the kids are used to it, or if they notice it, consider it unalarming.

Left grip is 46 pounds (42, 46, 42), right grip is 95 pounds (94, 95, 95), left leg balance is 5.94 seconds, and inhale volume is 4550 mL.

The home nursing people confirmed that they received the doctor's prescription, and will have someone call me Monday to confirm the Tuesday appointment at 1 PM. I am also supposed to see my doctor Tuesday, in the morning, which is why I pushed the infusion to the afternoon.

Wednesday, March 23, 2005

Namenda effect?

For a couple of months now I have always noted a leg tremor in the shower when I lifted my left leg by placing the foot on the rim of the tub (to soap it, and later dry it). For the past four days I have noticed that the tremor is either absent or is much easier to will to a stop. This is basically coterminous with the Namenda, so I am prepared to credit it. Wally Jr. has apparently had success with using it to lessen morning leg spasticity.

Simultaneously, I have seen the rise of lots of left thumb twitching. Also, my chin muscles twitch. Not my jaw, my chin.

Left grip is 42 pounds (39, 40, 42), right grip is 97 pounds (95, 95, 97), left leg balance is 9.8 seconds, and inhale volume is 4500 mL.

My lovely wife went to the doctor this morning, and sure enough she has strep throat. I kissed her lightly on the lips as she was leaving. I plan on not getting it. Strep sounds like the bacteria streptococci to me. I'll ask her what her pescription is and then maybe do five more days of penicillin?

I went to Goodwill and dropped off five bags of baby toys that had been cluttering my closet for many a moon. I also brought back 10 99-cent books, some of which I have read, and bought of out sheer respect, others, not:

Angela's Ashes by Frank McCourt
The Establishment by Howard Fast
Jurassic Park by Michael Crichton
The Color Purple by Alice Walker
The Hite Report by Shere Hite
Ragtime by E.L. Doctorow
The White Album by Joan Didion
I Know Why The Caged Bird SIngs by Maya Angelou
Welcome To The Monkey House by Kurt Vonnegut Jr.
Buying Time by Joe Haldeman

Am I going to read these all? Not. I just like having them.

Tuesday, March 22, 2005


Yesterday I sent this email to my neurologist:

My last dose of penicillin was the night of March 18. I had no adverse reactions of the typical sort, and even my bowel function remained fine (which I credit to the probiotics). But once we switched to a four-gram daily bolus, I felt somewhat tired in the following days. As usual, it's hard to place the blame, because we were also staying up too late and being wakened by our kids. But I list the penicillin as a suspect.

I retain the penicillin pills, in case we want to try the approach again. But I think it will be more useful once we have access to that Fishman paper on penicillin dosing and the CSF, that you have mentioned.

Now I'd like your opinion on whether it would be advisable to try five days of ceftriaxone at two (2) grams per day. I want to do this. I'd like to start on Tuesday 3/29. I think it's the smart thing to do. But I'm no doctor, so I seek your advice.

My grip strength is back down to the 44 pounds it was at after after the dramatic improvement of the first round of cextriaxone. I am very curious to see what the effect if another round would be.

Left grip is 45 pounds (41, 45, 45), right grip is 98 pounds (98, 95, 95), left leg balance is 10.56 seconds, and inhale volume is TK mL.

Monday, March 21, 2005

Events in the garage

The garage is a workshop and project zone, and I am pleased to announce that Operation Cheapskate has concluded with success. You may recall all those five-gallon buckets of rubble I had from the sheerwall project (I had to tear out the old drywall, for one thing). Anyway, yesterday I put the last bucketful into the house garbage bin, in a tidy plastic garbage bag like all the others. It all got taken to the dump, for free.

Now I just have to get rid of all the other stuff in the garage.

I also painted more of the custom kitchen cabinet the carpenter made for us. I really should have paid her to paint it. I had no idea that almost a year later it would still be in the garage. But now the first coat is finished. It needs more coats.

Left grip is 44 pounds (42, 44, 43), right grip is 95 pounds (95, 95, 95), left leg balance is 13.2 seconds, and inhale volume is 4600 mL.


Sunday, March 20, 2005


I started taking the creatine again yesterday. I guess I went over a month without it. Maybe not a dumb move, but dumb not to be more actively conscious of it.

So that's the end of Operation Bolus. Enemy units remain in control of the heights.

Left grip is 43 pounds (41, 42, 43), right grip is 97 pounds (90, 97, 94), left leg balance is 11.43 seconds, and inhale volume is 4700 mL. The front door has become harder to open with my left hand. I don't know if that's just because I know the hand is weaker, or what. But when it was stronger, it was easier. Maybe I should stop publicly doubting whether my experience is shaded by my perceptions, and just write my experience.


