I tried napping with the bipap on Monday. The full face mask that they informed us would not help prevent saliva being forced out of my mouth by the pressure from the nose-only mask did indeed help. The reason is elementary: Imagine a hose with some fluid in it, and you must choose to blow into one end of the hose, or both, to prevent fluid leakage.

I think that the reason they told us the full mask would not help is that they are a volume shop, and seek to eliminate marginal costs.

The first bipap we had broke with error code E53, and they replaced it.

I might be able to nap or sleep with the bipap. However, there are two remaining major problems:

1. The inhale/exhale cycle is highly variable and erratic. Sometimes the inhale period is one full second, but very often it is 1/5 to 1/2 of a second. I think it quite likely they will say this is impossible, or blame us, but I wear it, and I know.

2. The alarm sounds every few minutes.

Typical post at the Hooah Wife blog and my response:

The People Vs. The First Amendment

I heard on the news, though I can’t find a link yet, that the men who were the brunt of Michael Richards tirade are planning on suing him. Question. Why? Isn’t what he said, no matter how ignorant, covered under the First Amendment? You know, that whole Freedom of Speech thing. Now, there are times when I don’t like the first amendment but to sue someone for exorcising that right is pushing it a little. I don’t like what Michael Moore has to say, does that mean I can sue him. Can I sue the people who call me a Nazi and war cheerleader? BH, I’ll see you in court.

1. brainhell Says:
November 26th, 2006 at 2:04 pm e

When I took a media law class during my masters at a major, prestigious university, I learned a little about the First Amendment. I’m gonna guess here that the cause of action will not be his speech, but the contractual relationship between paying customer and entertainer, which he violated by heaping emotional distress and false light on them. Don’t worry. Chris, the First Amendment still protects speech; You can’t sue Michael Moore. I never called you a Nazi, but recall the class discussion on hyperbole and you’ll see that I could. I have said that you cheer for war and are a single male of service age who has no plan to enlist. That makes you a hypocrite, which, in other contexts, you have called yourself.

Son,

You are playing Risk well and learning quickly. I have some information that can improve your play:

Your chances of rolling a 6 are one in six, or 1/6. So are the chances of the defender. And in case of a tie, the defender wins. So from this we can assert the following:

+Try not to plan attacks where you have fewer armies than the defender. That just means that the defender has two dice for a longer time, and more chances to win.

Also, the key to winning is controlling more continents. This gives you extra armies. So from this we can assert the following:

+ Try to take away a country on each continent that your opponent owns.

+ Try to get continents, and put large groups of armies at the edges, the places another player might try to attack to deny you the extra armies.

Most importantly, KNOW WHEN TO STOP ATTACKING! Decide what your objective for that turn is, and stop after achieving it. Taking a lot of countries spreads your armies thinly over the board, and makes you vulnerable to counterattack.

Yes it's true! Now you can play Risk^TM on the internet against brainhell -- for free! Download the cross-platform game (free!). and show brainhell he's not as smart as he thinks he is!

I'll announce game results in this blog! I can play five of you at once!!

Sorry I did not come to the conference today. I wasn't ready. Plus, I had a horrible coughing fit.

I haven't heard my wife's account of the conference, just looked at her minimal topic notes and our son's journal. It seems that you are seeing evidence of 1. him not feeling challenged and 2. daily moods.

We don't want him to develop a bad attitude about school.

Often what kids say and do in class is a replay of their parents. But we have never told him that school work is beneath him. We rarely talk about school at all.

We took responsibility for acquiring supplemental materials for the class. I now realize that given my disability and my wife's state of overwork, that was a mistake. I would therefore ask if you can think of advanced optional materials the class might benefit from, and that you could challenge our son with. I am guessing this might cost less than $200, but if you have something great in mind that costs more, by all means let us know.

My sympatico nurse uses Emla cream on the skin over the port, so that it does not hurt. I can't believe how many times the other two nurses stuck me with no prep. Sure, it doesn't hurt much, but it still stings.

She also got me a laser-based blood oxygen monitor, which consistently shows 98 or 99 percent for me.

There are times when I call you on the phone and you ask if I am OK, but I am coughing, wheezing or laughing and cannot respond well. I suggest that it be understood that in answer to any yes/no question, that if i briefly press one button it means 'yes,' but that if I hold down the button it means no.

