Experience ALS

Now, you all might be forgiven for thinking that I have had no symptom progression at all in the six months since my diagnosis, but in fact my left hand has become harder to control. Come back in the room, ladies, that's not what I meant. Point your finger. Make a peace sign. My left hand does that real slow, and the fingers stay partly curled. Basically what is happening is that some of the nerves have died off and the remaining few have the duty of telling all the digits what to do. Also, it seems like when those few try to send signals that require one digit to do one thing while another does something else, things get mixed up, and the motion that occurs obeys the average of the two signals.

A similar thing afflicts my left leg, which just doesn't rise up high enough when I put my pants on while standing. But that's been the same for six months, as far as I can tell. My jogging has gotten more stiff on the left side, as I mentioned a while back, but I haven't been running much at all lately. So I'll let you know.

But! I came up for a way for you to experience ALS, at least insofar as I now experience it. On the radio the other week I heard someone talk about how his mother experienced a "tortuous death" from Lou Gehrig's disease. I don't get that, and I hope it will be a long time before I ever do. Or that it be an experience I am deprived of. By the Starship Enterprise diving towards the sun to travel back in time and deliver me the cure. Why? Why, because I am a direct ancestor of Captain Kirk.

Here's what you do to understand what ALS is like for me:

Perplexing limb insubordination:
1. Turn your head all the way to the side, as far as it will go. Now turn it farther, so that you are looking directly backwards. That's the response I get when I try to move my fingers in certain ways, or move my leg really fast.

Here's another way to do the same thing: extend your arm so that your elbow joint has no flex left. Now try to bend your arm backward at the elbow. You're sending the signal, what's happening?

Cramping
2. Curl your thumb down toward your wrist. No, not with your other hand! By itself! Now try harder ... harder ... until the thumb muscle cramps. Do it like that for an hour if you have to, until you feel like the muscle cells are just going to pop into little puddles of goo. That's what it feels like when I wake up and stretch while yawning. In fact, I have had to learn a new way of stretching: Instead of curling, as I tend to do, I extend the limbs. That way the cramps are usually avoided.

I went looking for other ALS blogs today. There aren't any (that I have found). But there are mentions of the condition. You get a sense of how lucky I am when you read the April 16, 2003 entry from someone's blog:

"It seemed unreal when they found out their father, only 57 years old, had Amyotrophic Lateral Sclerosis--otherwise known as Lou Gehrig's disease. From the time he was diagnosed 8 months ago until now, he has gone from a hard-working man to a bed-ridden invalid who cannot walk, eat, or urinate on his own. He is rapidly losing his ability to speak; he told his family about a month ago that if they wanted to ask him anything, they should do it now."

I think we know what has happened to their father in the intervening 15 months.

How can I go around feeling lucky that I am surviving so long and so well with ALS? Does that mean gloating that other people must suffer while I don't? Sometimes I have brief flashes of what you might call survivor guilt. I catch myself thinking that it would be more convincing if I were to limp, or thinking that there may be a sudden simultaneous malfunction of many parts of my body, that it would affirm the credibility of my diagnosis, and the anticipation and faith all my friends have in me dying. See? I would say, I really do have it!

But fortunately those notions are only flashes, and I surpress them with great prejudice. I believe in the power of visualization, and I don't intend to visualize for one second that I die. I think that the father mentioned in the other blog wouldn't want me to, either.

Decision 2004


An English friend sent me some questions about the election...

> What are your views on the American election?

I like to try to analyze where things are, what the salient points are, and guess what is coming in the future. One thing I have learned from experience, though, is that my prognostications are almost always horribly voided by the actual process of unfolding events. That's the fickle nature of history: You miss one little thing, like, for instance, reality, and you wind up wrong.

It also spooks me to predict things, because the universe has an irony potential that it needs to dissipate, and it does so in the same way the atmosphere and earth dissipate an electric potential: By blasting the first fool to stick his head up. So as a counter-measure I must say: "I don't mean anything I am about to write..."

