Much has been building up (both inside my head and external events) behind the dam of my reticence. High time for some smoke signals from Camp Joe.

The big story on the doorstep is my imminent PEG tube installation. PEG stands for "percutaneous endoscopic gastrostomy". It's essentially a clear plastic feeding tube that connects the interior of my stomach with the outside world through the abdominal wall. I'll still be able to eat with my mouth, but this will allow food to be injected into my stomach by a big syringe (about the size of a paper towel roll tube). The flexible feeding tube will initially protrude several inches from my side, but will eventually be replaced by a closable valve about the size of a silver dollar.

So how do I feel about it? Well, that question has had a spectrum of answers over the past year. I knew I was going to probably need one about a year ago, and I was pretty down about it. What kind of perverse disease takes away your ability to eat?!? (And to breathe, for that matter!) That should be out of bounds. A do-over. You give me this wasting disease, and you deprive me of my primary method of delivering nutrition to my body? Come on. We need a new rule in the rule book.

From time to time I'm still struck by the injustice of the symptom package that accompanies this disease. But, over the past year, my swallowing has deteriorated, my energy budget has diminished, and my mealtime anxiety has burgeoned. I'm not the only one with mealtime anxiety, either. Cole warned me to take small bites and confessed his fear that I would choke at dinner a few nights past. Every time I sputter or cough at a meal, all conversation stops and all eyes are on me. Even Ryan and Pat sense the concern of Linda, Cole and Hannah, and, like little emotional chameleons, they get upset, too.

So, when you add all that into the equation, the appliance seems less like a violation, and more like a relief. And when I think that the tube may let me be present for longer in the lives of my wife and children (by whatever measure that might be), it takes on the role of life buoy. It's curious (to me) that this same change in my life (the PEG) that was a year ago such a depressing specter, is now such a welcome deliverance. I'll miss swimming and it'll be a drag having it, but it's just a tool I'm using to get me through this dark part of my life. And in that sense, I still believe I'll emerge into the light again, and so the PEG tube is only temporary. That helps. My biggest trepidation about the whole thing now is the procedure itself; my FVC is probably in the high 60's to low 70's (percentile), and shocking your system or subjecting it to major healing demands is usually a bad thing in ALS. But I believe it's clear that I'll need a PEG, and not doing it now incurs more risk for the future either way, either from choking or delaying the procedure.

As far as my downhill slide is concerned, I am feeling an odd sense of detachment (at times) from the symptoms. My speech is definitely worse, my energy is waning, and of course, swallowing is going the way of the dodo. My right hand seems to be trying annoyingly hard to catch up to my left hand in terms of loss of strength, but my left hand losses seem to have leveled off. My legs are weaker, and that makes my balance less dependable. This has led to a fall at the mall and a spill in the backyard. But even as I undergo these changes, I get the feeling that I'm somehow observing them more than enduring them. They obviously impact my life, but that impact doesn't seem to register as much as the sheer explorative curiosity of witnessing the changes and their ramifications. Maybe a better way to say it is that the observational aspect is proportionately way more significant than the experiential aspect, at least with respect to my expectations. You'd think that dealing with a limp right ankle would be a central focus, for instance. And, although it probably is, I'm amazed at how much time I spend being interested in the adaptations that the ankle necessitates. It's (evidently!) hard to describe. But the silver lining is this: I spend much less time than I expected lamenting the loss of function and much more just watching it go by without any ravaged emotions or painful memories. I pronounce that a Good Thing.

I'll try to post here when I'm "back on my feet" after the surgery. Stay tuned, and get jazzed about gene therapy. A significant step was made in another neurodegenerative disease, and the techniques used in that research may have applications for ALS.

Replies: 11 comments

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Gene Shalit, no. Gene Rayburn, well, ya just never can tell.

Posted by joe @ 06/26/2004 11:58 AM CST

I'm jazzed about the Gene Therapy. Thank goodness it isn't Gene Shalit Therapy though.

Posted by joey @ 06/26/2004 01:41 AM CST