Saturday, September 30, 2006


Let us praise Oster.

Back in the '80s, my gf and I lived together, and when we broke up, I got the blender. It was one of these old 1960s versions that her mom had given her when she went out in the world.

She wound up with my records, and sold every one of them.

I used the reliable blender until I married, and then our family used it. Last week my darling wife accidentally broke the glass blender container. She went to the local hardware store and got a new one, shown here, presto!

One should admire a company that still makes the same part 30 years later, that will fit and work with your existing parts.

Contrast this with the approach of Ziploc. They also make a line of small plastic containers for storing leftovers in the fridge. If you lose or damage a couple, and buy more a year later, you find out that they've changed the dimensions slightly, so that your old and new lids and bottoms are not interchangeable. They do this on purpose because if you want uniform behavior from your storage containers, you must buy a whole new set.

Oster has kept the same dimensions for decades. After 30 years of use, the old blender is starting to make a smoke smell. When we buy a new on, my vote will be Oster.

Friday, September 29, 2006

Dr. Quack

In our recent visit, Dr. Quack said he thought I was no worse than two months ago, and he prescribed a couple of new drugs. This is a chart of my grip strength:

The temporary increase in strength was after starting minocycline. We are going to start that again immediately.

I have been noticing since roughly March that when my temperature is taken, the reading is always a bit low. At the Dr. Quack visit it was 97.8 F. He said this is the ideal Lymes temperature. He said the bacteria get into your hypothalamus and down-regulate your temperature to the level that's best for them.

If that explains my temperature, that suggests to me that the past six months of ceftriaxone infusions have not disturbed my pathogens.

When I asked, he said use of an infrared sauna might help. He's a bit slow and parsimonious with useful information. I think that's because he has so many patients, due to the reluctance of medical insurance to treat Lymes.

They asked the imaging center for the report on my ultrasound after we reminded Dr. Quack of it.

Thursday, September 28, 2006

Dance of death

Sometimes you have no choice. When certain things happen, the body responds like a dog viscerally impaled on a stop sign. It dies.

The poor-quality video is of a case where I played chess against a more highly-rated player, who wound up having no choice, no decisions to make. It was the dance of death.

Wednesday, September 27, 2006

Proloquo speech software update

They wasted my time and effort with duplicate registrations, and an activation code that didn't work.

Here's the latest.

Thanks. I received an email today with a different activation code. This one worked. The process at this time is to waste peoples' effort while fretting them with useless codes.

My whole goal for this $250 product is to use customizable palettes, which you call panels. I'll be returning it for a refund if it doesn't fulfill that need, and sending the buzz out through the disabled community.

Right now the Panel menu is completely blank, non-responsive, nothing in it. There may be a way to import or design panels. The help system refers a search for 'panels' to only one document, a text introduction praising the product but not to my knowledge explaining panels.

Any help you could give -- no, not on the phone to my interpreter -- would be appreciated.

I'm sorry to be so blunt with you but I myself have had to represent companies and products that abuse the customer, and I feel I am doing a service to future customers by being honest.

I appreciate your helpfulness so far.

Tuesday, September 26, 2006


You have the honor of sitting with brainhell while he takes pills!


Monday, September 25, 2006


It may be funny, but it's the first attempt I have ever seen to address this issue. Flaw: He didn't enclose the structure to trap heat.

Some of my critics on Hooah Wife may be eager to conclude that I get my opinions from Democratic Underground, but I don't read it. A friend mailed me this link, saying that it was funny.

Sunday, September 24, 2006


When Dr. Quack said just over six months ago that most Lymes disease patients show signs of recovery after "five or six months" of antibiotic infusions. I did the mental math and came up with the date of September 2, six months after my first infusion (of this round) on March 2.

Am I showing signs of recovery?

On 9/19 I sat up in bed on my first try, and stood up (holding the invalid's bar) on the first try! No comical falling backward!

Every time I do something well, I tell myself it's a sign of recovery.

Here are the grip-strength charts, with the latest data from 9/20/06:

Left grip is 35 pounds (35, 34, 31), right grip is 15 pounds (14, 15, 7).

Oh that guy's dead!

We Shall See.

I do not know what the length of my life will be, and neither do you know your fate. But my life has been so satisfying, and the people I love, my wife and children so good, that even if my life were to end as soon as I typed the period on this sentence, I would not hesitate.

Saturday, September 23, 2006

Sucker-Chump study results

My brave, admirable, and freakishly healthy friend, Jansenist (the Sucker-Chump), allowed researchers to poke him in the spine -- twice! -- to draw out cerebral-spinal fluid to compare to that of people with ALS.

They only had 31 non-ALS volunteers out of roughly 275 million people in the United States. So all of you ladies sending me naked pictures of yourselves can stop feeling so charitable -- you never underwent a spinal tap for me.