My mystery comment, which may prove prophetic, but which is probably just laying the groundwork for you to laugh at me, is: "Electoral College."

On to my laughable analysis...

> Do you think Bush will win (I have to say
> that I think he will, sadly)?

While the polls show things being even at the moment, I don't think they'll stay that way. My gut tells me that either candidate may win, but it will be by a healthy margin.

The historically large amount of money spent on negative advertising to define Kerry has proven ineffective. Kerry meanwhile remains unfamiliar to most Americans. At some point they will come to know him, or some fiction of him, and that will contribute to the large margin, either in his favor or against him.

We could take as our baseline the fact that Bush actually got less votes than Gore in 2000, but due to the events of 9/11 and afterwards, we are in a whole new dispensation, and whatever people thought of him before 9/11 has been totally recast by the day, sanctifying him in the eyes of some and demonizing him in the eyes of others.

Meanwhile the war on terrorism, and the conflict in Iraq, have their own enormous potential to release for one candidate and against another. Some catastrophe in the war in Iraq, or other American defeat or humiliation, or merely the continuation of the toothache, could sink Bush. Revelations about the policy that authorized the Abu Ghraib torture and murder could do likewise. (Yes, I too am amazed that the scandal did not lead to impeachment. But remember, this is America. Oral sex is bad). Equally potent are the ways in which events could assist Bush. The capture of Osama bin Laden at the right moment just before the election, whether genuine or faked, might put Bush over the top. In this regard we must remind ourselves that the average IQ is kept at 100 (despite the trend of IQ creep) not just because it is a convenient point, but because, on average, human IQ is 100. Look around at all your intelligent friends, while I look around at mine, and realize that out there are enough people, American voters, to bring the average IQ back down to 100. And that reality is repeated in droves and droves across this fair land. There are enough people who vote with all the analytical depth of a crowd cheering at a circus. Witness Governor Schwarzenegger.

But as Churchill more or less said, it's the best form of government there is. I mean that sincerely. There is a wisdom that comes from letting all the people vote, in their millions, that would be lost if the choice were up to just you and me and our friends. I have a faith that the world continues to teeter past apocalypse after apocalypse in part because of the wisdom of fools. Left in the hands of just the 'smart ones,' the world would be ashes.

Letting all the people vote didn't happen in 2000, where for example the state of Florida engaged in various tricks to discourage Democrats from voting. Which brings us to the next salient factor: Diebold, the Republican-allied company that runs the electronic voting machines with laughable security gaps, a proven history of improper handling, and no paper receipts, that are being used in many places to "solve" the problem of hanging chads. Fortunately, as I write this, the state of California has all but banned the machines. No, I don't know which of the "battleground" states are using these machines. I have only so many things I can handle at one time.

Then there is the possibility that the administration will cancel or postpone the election in response to a real or phony terrorist menace. I kid you not. A Bush-appointed election official actually used the word 'cancel' in a memo to the White House.

Wiser heads have pointed out that in the event of a natural disaster such as a tornado or flood, a state governor should be able to extend the voting period, to give people a chance to complete the vote, which would allow the national election to continue, and complete, with as many votes counted as possible. Wisdom is not a property of the Bush administration, so don't expect this idea to gain a wide audience.

But in the event of the unthinkable (which has become quite thinkable despite its horror), such as a nuclear device destroying one of our cities, the people who are dead are no longer able to vote, and the polling in that region of the state should just be prolonged until a satisfactory number of survivors have voted.

Which brings me to my mystery comment, "Electoral College." For you European and English folks not familiar with democracy ... (hah hah, I couldn't resist!) ... for those of you not familiar with our system, the Electoral College is an obscure but central mechanism in our process. Everyone loves to hate it because it is so profoundly anti-democratic. The way it works is that when you vote for president, you are voting for that candidate's electors. It is the members of the Electoral College who actually elect the president. And are they bound to vote for the candidate they represent? No. That's what I meant by profoundly anti-democratic. There have been one or two minor incidents, I believe, where an elector did not vote for his candidate, but never, I think, a case where the Electoral College disobeyed the will of the people.