Saturday, March 19, 2005

P19: Lethargic

I have been feeling notably lethargic during the period of the New Bolus Plan (four grams per day, once dose only). But I don't know if that's because we've stayed up too late or what. But I did get enough sleep last night, so let's see what happens today.

It is useful to have a clock in the room that makes a small audible click each second, when you are timing things. When I used to deal with software that was having performance problems, I could just count the clicks to know how long the problem operation took. Now when balancing on my legs, I still use the stopwatch, but I also listen to the clicks.

Left grip is 45 pounds (44, 45, 44), right grip is 97 pounds (93, 97, 94), left leg balance is 8.47 seconds, and inhale volume is 4700 mL.

I got seven hours of sleep last night, which should be enough for me. Yet during the mid-day I felt a tad drowsy. I've decided to stop the daily penicillin. There'll be no dose tonight. I'm interested to find out how I feel tomorrow. I can always resume with the penicillin, as I have big bottles of it.

Friday, March 18, 2005

P18: Namenda commence

I started the Namenda (memantine) today. So far, the dementia hasn't stopped. (That's a joke. I've had a healthy dementia my entire life. And how could a pill I took for the first time today be expected to reverse a pathological dementia? That's also part of the joke.).

Left grip is 48 pounds (37, 39, 48), right grip is 95 pounds (90, 95, 94), left leg balance is 5.17 seconds, and inhale volume is 4700 mL. Those initial low scores with the left hand scared me. I'm leery of the trend. I'll wait a bit to let the new bolus effect of the penicillin hit me, and see if the Namenda can rock, before asking the bartender for another ceftriaxone.

You may have seen that email going around...



2008 Election Issue!!


As compelling as this argument is, it's based on a false premise. describes the errors of fact:

It was true prior to 1984 that Congressmen did not pay into the Social Security fund because they participated in a separate program for civil servants (the Civil Service Retirement System, or CSRS), but that program was closed to government employees hired after 1983.

If it were still true, I hope you'd be outraged.

Well guess what? Congress does still have a special deal when it comes to health care. In contrast, those of us with ALS scramble after dollars to pay for insurance after we lose our jobs and then lose the insurance (after the insurer wriggles out through the limits built into COBRA, or after we can no longer afford to pay the whole cost of COBRA). And some of us can't afford the drugs our doctors say we need. Ceftriaxone being one example.

The email about Social Security is emotionally powerful, which is why Congress corrected that injustice. Next thing on the table in this country should be health care inequality, and fixing it, so that sick people get the care they need, without having to be rich as a precondition.

Thursday, March 17, 2005

P17: Basic Instinct

Left grip is 46 pounds (40, 42, 46), right grip is 98 pounds (98, 97, 94), left leg balance is 6.4 seconds, and inhale volume is 4600 mL. I am concerened about this downward trend in the left grip.

My lovely wife and I watched Basic Instinct for the first time last night, on DVD. I know that I previously wrote that she looks like a cross between Princess Dianna and Farrah Fawcett, but she's also frighteningly similar to Sharon Stone. Except that my lovely wife has the stronger nose. I don't know about you, but for me, a beautiful woman is notable, but a beautiful woman with a strong nose is rapturous.

Oh yeah, the hottie in Basic Instinct was Jeanne Tripplehorn.

Wednesday, March 16, 2005

P16: Dry

I have decided to broaden my range of supplements. Everyone, a big round of applause please for Acetyl-L-Carnitine, Alpha Lipoic Acid, and Sublingual B-12 dots!

Two nights ago, and last nighht as well, my boy kept dry through the night in his underwear (and pajamas). It was his first time without a pullup diaper. He used to wet the pullup every time. He was apprehensive to go without it. But after his success, he declared he would sleep in underwear every night. I think that the pullup was the sort of crutch that enabled him to keep peeing at night.

Here's what the half-life behavior of four grams oral penicillin looks like as compared to one gram of IV ceftriaxone. I am now taking the four grams once a day only, all at the same time. We're going for the bolus effect. I am curious to know if a million units of penicillin is the same as a gram. Because I've heard of people getting, for example, 20 million units of IV penicillin to treat neurosyphillis.

Left grip is 48 pounds (45, 48, 47), right grip is 98 pounds (95, 93, 98), left leg balance is 11.72 seconds, and inhale volume is 4750 mL. Very glad about that last metric.

Tuesday, March 15, 2005

P15: Angry?