From the Journal of Neurochemistry, Volume 95, Number 5, December 2005, pp. 1461-1471:

We identified 30 mass ion peaks with statistically
significant (p<0.01) differences between control and ALS subjects.

Also interesting:

The control group included 4 healthy subjects, 2 cases of demyelinating disorder, 1 neuropathy, 1 Lymes disease, 1 meningitis, and 1 stroke.


RL next applied these rules to make disease predictions in 20 coded test subjects that included 4 healthy subjects and 6 neurologic disease controls (see Methods). RL correctly identified 8 of 10 ALS subjects (RL provided no diagnostic prediction for one of the ALS subjects) and 6 of 10 control subjects. The diagnostic predictive values for this biomarker panel in the coded test group were: 80% sensitivity, 60% specificity and 74% accuracy. The overall coverage was 95% (19 of 20), which refers to the percentage of total predicted cases (ALS + Controls) excluding the “no prediction” case and the positive predictive value (PPV) for ALS was 89%. ALS subjects in the training set used to create the biomarker panel had an average time from symptom onset until CSF draw of 385 days, suggesting that our biomarker panel is most predictive for subjects within approximately one year from clinical symptom onset.

I bet that one ALS guy who the study could not cope with actually has Lymes disease instead, word.

Maybe I should have another spinal tap to see if the method detects me as ALS or not. But nah, I'm tired of being poked.

Friday, September 22, 2006

I don't think you're ever going to get better

They were walking to the park. I was coming along in the wheelchair. Along the way, another of the neighborhood kids joined us. My daughter was in the front of the pack. I was at the rear.

We'd been walking for about five minutes. "Dad!" she said, and turned. "What?" I slurred, and we met.

"I don't think you're ever going to get better," she said.

She's been saying goodnight to me each night with an added "Get well soon." To a three-year-old, this is probably part command, part experiment. She had hoped it would work.

I slurred "Will you still love me?" She didn't understand my words.


I repeated, but again she could not make it out. Fortunately my loving wife did understand, and repeated it.

"Yes!" said my daughter.

And that was all that mattered to me.

Now she says goodnight but still says "Get well soon."

Thursday, September 21, 2006


Some fun, zany kids posted a video response to this. Check it out.

A friend writes:

I spoke to Abbott Laboratories this morning and they said they have received a lot of complaints about the bottles being too difficult to unscrew and that they were already currently investigating a new cap that would ensure the integrity of the vitamins inside during shipping but easier to open. They were also going to look into the shrink wrap to make it easier to open.

In the meantime, they are mailing to me a special opener that they said patients with arthritis find useful. I did not want to give out your address without your permission. When I receive it, I will ship it to you.

Wednesday, September 20, 2006

bubble wrap

Ran over some bubble wrap in my wheelchair.


Tuesday, September 19, 2006

Best board

This one is my favorite board. It's simple yet majestic. It was given to me by an English friend who bought it in Poland from a street vendor.

In this game my opponent resigned because he saw the mate coming via the bishop and queen.

Monday, September 18, 2006


When we were getting ready to play chess, I saw that the board was turned the wrong way. I said "Turn it" at the same time that you started to turn it. You had seen the same problem. Good.

When I said "Turn it," you paused and looked at me. Again I said "Turn it," to let you know that you were doing the right thing. But you started turning it back the way it had been. I said "Turn it!" and you got upset bcause you thought I was yelling at you.

Sunday, September 17, 2006

brainhell vs. hoppy

I played black and I won, even though he is more highly rated than me.

I laboriously made a bad video of the game.

Saturday, September 16, 2006

Other thing

Oh yeah, and this other thing also arrived on Tuesday, the day they installed the closets.

I had a lovely lady cover the keyboard with plastic wrap, because gobs of liquid involuntarily fly out of my mouth from time to time. I cut and taped a hole in the plastic wrap for the trackpad, but I have ordered a wireless mouse. When I did so, I found out that when ordering the 'MacBook,' I could have got the printer for free. That was an $80 lesson learned.

I already have a pole that will attach the laptop to the wheelchair. The laptop can speak words that I type, which should help me communicate.

I would greatly prefer a program that has a predefined palette of common words that I could click on to build a sentence. I have not found one yet while searching the web using all-words: 'macintosh speech disability software palette.'

It would speak word by word, or only when the user told it to. And the user could always resort to typing in a small text box and have the Mac speak the phrase.

Surely there must be one. It would be so simple to program.

If any of you know of one, please tell me. And yes, I know that there are PC speech palettes. I have one in a 23-pound box under my desk. Unopened. The laptop shipped at 9.25 pounds, including container, packaging, cords, and other bits.

This laptop has a built-in iSight camera. I have already used it to make a video. I have the same setup as renetto, a star on YouTube, which must now be repeatedly accused of treason and terrorism in a kill-the-messenger move because some righties don't like uncontrolled thinking.