This year could be different. My gut tells me that the current administration is radical not just in the ways we have seen, but also potentially in the way Julius Caesar was radical. Yeah, like that. Like, here's the Rubicon, and here is George Bush's toe, dipping in and testing... That's what my gut tells me.

Now, if there is some kind of crippled election, on time or late, or some Diebold vote manipulation, or an actual terrorist event, or some combination of all of these, then the electoral college may come into play, to reverse a Bush attempt at a putsch, or perhaps as part of a Republican plan to effect one.

I hope you are not fitting me for a tinfoil hat at this point. I am not a conspiracy theorist. Many things in history can happen as a result of people with shared interests acting in concert without even knowing each others' plans.

> What do you think of Kerry? I know that you support his
> election efforts, but is that more because he's not Bush,
> rather than because he is Kerry?

Kerry is competent, honest, and strong and will move this country in the right direction. I would vote for him over any president who has served in my lifetime, aside from Clinton. And yes that includes Kennedy and Johnson and Carter. In addition, I am strongly motivated by the fact that Bush is so truly awful. If Bush were Eisenhower, I might feel differently. Ike would not have gone into Iraq, or allowed torture of prisoners, or undermined the Constitution. He would have tried to protect us, instead of just trying to win an election.

> And, perhaps most importantly of all, how is
> the media portraying it over there?

Well, since I don't watch TV, I don't know the answer to that. From the news I read on the web I'd say they are fair. Although for example I just read a Newsweek profile that damned Kerry with faint praise and made him seem like a strange outsider.

> Here in England we hear absolutely nothing
> about Bush and the election.

I believe that even people overseas can contribute money to MoveOn.Org, which conducts ongoing political campaigns for a progressive policy, and has since the Clinton impeachment period.

> Everything is Kerry Kerry Kerry.

I guess we know who they'd vote for. I sometimes wonder what it must be like to be a European, knowing that America has such a huge impact on the world and its future, and see it governed by fools.

> You'd be forgiven for thinking that Bush had withdrawn
> and it was a one-man race.

It's not. Bush is always on the move.

> But is it like that where it actually
> matters, in America?

All I can say is that while things are even, and fairly 'normal' right now, they will not remain that way all the way to election day.

Rubble management

Here I have finally completed the tearing out of drywall, and I discover that my rubble management technique was suboptimal. Now, that's a fair sized pile of rubble I have there in the garage, and I started in as usual, standing there with a crow bar, and banging the chunks to bits. Ideal bit size is about half the size of a dollar bill.

It takes a fair bit of effort and a boy works up a sweat. Then I decided to try a new way, and I hunkered down and started chipping off bits with the duckbill end of the alpinesque hammer. I had assumed that this approach would tire out my arm, but in fact it was easier than using the crowbar, faster, and more effective.

But there is a goodly pile of rubble. So it will take a while. I noticed that the sharp tip of the duckbill blade on the alpinesque hammer was leaving little shallow dings in the concrete floor of the garage, so I started using a piece of 3/4-inch plywood as my anvil.

After I get the rubble in the buckets, or perhaps before, I will nail up the A-35 clamps that help strengthen the connection between the joists and the lower part of the frame.

And there is always the baseboard project, the way for which has been cleared by the fact that I bought a little tool that is basically a hacksaw blade with a plastic handle on it, and used it to bring this one piece that was freakishly out of line back into some approximation of normalcy.

Today I listened to parts of the Democratic National Convention on the radio. Even as I worked in the garage.

Me mighty tool

This morning I tore out all the drywall on the west wall of the garage, meaning that once I clean up the rubble and pull out the nails, the laundry migration can commence. We've located a good woman contractor who says she can do the job. We specifically sought out women contractors because we felt they would be more honest, listen and communicate more clearly, honor our stated goals more closely, and have less of a tendancy to nod and then just do it the way they prefer to.

