Monday, April 05, 2004


My wife and I spent the day at the ALS clinic, a regular offering they have, where they have a bunch of specialists come in and look at you. They weighed me at 136.9 pounds with my shoes off and my pockets empty, but jeans and shirt still on. They told me I was down a pound from last time. I was at 137 while wearing a paper gown Jan 23, so that sounds about right. I credit that to no longer using the Protein 95 mix I had been using, and from the long, arduous Hawaii trip.

The most important measurement they have of your condition is the Forced Vital Capacity. That means how big a breath you can take and then exhale. The last time I was at the clinic I scored 94 percent three times in a row. That’s a percentage of expected capacity for someone my age, weight and height. As you know, I had been practicing for the rematch. However, when I was tested today, I think I psyched myself out. I scored 90, 83, 80, and 89 percent . The technician testing me told me there is a lot of wiggle room in the results, due to the equipment, and not to concern myself. Keep this in mind for later. So then we saw a nutritionist, doctor, occupational therapist, physical therapist, clinical trial administrator ... and respiratory therapist. She re-tested my FVC. At first I flubbed it by smiling and laughing a bit. It is hard to be serious when you have this plastic tube in your mouth and people are yelling “Blow! Blow!” I begged her to stop cheerleading, and asked my wife to step outside the room, because she makes me laugh too. Then I was measured at 101, 94, and 97 percent. I suppose that averages to 97.3 percent. But I like the 101 percent score best.

Also she did a negative pressure test, in which you suck hard. I think the measurement is in centimeters of mercury. I scored 115, 100, 110, and 115. She said these were very good scores. So I really, really suck. Then she tested my cough flow rate (take a big breath and cough once, really hard). I scored 650, 600, and 700. “I haven’t seen anybody’s cough rate that high for a long time.”

Several of the people I talked to were very concerned that I sometimes run five miles or more. To them this seemed extremely risky, and they begged me to tone it down. To the ordinary American, or to a jiggly tub of milkshakes and martinis like Thrill, five miles would be possible only because for the last 4.1 miles they’d be riding in an ambulance to the emergency room. But to someone who is used to running, like myself, five miles, when taken moderately, is like walking.

At some point the technician who had taken my FVC earlier in the visit came in and saw the new, higher scores. He’s quite a joker but he said that he would be in trouble because he had mismeasured me. I said not to worry, I had been psyched out and flubbed the test. “No, but it’s my job to test you correctly,” he said. “I will be in big trouble.” That bit about being in trouble was his joke. But you will notice that he no longer was saying that the drop from 94 to 89 was an instrumental variation. Now the difference was big enough for him to joke that he would get in trouble.

I wound up with a big bag of free samples of stuff that heretofore I associated with dying people: Ensure, Boost and other dietary supplements. Plus a calorie bomb from Nestle. I think I will try them all. In fact, a moment ago, I just had my first Ensure ever. I always associate Ensure with my dear friend Janet who died of cancer. So after I quaffed the beverage, I was sad for a moment that I had not toasted her. Then I realized that in her heaven right now, Janet is young and dancing with soldiers. The year is 1944 and Ensure has not been marketed yet. So she wouldn’t understand. Here’s to you, Janet.
Weblog Commenting and Trackback by