January 26, 2007

Short Entry: About Joe

After finishing Yurtle the Turtle -- Kate, I started him about two weeks ago and have worked on him almost non-stop since then, with maybe three or four days off for drying times -- I came up for air and spent a lot of time with Joe today, when I wasn't too sleepy to see anyone. We went out to supper tonight, at a place called Hops after their "home-brewed" beer (which I don't touch but Joe likes occasionally). It was supposed to be a mini-celebration -- for Joe after a long spell of getting his "life onto his laptop" and for my finishing my turtle, but it turned out to be a near disaster.

It started like any other dinner out. We ordered sandwiches and when they came, munched on the fries first. Joe picked up his hamburger, then put it down and decided to eat it with a knife and fork, realizing that it would be too hard for him to bite and chew the usual way. I noticed that there was a lot of the dreaded lettuce packed onto the bun. Joe has never been able to leave a morsel of anything behind on a plate; no matter what, he's a member of the clean plate club. Tonight, this worried me. "Joe, how about you skip the lettuce," I said. "You don't need to eat it just because they put it on your hamburger. You know it gives you a hard time..."

But he just went on plowing through it, claiming that it was fine to eat it because it was in big crunchy chunks and not leafy. I took a bite of my club sandwich, relieved, and said something about how iceberg was good for something then.

Shortly thereafter I heard Joe gurgle and I looked up. He was bent over his plate with his hands up, coughing. "Joe? Cough it up. Keep coughing. That's right." I stood at once and went to his side of the table. It was hard to interpret his gesture. With his hands up it looked like he meant to be saying, Don't touch me, leave me alone. But when I asked him, he indicated, managed to mouth, I can't breathe! At that, I gave him a whack on the back, trying to dislodge the lettuce or whatever he had gotten stuck in his throat. "Stand up, Joe! Stand up! Can anyone do the Heimlich?!" I called out. He was too big for me to get my arms around but I was certain that one of the many men standing at the bar would be able to help out. A man rushed up to do so...

Just then, Joe looked up and said, "I'm okay. It was lettuce. I got it out. Thanks."

I sat down again. The waitress asked Joe if he needed anything, if he wanted something else to eat, a glass of water, anything at all. He was apologetic, said it was just the lettuce, he had made a mistake, couldn't swallow the lettuce, not their fault...I looked up at her and said, He's sick, he can't eat lettuce. It's nothing you did. A glass of water would be good.

We sat there for a long time, not eating, we never did eat, though we brought the meals home with us, just trying to calm down. Apparently, my thwack on the back had been what he needed to bring up the lettuce in his throat. Next time, if that doesn't work, I'm going to try the Heimlich myself anyway, see if I can do it after all, at least if no one else is around. It would be better than doing nothing and I think a version could be done from the front if I can't do it from behind. I'd figure out something!

The problem is that his tongue is nearly paralyzed so he can't manipulate food to bring it from the back of his throat to chew it better so if it gets back there too big or too dry he has to swallow it, willy nilly. And if it is too big, it gets stuck and must be expelled, forcibly sometimes. He tries not to let anything big go there, or to take any big bites, and in general he doesn't, but even small foods can get caught, if they are dry or the wrong shape, and he can't predict what will get lodged until it happens. When the food is at a certain level, he can reach back and pull it forward with his fingers, doing what most of us would do with our tongues, but just a bit farther back and it is swallowing time, whether he should or wants to or not. That's when the problems arise.

Apparently, this is typical in ALS, and cause for much panic. Also a reason why many patients switch to pureed foods or an all liquid diet, when eating solid foods becomes too scary or too difficult. I don't think Joe is quite there yet, but he has been asking for a lot more soups than before, and I think is enjoying them more than he does solid foods, simply because they require less caution and effort to eat.

Posted by pamwagg at January 26, 2007 09:18 PM


Dear Pam,

Sorry to hear about what you and Joe went through over dinner. I guess you'll both be prepared for the next time, though, of course, I'd rather it not happen again. Unfortunately Joe's condition will get worse, so there will probably be a few more scares along the way but I think you're both stronger than you realize and you will figure it out as you go along. Though I wish you both had some online and offline support to take some of the pressure off. I remember giving you the address of some online group, though I've misplaced it. Do you ever go there for information and support?

Posted by: Kate K. at January 27, 2007 03:42 PM

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