Not that women can't be snakes. Cateye and I worked on a project together and can vouch for the evil that women can do. But regarding our house, I believe that we stand a statistically better chance of getting better work from women. Plus, I'll be 'coordinating' with them closely. Which is something a lot of guys would bristle at.

I had done most of the drywall removal using a hammer that looks like it's for rock climbing. But today I used the crow bar, and I must say it's very effective. The crow bar gets back a little farther into the hole, and is much more persuasive in getting big chunks of the drywall out. Don't use it for banging. But you can stick the curved back part in there and jerk the wall toward you and you'll get a slab.

My son and I played a game of trying to throw balls into buckets in the back yard. He made up the game. He was a good sport. He put his baseball cap on backwards, the way the boys at preschool do. But I convinced him to put the bill forward, explaining the advantage of keeping the sun out of his eyes. But the hooks of the peer group are already upon him. For example the other day when I dropped him off at preschool he said he wanted me to take the sun hat back with me. This is the one with butterflies on it. He said, "Dad, other kids make fun of it. And it embarrasses me." I said I understood, hugged him, and removed the offending item forthwith. We'll get him a nice neutral grey one or something khaki colored.

The incident was really touching to me because it was the first time in a very long time that he has opened up to me and told me his feelings. He was honest. It meant, to me, that he felt he could trust me and rely on me. I was honored.

My wife rented a piano for the house. I don't know if I mentioned that. My son is in lessons and is picking it up quite well. Our rule is never to tell him to practice. He just plays because it's fun.

Oh yeah, I almost forgot what I was going to brag about. We were playing tic-tac-toe on the back patio, using chalk. I let him in on the draw secret. He flubbed it once, letting me win anyway, and thereafter played it effectively every time. So then I wanted to sit in a chair, and started telling him which space to put my mark in. He did that well. Then that was boring, so I suggested we play on a 4x4 grid. And because of the increased number of squares, I introduced the concept of a coordinate system to him (marking the spaces along the axes 1,2,3,4 / A,B,C,D). He picked it up without hesitation and correctly placed all my marks as I called them from the chair.

Next I am going to play Battleship with him. But I decided to explain it to him as 'Garden Wall.' Each person has some planters in their garden, and the object is to throw seeds over the wall, and be the first to plant seeds in each space in the other person's planters.

He supervised me while I got out the ladder and put some caulk into some cracks that had developed in the external surfaces of the window frames. Then his mom took him and his sister to the park. I came in here to rest the legs. The laundry is humming downstairs.

Normal leg day

I saw some friends today. Also I am pleased to say that my legs stayed "normal" all day, with no cramps or pains. "Normal" for me is not the same as normal before ALS ... the muscles can certainly get tired or send warnings more quickly now than they did before ALS. But they are still reliable, and if you treat them right, and heed the warnings, you are fine. But there was a time there during the glutamate self-poisoning that they were just always quivering and whining. My son is a good boy, very admirable, and my daughter is so sweet and cute it's incredible. Yesterday I tore out about half of the remaining drywall in the garage. About 15 gallons worth of rubble, I estimate. That's three buckets. Once I get the remaining drywall out, we'll have the contractor put in a new drain pipe, water supply, electricity, and gas line for the washer and dryer, which we will move from the laundry room into the garage. The good news is that the drain pipe, water supply, and electricity already meet right there in the corner where the laundry stuff will go. Then I'll complete the sheerwall in the garage, and we'll have the contractor drywall both the rooms. Then I'll build some racks in the garage, move all the junk from the laundry room into those racks, and install a heat vent and a phone line in the laundry room, hook up the new electrical outlets in the laundry room, install the recessed light there, build or buy another desk, toss up some curtains, and turn that room into a new study. Then one of the kids can use the current study, the room I am in now, as a bedroom.

Pins back in action

The legs are feeling much, much better and much, much more reliable after I ceased the glutamate self-poisoning. Yay!

I have considered going on a glutamate restriction diet, but I need to do some research on that first, because the tactic could be fraught with pitfalls. You would die without glutamate, so maybe the body would start making more of it, if I restricted my intake. And then maybe that reostat would get "stuck" at the higher level and my motor neurons would be degraded. Think of it as like dieting. So I'll approach the topic very carefully.