If you follow the ALS email group, you know that there was a story about a woman. Forgive me if I mishandle some of the details, but I think she got married in 2003, was pregnant when they told her she had ALS, then died recently at the age of 39, with her one-year-old son attending her memorial service. You know this is not only unfair, it is wrong. I know how extremely fortunate I am to still be tucking my kids in to bed, losing over the course of the last year as much functionality as that poor woman must have lost in a week. My kids rode horsey on my back last night. Lucky. Perspective.

The ALS clinic finally mailed me my blood work results from well nigh a month ago. The test for very long chain fatty acids (the one that would definitively give me a different, or perhaps just an added diagnosis) ... is still pending. They're going to mail that to the ALS clinic. And then we can start the comedy of me trying to get the results from the clinic all over again.

But my cholesterol picture continues to improve. And my bilirubin, while high due to my Gilbert's Syndrome, was down almost a half from when I was taking riluzole.

The abnormals are bolded:

Triglycerides: 127 mg/dL, normal: 0-149
Cholesterol 242 mg/dL, normal: 100-199
---HDL (high-density, the "good" cholesterol) 66 mg/dL, normal: 40-59
---LDL (low-density, the "bad" cholesterol) 151 mg/dL, normal: 0-99
---VLDL (very low density, "very bad") 25 mg/dL, normal: 5-40
Bilirubin 2.7 mg/dL, normal: 0.1-1.2
Glucose 82 mg/dL, normal: 65-99
Urea Nitrogen ("BUN?") 19 mg/dL, normal 5-26
Creatinine 0.9 mg/dL, normal 0.5-1.5
BUN/Creatinine ratio: 21, normal: 8-27
Calcium 10.3 mg/dL, normal 8.5-10.6
Sodium 144 mmol/L, normal 135-148
Potassium 5.1 mmol/L, normal 3.5-5.3
CO2 33 mmol/L, normal 20-32
Chlorine 102 mmol/L, normal 96-109
Protien, total 7.5 g/dL, normal 6.0-8.5
Globulin 2.7 g/dL, normal 1.5.-4.5
A/G Ratio 1.7, normal 1.1-2.5
Alkalin Phosphotase 41 IU/L, normal 25-150
AST (SGOT) 24 IU/L, normal 0-40
ALT (SGPT) 32 IU/L, normal 0-40

I saw the doc today. He agreed with my reluctance to take Lexapro to control inappropriate laughing. My lovely wife says that the kids don't seem to mind.

Left grip is 50 pounds (50, 45, 47), right grip is 95 pounds (95, 92, 85), left leg balance is 7.48 seconds, and inhale volume is 4750 mL. On his dynamometer I scored a record 108 with the right hand and an unimpressive 41 with the left (compared to the 44 after the ceftriaxone). I weigh 137 pounds with no shoes, so my weight is maintaining or gaining.

We agreed that I would take the 4 grams of penicillin all at once, but only once a day. I'll start that tonight.

He gave me a free sample of Namenda, which is used in Alzheimer's as a glutamate antagonist. It may help with ALS. I am checking with the ALS email group to see if anyone has tried it.

Apparently the radiologist who requested the second MRI did see it, and responded that my situation seemed "improved" (compared to the MRI of a year ago) due to "more subtle" evidence of demyelenation.

The doc also thinks my speech is improved, though I had to tell him I think it is worse, at least in the sense of my feeling 'lazy tongue' much more commonly throughout the day.

He validated the possible legitimacy of my theory that the ceftriaxone already "cleaned the room" and now the penicillin is trying to clean it again, hence no dramatic improvement. But I wonder why the right hand is doing so well. I have no objection to the breathing score improving.

In the last few weeks I have enjoyed scratching my back about once a day with a comb, though I didn't use to think of it, ever. I mention this only in case it has some relevance to my condition or the drugs I am taking. My lovely wife inspected my back and didn't find a rash or hives or anything, though there may have been a small bug bite.

Monday, March 14, 2005

P14: I know why the caged bird stinks

Left grip is 47 pounds (45, 42, 47), right grip is 104 pounds (87, 100, 104), left leg balance is 6.65 seconds, and inhale volume is 4650 mL. This is a bizarre trend, with the right grip improving while the left grip declines or wanders. I am glad that the inhale volume stays strong.

No disrespect is intended for Maya Angelou and her excellent works. But sometimes it is fun to play with famous titles. I also like "I know why the caged bird drinks" and "I know why the caged bird sins." But "stinks" seems better to me because it implies a whole range of unsavory conditions and inadmirable responses. "Drinks" and "sins" are too specific.