UPDATE: LTG provided a link to a product, and I just ordered it on the net. Blogging is not pointless.

Friday, September 15, 2006


The closet people came Tuesday and installed the shelves and rods. We moved my stuff that had been on the floor onto the shelves!

The first thing I put into it was a chess set given to me by a friend.


Thursday, September 14, 2006

Just because

Since you brought back the ATM undercarriage with solid rear tires, there have been no flats or fear of flats.


In another incident apparently showing flaws in the ATM design, the front tire again came off the rim after I hit some small lip in the concrete. Using the one spare front wheel we had on hand, my glorious and sexy wife managed to fix the chair despite pinching her fingers with pliers, and despite her back pains, while I shivered beside the car in shorts.

Can you please send us and bill us for two replacement front wheels?

Question: Since it is lateral force that dislodges the front tire, might it help to reinforce by applying epoxy to the tire and rim?

Thank you,


Wednesday, September 13, 2006

Get up, stand up

While in bed, the ligaments that connect my thigh muscles by the hip points were getting tight and hurting. It was like an electromagnetic wire going taut.

After a few days of this, I intuited that the problem came from sitting in the wheelchair all day without standing up. Now I make a point of standing up for several minutes each day. The problem is not gone, but it happens a lot less often.

Tuesday, September 12, 2006


I have trouble spitting out all the thick saliva before bed. I would get ready to hawk out a mass of it and nothing but a disappointing dribble. It's been months now. A few days ago I finally realized that most of the force of the spit attempt was going out my nose as air.

So now I pinch my nose when spitting, which has greatly improved things.

Monday, September 11, 2006


My tubeless wheelchair tires are here! I was getting tired of worrying about flats. The guy admitted it's a big problem with the ATM chair.

Sunday, September 10, 2006

Bed bar

There's a grab bar on my side of the bed now. I was having trouble levering myself up. The bar makes it easier, but not easy. And it's highly unlikely I'll fall out of bed while sleeping!

Saturday, September 09, 2006

Democrat liars!

WASHINGTON - There's no evidence Saddam Hussein had a relationship with Abu Musab al-Zarqawi and his Al-Qaida associates, according to a Senate report on prewar intelligence on Iraq. Democrats said the report undercuts President Bush's justification for going to war.

So those traitor Democrat Party members have issued a report that Hussein had no relationship with Abu Musab al-Zarqawi and his Al Qaeda associates. Big woop!

As soon as those Democrat Party members got a majority in the Senate they started making up their own 'facts.' Put Republicans in control of the Senate and they'll issue truthful reports!

Friday, September 08, 2006


Mamabear left a comment a while back that impressed me. A lot. So I offer it for you to read:

Pee in a jug, symptom control, loss of freedom regards activities of daily living. It is what I do as a nurse every night.

I know this doesn't make sense but sometimes it is painful for me to read yer blog knowing there is nothing I can do or say to alleviate yer pain. I carry you in my thoughts at work and try to minister to those under my direct control....I give them the vicodin, morphine, dilaudid. I rub the antifungal cream, administer the IV antibiotics and fluids. You would be surprised to know how often I think of you and pray for you.

Many times, usually with the elderly, I will be cleaning up lakes of diarrhea, and the little person will be so embarrassed and say to me, "how can you do this work?" and I usually reply to them "today is your day, tomorrow or the next day will be mine, we take turns don't we? I hope I have a good nurse to care for me when it is my time. Relax and let me care for you today."

it usually puts their mind and heart at ease.

I hope you have a good nurse and support system Brainhell. I am sure you do. is the human experience and we must go our way alone. I hope my prayers and wishes for your strength and peace of mind reach you in yer alone times.

By continuing to share yer life with us you show us how strong and capable you really are. It is quite inspiring. When my time comes to deal with whatever adversity is thrown my way.....I will whisper "Brainhell" and remember.

Still..right now, I feel pretty helpless.

Thursday, September 07, 2006

Robot exoskeleton

I remember reading in Wired magazine a few years ago about a Starship Troopers type of suit for our soldiers, that is under development in the here and now. It's basically a pair of mechanized legs the troop wears, and a frame up the back. The idea is that one could carry 200 pounds and still sprint. I think I watched a video of it in action. Does anyone else remember that?

Plus, they got these sorry-ass, tiny little Sony robots.

I can't walk anymore. But I know that if I wore a robot exoskeleton I could. There are already computer interfaces that observe your pupils to control a mouse. My robot exoskeleton would observe my pupils and set waypoints to go where I wanted. If I make a mistake, the thing protects me so that I don't fall.

Why don't I have one already? Why can't buy one? This is a huge oversight.

UPDATE: Ask and you shall receive. John has been following this issue for a while, and provides the article in New Scientist.