The SAME system can be used with eye blinks.

It's evident that we're going to need a couple more of the tube segments that go on the end of the PEG. How do we order and pay for them please? I'm surprised that no one at the clinic pre-loaded this info to us.

BTW, since so many patients communicate primarily through computer, please PLEASE tell me how I can email clinic directors and doctors without having to pester those at your level. No, I don't mean with this PEG question. This I address to you. I well understand the fear of the time suck of endless chatty patient emails. But procedures to forfend that can easily be implemented.

Really, it's time to move into the 1990s. The current setup is unprofessional.

Thank you for helping me yesterday. I think you felt shouted at, at one point. I did not intend that and I apologize.

It is frustrating to me that I cannot talk. I react with frustration. I also find that angry enunciation can be more comprehendible.

It is easy for me to say 'Don't take offense,' but I hope to convey that I mean to give none.

By the way, the reason that the chair would not go is that moisture on the drive mechanisms disables them.

IV ceftriaxone via port-a-cath. Two cans of Jevity 1.5 via tube. Mix in one capsule of lipo-similase and one teaspoon of Co-Q10 with a small amount of Jevity, then add to the rest of the Jevity.

Prepare minocycline, quinine, one heaping scoop of creatine, and DHEA powders in container for use via tube at bedtime. In another container grind magnesium malate (2 capsules) and probiotics (one scoop), for use just before dinner.

Mid-morning: 12 to 16 ounces of water via water bag to tube.

Two hours after food, two capsules minocycline via syringe to tube.

Lunch: two cans of Jevity 1.5 via tube with one capsule of lipo-similase added as described in step one.

Mid-afternoon: 12 ounces of water via water bag, and 8 ounces of papaya nectar via feeding bag.

One syringe of magnesium malate (2 capsules) and probiotics (one scoop), mixed with water, just before dinner. Dinner: two cans of Jevity 1.5 via tube and one capsule of lipo-similase added as described in step one.

Bedtime: Quinine, minocycline, creatine, and DHEA (prepared earlier) via tube.

I got a jury summons. I checked the box saying that my disability prevents me from serving. It's true: I would likely laugh at the gunshot victim who'll never walk again. Oooo, poor baby!

One time in my 20s or early 30s I saw the grocery store manager hassling a beggar outside the store, telling him to get lost, he wasn't wanted. I told the manager I'd never shop there again. There was another store one block farther. I went there. I had no car yet and carried my groceries by hand. But one time I did go back to the closer store, not sure why. There was another beggar with a sign saying he was hungry. I asked him what he wanted to eat, said I'd buy it for him. He seemed unenthusiastic but agreed to a bagel. I shopped quickly and when I came out, the guy was gone. No, I don't think they ran him off too. And yes I know it makes a better story if it's the new store, and the same beggar, but oh well.

Many in the GOP will praise McCain as a 'real' conservative as they seek to cope with the Bush fiasco. They'll say he's honest and principled. I don't expect Rice to announce, but I do think she'll be drafted as veep at the convention, to placate media thirst for something to pair against the Hillary Clinton possibility.

I've told you how sympatico my local neurologist is. Well out of the blue I got a new infusion nurse (the one who changes the port needle weekly). She's very sympatico too. Plays chess, a Trekker, plays strategic war games. Kindred spirits. Turns out that by way of an ex-husband, she is already friends with my local neurologist!

Cool people form networks.

She's getting better at chess, almost beat me recently.

Winning isn't everything...



Yeserday the allergist pricked my arms 29 times and said I'm allergic to rye grass, Bermuda grass, some kind of bacteria that begins with an 'A' and is generally not found in houses, and dust mites. He gave me two inhalers, and a prescription for medication to be delivered via a nebulizer, yet another piece of medical equipment to fill our house.

My lovely wife came with me.

Rusticate Girl and Hermana Bee gave birth!!! Hermana is not currently blogging, but you can read RG's announcement in her Nov. 8 post, "Welcome, Baby Boy"

Reading RG, I started to get emotional because her hospital trauma reminded me of mine ... but then I remembered: Mine was EASY compared to the stress if there had been a child involved.