Sunday, March 13, 2005

P13: Helpers

The folks at ALS TDF did a write-up on the Rothstein study and highlighted something I missed, or didn't take note of:

"Ceftriaxone was able to raise the amount of transporter protein in the brains of rats for three months, the maximum duration of administration tested."

My son, five, and daughter, two, helped me sink three of the stepping stones yesterday, while I did the other five. They did a surprisingly good job, putting the stones in level and flush with the ground. I was impressed. And now the job is done. The boy kept saying how fun it was, and I can see why. It's rare that a kid that young gets to contribute in an independent, equal way to a serious project that utilizes skills they have already mastered. I mean, what is a five-year-old about, if not digging holes? Even the girl was able to help, and the boy was a really good at sharing the task with her.

Good job, kids.

Left grip is 44 pounds (41, 41, 44), right grip is 96 pounds (90, 94, 96), left leg balance is 21.66 seconds (this is a highly variable skill that improves with mere contemplation and improved technique), while inhale volume is 4600 mL. I think that the dramatically lower grip strength is a temporary effect of a nightmare last night. The thing to do will be to see if it persists.

Saturday, March 12, 2005

P12: Tactics

Left grip is 47 pounds (42, 47, 45), right grip is 97 pounds (92, 95, 97), left leg balance is 6.58 seconds, and inhale volume is 4600 mL.

Here's what I do: I take the antibiotic and most of my other supplement pills, then I take a shower, and then I take the probiotics (the good bacteria). My hope is that the killer wave that sweeps through my guts is then followed by a friendly wave. Then again, I wouldn't be surprised if my gut now sports good bacteria that are resistant to antibiotics.

Yesterday my son and I picked out some stepping stones for the dirt strip next to the driveway. There are twelve, and as I drove us home I played math games with him like "If there were twelve stones in two stacks of six in the cart, and I put them in three equal stacks in the trunk, how many stones are in each stack?" By the way, when you have an ALS-addled tongue, the forgoing is really hard to say. Then he helped me pick up the old, crumbling "stones" they used as decoration when selling the house to us. I laid out the new ones. Then (and here is the impressive part), later in the afternoon, I dug pits for four of them and sunk them in the hard wet black clay (so that some dufus with ALS would not trip on them). This was hard work. I was conscious, during the whole job, that I did have ALS and would have to be careful about this or that motion. But the thing that struck me, when I was done, was how little the ALS got in my way of doing this job. I know that this is subjective, and I'm glad to have the metrics to shade it with some reality, but for the past few weeks I have felt strong, able, and more hopeful and confident about the future than usual. Almost smug.

By the way, on February 20th I stopped taking creatine (as part of my three-weeks-on, one-week-off rotation. I have forgotten to resume it. Now I am kind of unsure whether I should. I mean, it does stress the liver, right? Maybe this good energy I am feeling is because my liver is happier now?

Friday, March 11, 2005

P11: Water method man

Left grip is 50 pounds (47, 50, 47), right grip is 95 pounds (94, 95, 91), left leg balance is 10.13 seconds, and inhale volume is 4600 mL.

We get water delivered to our house in these five-gallon jugs. I don't think it's necessary, since we have some of the cleanest drinking water in the country, unlike the broth of chemicals and sewage that you drink. Anyway, the jugs weigh 40 pounds, and it's always been my job to bring them into the front hall. When my son weighed less than the jugs do, he made it his job to lower them onto their sides and roll them into the kitchen. As I have previously noted, I am basically a walking, plucked chicken who talks, programs computers, and generates an intense kavorka field,1 but not a burly strongman. So waaaay aforn I had ALS, I rarely carried these jugs into the house one-handed. Usually I used two hands. I recall doing it one-handed once, back then, and being surprised that I could. Anyway, I fell down onto the carpet yesterday while trying to do my inhale test, in that comical way in which you don't get hurt. And later I tripped on the rug and spilled cereal on it. I have been working on this notion that you can get clumsier and more disabled even as your muscle strength increases. I mean, look at my chart: My left grip strength is way up from when it was at 33 pounds, and yet I'm falling all over myself like a one-man Three Stooges2 episode. I believe that the one-legged balance test will ultimately show whether I have just gotten stronger, or whether I have gotten more functional. After all, there is a lot that goes on amongst the brain, nerves, and muscles when it comes to balancing. If we see a marked improvement in balance, I will be prepared to say that this beta-Lactam stuff is working. (OK Mike, or it could be the glyconutrients. Or the acupuncture.) Yet, the one-legged balance metric I have been doing is tricky, because it seems that one can benefit from practice; I think my early, lower scores were simply due to unfamiliarity. What all this leads up to is that I brought the water jugs into the house yesterday, and made a point of seeing if I could do it one-handed, with the right hand. Indeed I could. But the knees were wobbly, and so I let discretion be the better part of valor, and brought two of them in using a process of hops. I made the jug hop, I didn't hop. But I had carried the first one up three steps and across a distance of over 12 feet, using just one hand. Huzzah.