Wednesday, September 06, 2006


I had an ultrasound yesterday. They want to see if my abdominal pains are caused by gallstones induced by the ceftriaxone infusions. I think the report will be that I have no gallstones.

My exceptional wife, darling daughter, and goodly CNA all came with me. I got the images on a CD. I like this one because the gall bladder, shown here, looks like a rodent ... or a fetus.

By the way, you can ALL congratulate me for not making any pregnancy-related jokes or references to the staff. They must be SO tired of guys getting an ultrasound saying "Is it a boy or a girl?"

Tuesday, September 05, 2006

Tracey Ullman

I used to watch The Tracey Ullman Show on television (gasp!). I once told a girlfriend that she reminded me of Tracey Ullman. "You mean Uma Thurman?" she replied, "Thanks!"

On The Tracey Ullman Show there was a short cartoon that I liked, called "The Simpsons." It was too good. When the network devoted an entire series to The Simpsons, I called my sister, told her there was this really great new cartoon series, and made her PROMISE to tape every single episode on their VCR1, because the concept was so good that the series would be canceled right away. I said this.

They had things like VCRs. I had a 13" black and white TV sitting on 'furniture' I liberated from the trash bin area at the supermarket.

Monday, September 04, 2006

brainhell2003 ---

I have switched my email address. I am now brainhell2003 you know what goes here

Breaks my heart


Sunday, September 03, 2006

Get well soon

Two weeks ago in idle, rapid three-year-old conversation after dinner my daughter said we'd do something "after you get better." She looked me right in the eyes when she said it, to gauge my reaction.

Then last week when kissing me goodnight, she turned back and said: "Oh! I forgot. Get well soon."

The next night she hugged me with "Get well soon" and then said "Maybe we should send you a card that says 'I hope you get well soon.'"

Darling, I hope I will. And if you're reading this after I'm dead, let me just say that being father to you and your brother made me so proud and happy that anything else, even an inconvenient fatal affliction, shrinks to nothing in comparison.

Saturday, September 02, 2006



Daddy wrote this note, even though Mommy is reading it.

Son, who is this note from? Good. And now can you point to him? Good.

Daughter, who is this note from? Good. And now can you point to him? Good.

Daddy says: Kids, I am sorry that my nerve signal problem makes it hard for me to talk, and hard to walk. I love you both, and if I did not have this problem I would run with you and chase you and rides bikes with you.

I am going to stay home when you go to camp. You and your mom will go without me. The reason is that long car trips make my legs and my butt hurt. And most of the ground at the camp is not good for wheelchairs. And they don't have all the comforts of home there. I will be fine here. I like it here, and it is only for four days. When you come back, I want to hear all about your trip.

Maybe it makes you sad that I cannot do those things. It makes me sad, too. But then I think about how lucky I am to have you two as my children. Then I don't feel sad. I feel lucky. Today I am the luckiest man on the face of this Earth.

I would never want to be cured of this problem if it meant that I saw any less of you.

The doctors don't know how to fix my problem, and you kids cannot fix it, either. But by having me as your daddy, you make me very happy. And no doctor can do that. Except your mom, who is a doctor, but not that sort of doctor.

Being the dad in this family is the most important thing to me. Thank you.

I love you. I love you. I love you.

Left grip is 16 pounds (12, 15, 16), right grip is 40 pounds (36, 40, 40).


Friday, September 01, 2006


I believe that people should have the right to take photos in public places without any restrictions from the government. But some states have laws about it. I don't know, but they might have to do with consent forms and whether the image is used for profit. I don't know.

But I do know that if you take someone's picture in public without their permission, you should understand that you run the risk of being assaulted.

Back when I was almost 30 I used to run every day. I would finish the run with a massive sprint up a very slight grade to my apartment building. There were some artist types around and one of them must have noticed me and decided to get a picture. I have an interesting, handsome face with lots of angles and planes, great jaw and cheekbones, dark, strong eyebrows. At the end of the sprint I must have looked dramatic, as if in extremis.

He hid behind a bush and got the shot. I flashed on grabbing his camera and ripping the film out. All I did was look at him in disgust and walk away.

Then there was the old guy at the mall a few years ago, with the 'unused' camera on a strap and with the big lens that just happened to jut out level from his hip. This is a favorite method of cowards who want candid shots. The shutter trigger is in his hand in his pocket. That lens just by chance happened to wind up pointing at me several times. Each time I would turn my back. I bet he got his shot, though.

Then, a few months ago, my beautiful wife and I were at the park. I was in the wheelchair. Some guy with an enormous lens took position a hundred yards away and focused on us. Without my kind and accommodating wife noticing, I gave him the finger and kept holding it up. To his credit, he got the message and put the camera down.

You should be free to take pictures in public. But understand that you look like a jerk of you don't get permission.
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