Dr. Quack is reducing my ceftriaxone down to about 500 mg per day, eliminating the rifampin, and putting me on Zithromax and some other drug with an 'M' in its name. He also wants me to do hyperbaric oxygen, which does have risks.

Someone appears to be artificially inflating my web hits. I wish they would stop.

In her 11/10/2006 post "Rejection Stings", Josephine writes about the problem with being pretty.

Years ago I wrote a poem, and I had my wife-to-be in mind at the time:

it's like walking around
with a million-dollar bill,
taped to your forehead

people gonna treat you
different

It was around 1970 when we encountered a stone monument carved with the words “The war to end all wars.” They said it meant WWI. I asked why they called it that, given WWII. Grampa, who had served in WWI, started cursing about the damn Germans. Mom told me to stop asking.

There were hundreds of electoral races Nov. 7. Given the perception by some that vote totals in the 2004 presidential race were electronically jiggered -- since they differed from the exit polls, I ask: What was the biggest difference between exit polls and tallies Tuesday? Given the meme that exit polls don't work, should we not expect them to continue to not work? Given the meme that Democrats are said to be more likely to answer exit polls, should we not expect to see an even larger -- and more widespread -- effect in Tuesday's result?

I rarely have peace and rest. I'm usually dealing with getting rid of saliva, getting air, or coughing. In the past couple of days even my sleep has been tense. As I had to sleep on my back, I'd wake with a neck ache from how I had to position my head to get air.

Crying with no good reason today. For example, to Springsteen's song "Growin' up." I think it's because of the minor chords and because I am right now growing up, if you get me. Get me?

Melissa, thank you for explaining minor chords to me, the church chords.

I am amazed how many love me, some of whom I've never met.

I played an International Master on ICC! Probably Russian. I played black. Here the IM has checked me with the bishop when I had to resign due to a distracting event in my house:



I lost, would have lost, was bound to lose. What I am proud of is disrupting the IM's pawn line in front of the white king.

My rating:

Yesterday the gut ache started at 4:45 PM. At first I thought it was gas, then poop urge. Made big poop. Called admired wife and slurred "Come home!" Then because of pain, at 4:55 I took one vicodin. Can chew them. Spilled water on floor and shoes.

She came home and helped me get on bed. By 5:45 was feeling much better. I thought the pain was less intense, brifer because have been taking one lipo-similase daily. Now plan to take two or three. Darling wife says: Should be with each meal.

At 1:27 AM pain returned, milder. Metaphor: Healthy, vigorous young man punches you in your relaxed gut. I imagined nurse Mamabear sitting in a chair at bedside saying "Hold on, brainhell. Hold on, it's only pain. Find a good enough position and leave well enough alone."

But at 3:02 AM I woke my beloved wife and had her grind a vicodin and put it through the PEG tube.

Still hurt. At 4:55 AM I woke free from pain, slept again. At 7 AM it was hinting at a return to pain. At 9 AM I asked for half a vicodin via tube, got up with much help, and completed writing this. Right now it's like a stomach ache.

Working on a plan to keep you informed if I kick.

Mao had some quote about revolutionaries being the fish, and the people the water, or like that. The US military is the fish, the shark, that can go anywhere it wants. But the insurgents are the water, filling in behind the shark, which is incapable of leaving even a void.

Jansenist writes:

It makes perfect sense to me that the near asphyxiation and the tube insertion were very psychologically bruising for you. They would be real tough experiences for me, for sure.

I remember the day you called me almost three years ago. I think it was the day they sent you for an MRI. You didn't know what you had, but you were pretty sure it was something very serious.

"John, I am not afraid to die. It's my kids..."

I knew then you were giving it to me straight. I knew it was the truth and that I would feel the same way in your shoes.

I hope you live a good long while, long enough for a medical breakthrough. But the near asphyxiation forced me to face the reality that in your condition something could happen in the short term that kills or severely weakens you.

So here's what I need to say to you:

Ronululu wrote a while back: "My words can't convey the joy of being your friend over the years."

Right on. Our friendship has been a great source of joy for me. I have so many good memories.

And I am very proud too that you count me among your friends. To be a friend of brainhell is to belong to a select group. A lot of people's applications have ended up in the shredder over the years. I may not have met the other members, but I know each has to be very special. You are not the kind that keeps people around just so you have someone to talk with.