Seinfeld reference. What a great TV show that was!

No, I never really got into the Stooges. Like I said, I prefer Seinfeld. And no doubt Kramer was an homage.

Thursday, March 10, 2005

P10: Little Red Corvette

Left grip is 47 pounds (45, 45, 47), right grip is 95 pounds (95, 93, 92), left leg balance is 12.04 seconds, and inhale volume is 4550 mL.

I went to buy some Prince on iTunes and found that many of his main hits were not there. It appears, if I may guess, that certain artists only offer their B-list songs on iTunes, preferring, or perhaps constrained by their labels, not to offer the ones people will pay money for on greatest-hits CDs.

I saw the acupuncturist yesterday. She said my liver pulse is much improved. I wonder what a blood test would say. Speaking of which, I've left numerous voice mails over the past week, trying to obtain a copy of my recent blood test results from the ALS clinic. I finally got someone to say they would do it. She called later and said they couldn't find it, and want to know what lab I went to. That clinic is so messed up.

The doctor agreed to increase the prescription to two grams of oral penicillin twice a day. I started the new dosage last night.

Wednesday, March 09, 2005

P9: Seven of Nine

Left grip is 48 pounds (44, 48, 47), right is 98 pounds (91, 98, 95), inhale is 4500 mL, and left leg balance duration is 6.54 seconds.

I'm pleased to report that I now am in email contact, via this blog, with nine people who have ALS. Of course, anytime I want to I can be in touch with dozens, through the ALS Yahoo group, and braintalk, and ALS TDF. But for some reason I consider the blog contacts to be friends, people I can count on.

Tuesday, March 08, 2005

P8: It's just not healthy

Left grip is 51 pounds (48, 47, 51), right grip 97 pounds (94, 97, 96), inhale is 4500 mL, and left leg balance is 9.5 seconds.

My speech continues to grow more awkward. I often slow down in order to be understood. There is a test script I use to assess myself. It comes from the Grandmaster Flash song "The Message:"

My brother’s doing fast on my mother’s t.v.
Says she watches to much, is just not healthy
All my Children in the daytime, Dallas at night
Can’t even see the game or the Sugar Ray fight

That's just so clever. And not so easy to say when ALS is impeding your tongue.

Monday, March 07, 2005

P7: Prat fall

Today's left grip ties the record at 52 pounds (52, 50, 49), right grip is 96 pounds (96, 92, 94), and inhale remains at 4500 mL. Right foot balance is 30+ seconds as usual, and left foot is 8.63. This metric is highly variable, so it will be a long time before I have enough data worth showing in a chart.

I feel that the one gram of oral penicillin twice daily is helping, but I have asked the doctor to increase it to two grams twice daily. We'll see what he says. When I started the ceftriaxone, the benefit was massive and sudden. Given, a lot of my nerve cells are dead, and in the practical near term, I don't expect the beta-Lactams to bring me back to normal strength. My nerve cells are probably still pretty much cleaned of bad glutamate from the ceftriaxone, and I would have seen the biggest increase then, in my first use of a beta-Lactam. So it would be unrealistic to keep expecting strength increases one after another until I can win an Olympic event. But despite all that valid reasoning, I do expect modest strength increases (which I have seen on the right side), and one other objective I have is for the fasciculation to reduce, or stop. After all, if we remove the stress (excess glutamate) from my motor neurons, ought not the twitching stop? This assumes a glutamate-only model of ALS, I know.

I was standing and talking with a neighbor yesterday when I started to take a step, and the toe of my right shoe caught on a recessed sprinkler head. I fell forward, full length onto the grass, but was not hurt, except for the tip of my toe which stung a bit. When I got home I saw the the forward edge of the toenail was cracked, laterally across the foot, not lengthwise towards the cuticle. There was a little blood but no flow. I put some antibiotic and a Band-Aid on it and took two ibuprofen and an Excedrin.

I cannot say for sure whether this fall was caused by ALS, or was just because I am a clumsy dufus.

I must have twisted my neck in the fall because after napping yesterday afternoon I woke up with a crimp in the left side. I limped around (more than usual) that afternoon and evening. This morning I am still limping from it, but it appears to be healing.

I also have a notable increase in muscle twitching. I think it is the soma responding to the fall. Before the fall I was under the impression that the twitching had reduced somewhat, though it wasn't certain enough to blog about.