Meanwhile, I have the best local neurologist. Not only is he good, but he's the kind of person I like. This email I sent him should give you a flavor:

I got your voicemail responding to my question. And let me just say that you are the best. You are the fatal-incurable-disease doctor after my own heart. You are the FID doctor I would want to be. Thank the anaentropic chaotic-creative processes of the universe for you!

Sorry I was out when you called. Would it work to schedule a time? The conversation should be brief. I can even come down there if you want to see whether I am crawling on all fours in a slick of my own drool.

Today I take my son to his swim lesson about two blocks away. I will be able to walk there with him. Last week I would not have been able to. Last week I had to take him to and from the oh-so-nearby preschool in the car. Next week I plan to walk him to preschool as usual.

Ah, life!

Shaddup!

I am pumped that Tiberius and Jones and the other people previously mentioned seem to be checking the blog every now and then. Righteous.

But You Gotta Stop Putting Your Real Names, Real Web Pages, and Real Email Addresses In Your Loving Comments!!!

Use a snappy nickname, and don't put URLs or emails. Please.

That's part of the etiquette of this blog, capice?

Tonight I go to bed with no glutamate self-poisoning. Oh please oh please.

Little Miss Muffet

Sorry for bloggin' at ya again so soon, but I do it when I get the urge. Don't you? Anyway, I have come up with a theory regarding why my calves, sometimes thighs, and forearms and biceps too have all been seizing up and feeling grumpy since Friday.

Whey protein powder!

When I was shopping for protein powders after my diagnosis, I avoided the whey powders because I am allergic to milk. Not cheese or yogurt, just milk. Almost all the protein powders are whey-based, but I did find one which was not. The other thing which concerned me about the whey powders was the list if ingredients the package showed. One of them was glutamate. As you may know, glutamate is implicated in causing ALS nerve damage. I'm no biochemist, but the glutamate in the whey powders scared me. I don't have the non-whey powder container here in front of me. I will try to go get some today, just to read the label. But I recall checking the label and being reassured. Either because the ingredients were listed and glutamate was absent, or because (blush), no ingredients were listed.

The week before last, we had a guest. He brought his whey protein powder. He left on Sunday and forgot to take his powder with him. My non-whey powder ran out on, probably Wednesday, maybe Tuesday. I went without for a day, perhaps. But I decided to try his whey powder Thursday. Probably. Anyway, on Friday I noticed my muscles being a little grumpy. Saturday they were still grumpy and we drove for about an hour to visit my family. The grumpy muscles continued each day, including this morning, and are still with me. Each night I drank the concocted whey powder.

Today in the shower, the Eureka moment hit me. The package on the whey powder I have been taking says each serving contains 3290 mg of glutamate per serving. I am going to dump the whey powder in the trash! We'll see what happens!

11:09 AM:

OK, I went to GNC and got the Protein 95 powder, which lists glutamic acid 4990 mg, but no glutamine at all. Again, not being a biochemist, I don't know what happens to the glutamic acid once it hits my tummy, (does it turn into glutamine?) but as I said, I had no ill-effect.

I don't plan on using the Protein 95 until my cramps clear up.

Patio slug

So I have been either limping around, or moving reeeeeal slow for the past three days or so. Not sure. The muscles in the legs have been crampy. Sometimes a calf. Sometimes a thigh. Sometimes both. Once in a while it's a burning feeling.

As I lay in the sun on the hot concrete of the patio, pretending it was a miracle cure for ALS, it occured to me that my tough model of confronting ALS ("Use it or lose it!" "Not today, baby!" "Git some, git some, har-har-har!") might be too heavy on bravado. This stance was built around the idea that the encroachments will be gradual. But maybe what will happen to me, I thought, as I lay on the patio for the miracle cure, will be the Catatrophic Malfunction.

Maybe what will happen is that, after months of running up stairs two at a time, and no leg cramps, I will suddenly get several days of leg cramps. And after that I'll never walk again.