You have influenced me in so many ways just by being the person you are. Ways that I haven't even thought about yet. If you die, I think it will take awhile, perhaps years, for me to realize the full extent of your influence.

I don't know anyone else like you and odds are I never will. If I ever do meet another brainhell-like person, I will consider myself very fortunate. (Right off we'll be able to talk about the importance of saving old tofu containers in order to have molds for making candles out of our dried doodoo in the aftermath of a nuclear attack or some other catastrophe that severely cripples the infrastructure!)

Turning now to practical concerns:

1) Given the increasing difficulty of speaking, is there something on the technology front that will allow you to
communicate?

2) A while ago you blogged about something that appeared in a San Franciso paper. Some researchers seemed to think they found the protein that causes the damage in ALS. I expected after reading it that some ALS group would be putting out a news release within a few days saying they are funding more work in this area. But I haven't seen anything. Have you?

Thanks, Jansenist.

1. I have a laptop computer that can speak.

2. No, I haven't heard anything more on that.

I think that the various pain and terror I have been through -- particulary the near-asphyxiation followed by the PEG insertion -- has messed me up pretty good. I'm still the same person with the same joy but I am psychologically harmed. At least I know it, and I know how to accept and heal it. So shove your therapy recomendation. That ain't me. I spent a couple of weeks after the operation crying very easily. Grieving is good. I think I was reacting to the trauma of being tortured, and accepting that I will die.

The exoskeleton

It may be time to hook up the bidet; I have trouble adequately wiping myself.

This morning I sat up and got into the wheelchair all by myself.

This morning I urinated all over my socks and sweat pants and the bathroom floor.

Yesterday morning for the first time since the operation, I stood up out of bed without my hardworking wife helping me by pulling up on my left armpit. I don't think my inability was recovery related; almost no abdominal muscles are involved. I think my success was related to mental practice of the same old technique I had used prior to the operation: Position the feet just so, place the hands on the wheelchair, and pull to standing.

This morning, today, I needed help sitting up, but not standing up. Go figure.

My annoying cough is a real trial. I think I should see an allergist, because it can be awful one day and gone the next.

Mamabear mentions Tessalon Perles (benzonatate)...

"Benzonatate is a medication taken orally to suppress coughs. It has an anesthetic (numbing) action similar to that of benzocaine and "numbs" the stretch sensors in the lungs. It is the stretching of these sensors with breathing that causes the cough. Benzonatate begins to work within 15 to 20 minutes, and its effects last for approximately 3 hours."

But I might have a lot of trouble with this:

"The capsules should be swallowed whole; they should not be broken or chewed."

I will never take it:

"SIDE EFFECTS: The most frequent adverse reactions of benzonatate include sedation, headache, mild dizziness, constipation, nausea, and vomiting."

Dear kids

Sometimes I feel guilty that my disability means that you do not have a normal dad. I would like to piggyback you, but I can't even walk. I would like to read you stories, but I can't even talk.

Sometimes it makes me sad. Does it make you sad too? I am sorry if it does.

It must be weird having a dad who has a wheelchair, and all this weird medical equipment.

It also makes me worried. I didn't know it would become this big of a problem. I hope that it does not get worse, but it could.

No matter what, though, any sadness or worries I have are tiny compared to the joy of loving your mother and being father to you two kids.

I am very happy, and I love this family. Thank you!

Now hear this

OK, I have completed my hospital tale.

I have many more stories to tell. But I don't owe you people anything. And I have to put it that way because I have become very fond of you, my online family. However, I have an actual family, and letting them down is worse than failing y'all.

I have been pleased and amazed to see the average number of daily visitors to this blog reach 153 -- readership growing slower than the internet itself!

My body is very messed up. A guy emailed me recently and said that because I write so well, people might thing I was doing better than I am. I'm not doing well.

Here is a watercolor based on a photograph of my beloved wife and I on our honeymoon:



I have my hopes, but looked at rationally, my case closely matches the ALS death spiral.

Yes, I plan to keep posting, but don't freak out if I go a few days or weeks without posting. I owe you nothing.

Thank you all for reading and commenting and emailing. I didn't plan on having this horrid affliction, nor did I imagine what a great group of strangers would accompany me.