Sunday, March 06, 2005

P6: Spring chickens

Today's left grip is 51 pounds (50.5, 50.5, 51), right grip 99 pounds (88, 99, 94) -- a record since we began the ceftriaxone on 2/2/05, and inhale is 4500 mL. Maybe the new double dose of penicillin is having an effect, maybe it's because I am getting better sleep, and maybe this is just a normal fluctuation that would have happened anyway. I have to remind myself that if I am still able to walk four years from now, and I can't prove why, that's a good outcome.

My mom is almost 80, and when I had her use the dynamometer yesterday, her left grip was 42 pounds and her right grip 40 pounds. My dad is almost 83 and his left grip was 40. We didn't test his right grip because he's recently had an operation on that arm for carpal tunnel syndrome. It's still swollen up. He was lamenting that he used to be able to do 25 pushups with no problem, but that the other day he could only do three. Mostly because of the hand. Used-to-be means three years ago before he had a heart attack, had angioplasty, got cancer, was operated on to remove the tumor, and had radiation and chemotherapy. Then came the kidney stone operation, in which they had to go in through his back instead of the front, because the cancer scar was still healing on the front.

Sounds like fun, huh?

I told him that the other day I could do zero pushups. I didn't tell them that until recently my grip strength was lower than theirs.

Last night our daughter slept all night and our son only woke us up once at 4:50 a.m. He used to insist on being taken back to bed, but now he's willing to go on his own after a few exchanges.

Saturday, March 05, 2005

P5: The Absolute Worst Thing

Left grip is 49 pounds (49, 49, 45), right grip 90 pounds (90, 90, 85) and inhale volume 4500 mL. Last night our daughter did not wake us up (hooray!), and the son did so only briefly at 5:25 a.m.

I was trying to think of a tactful way, in this family-oriented blog, to mention the encouraging email I got from a guy diagnosed with ALS, who says that the side-effects of Lexapro are entertaining.

But then ... I saw a couple of posts in the online ALS discussion group about something very important getting ... smaller as a result of ALS. This is exactly and precisely unwelcome news!!! I don't know if it is true, but I'm going to create a metric, a very private, confidential metric to track it. I hope that this is all just a silly little rumor.

Or that if it happens, it happens very late in the game. In the case that stood out in my mind, the caregiver wife said her husband was at the immobile, basically non-responsive stage when she noticed, because she puts a condom catheter on him to drain urine. When I used to be an attendant to the disabled when I was a student, this was one of my duties. Another person posting to the group wrote that it may be a result of the abdominal wall muscles atrophying.

Anyway, let us repeat the mantra: Late in the game, if at all. Late in the game, if at all.

Per the discussion with my neurologist, I took one full gram of penicillin last night, and another this morning. That's the plan going forward, 1 gram q12.

According to some helpful information from a reader, 40% of oral penicillin is destroyed in the stomach, and the remaining has a half-life of 36 minutes, while IV ceftriaxone has a half life of six to nine hours. In the graph, I have assumed seven hours for ceftriaxone. If the information from the reader is correct, then the dose persisting in the body is the area under the curve. This says nothing about what actually gets into the brain and spinal fluid.

Friday, March 04, 2005

P4: Genius

Left grip is 46 pounds (45, 44, 46) right grip 90 pounds (90, 90, 89) and inhale is 4490 mL. Pushups were zero (I went down but could not come up). I'm not liking this trend, although I admit it is too early to tell.

My daughter has been waking us up at awful times in the night for several days now. That could be the reason for my declining metrics. Not sure.

The night before last, I took about three tablespoons of mineral oil to foil the plans of the Concreting Evil. I think it helped. The probiotics have kept everything smooth since I started taking them, but use of antibiotics tends to stopper me up, so I may need to use more mineral oil. Eternal vigilence is the price of liberty. I'm just glad there was no rush of monsoon after I started the penicillin, and no immediate full concreting.

My mother recently returned to me a bunch of papers and homework assignments from junior high school and high school that she saved for the sociopathic drawings that were on them. One of the quiz papers had an answer, marked as correct, that said that the I.Q. level of 140 and above is considered to be in the "genius" range. That seems surprisingly low to me, and it either indicates that I should not take my information from a high-school sophomore, or that "genius" is a more common, pedestrian word than we treat it as. We treat is as "super-genius" and expect a genius to be like Einstein or Joni Mitchell, when perhaps it just means smart person.