Maybe. Could happen.

The reason I have been limping around and moving soooooo slowwwwwwwly, is to give my leg muscles a chance to recover. I am taking no chances.

Once in high school gym class the coach had me wrestle a much bigger kid with bigger muscles. I must have told you this story already. Anyway, this guy moved sooooooooo slowwwwwwww that I was able to pin him. I didn't understand it. After the match, one of the guys told me that my opponent had some kind of disease that effected his ability to move. Young kids generally don't get ALS (you usually gotta be over 40), but maybe he had something like it. He was a good kid, I never heard him shoot his mouth off. You might like to think that he was some kind of dying angel, but he was also a teenage boy, and as most of you are aware, that is an ignoble status, full of lip, bravado, and air. In the instant after the match was over and I was kneeling there in confusion, the coach congratulated me, and the disabled boy muttered scornfully to the other guys "Ah, I could have got 'im."

There I lay on the patio, thinking to myself: "Ah, I can beat ALS."

I just need time. All I need is time. If I can get over these leg cramps (and it looks like I am getting better), then maybe the trajectory of the very long, very slow decline can be maintained. In which case someone will come up with a treatment, or a cure, before my quarter drops.

My dear friend came over and brought us dinner last night. She ate with us, and perhaps noticed that I moved around in slow motion. I didn't explain it to her. She brought my son a wonderful game called Rush Hour.

Fortunately, you can play the same game on the web

Have a listen to Air America Radio while you do it.

Anna

Bushra, I agree, always stay on the correct side of the crapper.

Anna, what interests her is that my first MRIs showed a freaking super-bright spot of presumed rot down the ALS pipeline, the regions of the brain usually degraged by ALS. Freaking super-bright. One could assume this meant that I was in for a hell of a quick ride to the grave, because the brain stew was bubbling. But so far, as I mentioned, I am still functional. Today and yesterday I have muscle cramps in my limbs, but I think I'll get over that. I am also tremendously sexy, if I haven't mentioned it before. The folks at the clininc said ALS almost never shows up on an MRI. But mine showed up super-bright, and they kept my MRI for a day just to get pictures of it. So anyway, I think what she wants to do is to write a paper about the fact that my MRI showed the ALS pattern ever-so-brightly. And I think she wants another MRI now, to compare with six months ago. And I think she'll want my functionality assessed by the local neurologist, so she can write:

"Subject's initially bright MRI now looks like this. Subject retains nearly normal use of limbs, plus extra-strong Kavorka field."

This morning I sorted my pills into the 8-day organizer. I even did some nailing in the garage with the pneumatic palm nailer. That project is coming along. It will take a while to complete, though.

I am trying to get a good shot of my son for my sister. She has some great shots of my daughter. So cute you would melt.

I found out that I have a blog fan, someone I know in real life, who checks my blog all the time to see if I am blathering. I posted on the 13th, and suddenly I get an email: "Yippie!"

How wonderful. I shout out to you.

I am reading a literary/historical biography of Dostoevsky right now. By Joseph Frank.

6 months

Happy six-month diagnosis anniversary!

I'm pleased to report that I am still very functional and the slide into the crapper has not yet commenced. The limbs-control situation is the same as last month. I went jogging with my son in the jogger stroller on Sunday. I was fine. I think that the major factor and perhaps the main factor for my soma coping with ALS is to get adequate sleep. When the kids have been waking us up I am an injured person. When they let us sleep I am a bunny.

I am still working on the garage, tearing out drywall and putting up sheerwall. And baseboards.

The radiologist who originally suggested to my local neurologist that I might have ALS wants to do another MRI of my brain. I am told she plans to write a paper about it. About my brain. I read somewhere recently that seven percent of people who have an MRI cannot complete it because the experience does not suit them. It doesn't suit me either, but I think I could go to my calm happy place for another scan. Too bad they don't let you take an iPod into the Tube of Hums.

My kids are fantastic. Magical, almost. I love them.

I have many things to do. The sunrises here are good.