I have sent the doc an email:

It occurs to me that in order to achieve the bolus effect of overwhelming the blood-brain barrier, perhaps I should take both the 500 mg capsules, only once a day. After all, we just want to get the penicillin into the brain for that flushing effect. It's not as though we're in an infection regime where we want to maintain a stable dosage across the day.

What do you think?

2:12 PM: I just spoke to my neurologist and we are going to increase the dosage to
1 gram twice daily (total daily dose of 2 grams). I'll start with tonight's dose.

Thursday, March 03, 2005

P3: Line up to die

(Ali Abu Shish/Reuters).
I've been having more frequent and notable numbess in my arms at night, not my legs. It's as though the limb "falls asleep" for lack of blood, and that is part of it, I'm sure, but it also feels different from that. I think it has to do with the ALS.

I am pleased to report that the Concreting Evil has made it's play, but the forces of good won out.

Today's left grip is 48 pounds (44, 46, 48), right grip is 94 pounds (94, 90, 92), and inhale volume 4500 mL. Overall, a down-tick day, but there are bound to be fluctuations.

A few days ago a car-bomb exploded in Iraq, killing over 100 potential recruits lining up to apply for jobs in the Iraqi National Guard. It's not the first time a bunch of ING applicants have been killed in line. It has happened several times. One hopes that the American effort to help Iraq is competent. But this pattern of incidents argues instead that our efforts, and the efforts of the Iraqi people, are wasted.

The solution is so simple: Don't let ING applicants line up. That's a basic infantry technique, you've heard the Sarge yell it in movies: "Don't bunch up!"

Accept applicants 24 hours a day, but only a few at a time, or by appointment only, and don't allow them to line up to obtain appointments. Maintain a perimeter and break up clumps of people by force if necessary.

Simple. And yet apparently beyond the grasp of the leaders in Washington.

Yes, Iraq is supposedly a sovereign nation now, and theoretically can administer this process however they like, even if it means periodic bloodshed. However, we allowed this to happen when Iraq was our ward, and as their supposed allies and advisors one would think we would fulfill that role, now, in this regard.

Wednesday, March 02, 2005

P2: Glutamine and (gasp!) glutamic acid

Left grip is at a record 52 pounds (46, 49, 52), right grip ties the record of 96 pounds (95, 94, 96), and inhale is back up to 4600 mL, while left one-legged balance is at 6.73 seconds.

It rained yesterday afternoon and the roof patch appears to be working.

Our daughter woke us up around 4:30 a.m this morning and there has been no peace since. So this entry.

My neurologist said that I should avoid protein supplements that contain glutamine. The one I was taking has it. Glutamine, by it's very name, appears related to glutamate, and you will recall that when I was taking a protein powder that contained glutamate, I became so messed up that I didn't feel like walking.

Here's what I found in quick web search using the keywords 'glutamate glutamine toxicity'

This is an interesting primer on what the brain is doing with these compounds, but I cut it off after the key point, which indicates that glutamine CAN turn into glutamate:

"In order for the brain to use the common amino acid glutamate as a neurotransmitter, it has been necessary to introduce a series of innovations that greatly restrict the availability of glutamate, so that it cannot degrade the signal-to-noise ratio of glutamatergic neurons. The most far-reaching innovations have been: i) to exclude the brain from access to glutamate in the systemic circulation by the blood-brain barrier, thereby making the brain autonomous in the production and disposal of glutamate; ii) to surround glutamatergic synapses with glial cells and endow these cells with much more powerful glutamate uptake carriers than the neurons themselves, so that most released transmitter glutamate is rapidly inactivated by uptake in glial cells; iii) to restrict to glial cells a key enzyme (glutamine synthetase) that is involved in the return of accumulated glutamate to neurons by amidation to glutamine, which has no transmitter activity, and can be safely released to the extracellular space, returned to neurons and deaminated to glutamate..."

And this is from some commercial supplement company:

"Even though glutamine supplementation is indeed likely to raise glutamate levels in the brain..."

That's enough for me, and I'm willing to avoid glutamine. No more of that protein powder for me. I'll keep my weight up by using fats and carbohydrates.

Glutamic acid!!!

Oh man, this is worse than I thought! I response to Liz's comment, I looked at the ingredients on my protein powder. It does not contain glutamine, as I had thought. But it contains glutamic acid, 4990 mg per serving. Over a year ago when I was diagnosed, I recall seeing that and thinking "Sure sounds a lot like glutamate, but it's an acid, and I bet it's harmless, the way you still have the right to free speech at work."

But holy smokes, Batman, it's the same exact thing! And I've been poisoning myself with it since diagnosis!

From Wikipedia, the free encyclopedia:
Glutamic acid or glutamate is one of the 20 most common natural amino acids. As its name indicates, it is acidic, with a carboxylic acid component to its side chain.

Glutamic acid is critical for proper cell function, but it is not considered an essential nutrient in humans because the body can manufacture it from simpler compounds.

In addition to being one of the building blocks in protein synthesis, it is the most widespread neurotransmitter in brain function, as an excitatory neurotransmitter and as a precursor for the synthesis of GABA in GABAergic neurons. Glutamate activates both ionotropic and metabotropic glutamate receptors. The ionotropic ones being non-NMDA (AMPA and kainate) and NMDA receptors. Free glutamic acid cannot cross the blood-brain barrier in appreciable quantities; instead it is converted into L-glutamine, which the brain uses for fuel and protein synthesis.

It is conjectured that glutamate is involved in cognitive functions like learning and memory in the brain, though excessive amounts may cause neuronal damage associated in diseases like amyotrophic lateral sclerosis, lathyrism, and Alzheimer's disease. Also, the drug phencyclidine (more commonly known as PCP) both stimulates NMDA receptors and, in high enough doses, also causes behavior reminiscent of schizophrenia. However, this may be a total coincidence (especially since PCP trips are characterized by visual hallucinations, whereas schizophrenics more often hear voices).

The sodium salt of glutamic acid, monosodium glutamate (MSG) is responsible for one of the five basic tastes of the human sense of taste (umami), and MSG is extensively used as a food additive.

The way I read this, most of it did not get into my brain. Although I wonder, why did the whey protein powder that listed glutamate as an ingredient have me crawling on my back? Maybe I really did have the flu? I will never use a protein powder again! I've been staying away from MSG, and the rest of you should too.

Tuesday, March 01, 2005

P1: Allergy schmallergy

Upon learning about Operation Bolus, my lovely wife was concerned that I might develop an allergy to penicillin, and possibly by extension all beta-Lactam antibiotics. Someone in her family developed an allergy to penicillin. This would be bad if it happened to me, as I want to continue to use beta-Lactams to increase my GLT-1 expression. The neurologist didn't feel he had enough information to render an opinion on the issue, so I called the GP. He's on vacation, but his excellent partner doctor said that it's a rare thing, and people often take penicillin for a long time without becoming allergic. She said it's more often the case that you are already allergic, and much less common that exposure makes you allergic.

I decided to start taking the penicillin today rather than start on the 8th. Things are getting too slurry for me in the mouth region to wait any longer. I took three of the probiotics capsules last night as prep. Let's hope that keeps the concreting Evil One at bay. I credit the probiotics with keeping everything flowing normally during the use of the ceftriaxone. But then I took three capsules twice a day for the duration. This time I plan to scale it back to one capsule twice a day on the second day.

And that means we are at the end of my first ceftriaxone experience. I think it went well, and had surprising benefits, which, in my particular body, have persisted. Since the experiment is over and I'm moving on to the next one, I will cease using the "D+n" notation in my blog posts. Thanks, all, for watching this lab rat strut his stuff, and please wish me luck in the new round. We can consider today's metrics of left grip 50 pounds (47, 46, 50) and right grip of 96 pound (90, 96, 96) and inhale of 4550 mL to be the final results of the ceftriaxone experience, since I did today's metrics only about two and a half hours after taking the first penicillin.

I picked up the pills yesterday, 20 at 500 mg. At two per day that will last 10 days, not 20 as I had previously said. The uninsured cost would be $13.86. Nice and cheap. Even if I were on Medicare I could afford that. Now let's see if they work.

Oh, and here's the picture of me naked. My son drew it in while on the trip, then gave it to me as a gift when they got back. He proudly said, "Here's a picture of you naked, meeting us at the train station." Kids are weird.

I didn't know my butt was that big.

10;40 a.m.: I became so concerned by the combination of amanda's warning and a twinge I felt in my gut that I took two more probiotic capsules. We Shall See.

4:36 p.m.: Last night our daughter kept me up from 12:33 a.m. to 3:43 a.m. -- and my wife even longer. This afternoon I crashed into a nap at around 1:00 p.m., completely forgetting about my acupuncture appointment, and woke, in a bad way, at 2:41 p.m. when my daughter woke from her nap. I was on duty until about 3:33 p.m., and just felt hammered and groggy. I was nice to my son until his misbehavior annoyed me to the point that I roared at him. I went out, dug a weed in the front lawn, and came back and apologized to him.

I hope my being so completely out of tune is due to the sleep disruptions and not the penicillin. I have no other symptoms, like rash, swelling, itching, redness or shortness of breath.

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