Progress is a word that typically conjures positive thoughts in most people. Technological progress. Making progress on a home project. "We're not there yet, but we're making progress." My diagnosis has forever changed my view of the concept. For me, progress is now the worst possible thing in the universe. Progress is the sum of all my fears. Many people fear change. In my mind, progress is the evil twin of change.
Most doctors refer to ALS in terms of its progression. A slow progression. A fast progression. Seems more like a regression to me. My physical abilities progressed forward from childhood to adulthood. I built them. I grew them. I achieved them. Now, my body is in a state of regression. As if unlearning all those abilities developed over 32 years. But perhaps regression just sounds too negative. Or maybe some other disease has the market cornered on it. Who knows.
Doctors can't tell me whether I should expect a fast or slow progression. And really, I don't want them to. I certainly think about it often. But now that I have some experience living with the disease, and seeing the progression of others, I think perhaps I'm somewhere in the middle. Not fast, but not 30-years slow either. Again, who knows. A coworker's dad diagnosed with ALS had his progression suddenly stop. Or at least slow down to a crawl. Doctors can't explain it of course. He's not getting any better, but he's been doing pretty well for several years. He's living proof that there is always hope.
I went to the ALS support group at the U of M clinic for the first time this month. At first I was terrified. I wanted to run screaming from the room. It was another big dose of reality confirming that all this is really happening. But it didn't take long to realize that everyone there, patients, family, friends, are just human beings like everyone else. I will never look at a person in a wheelchair the same way again. No one would ever choose that fate, so why do so many people get freaked out about it? Why should they avoid them or think less of them? It's not as if they're a smoker who makes the conscious choice to harm their health. Most likely, they had absolutely no choice in the matter. And if the afflicted person can deal with it, why can't they? Anyway, the most notable thing about support group was how varied everyone's progression seemed to be. You'd have thought it was the 'Miscellaneous Diseases' support group, a catchall for the diseases that have baffled all the doctors. "Um, we're not exactly sure what you've got Scott, but hey, there's a group for you people too!"
Many of you have commented that I appear to be doing well, that they wouldn't ever guess something was wrong if I hadn't told them. I've come to think of this time as 'The Salad Days' of my illness. Still able to do most things I'm used to, albeit with a little more effort. But I'm sorry to report that things are in fact progressing. In a very subtle way. Little things I notice here and there. Twitching that I hadn't noticed before. A bit more weakness.
My left hand and arm are noticeably weaker. The fingers on my left hand twitch most of the time, something my doctor pointed out. I hadn't noticed it. Of course my brain launched a full internal investigation trying to figure out if the doctor pointing that out really meant something. Does it signify something is around the corner? Or was he just casually observing? Very easy to get wrapped around a pole thinking about this kind of thing too much.
My right arm is showing some signs of weakness. Gets fatigued much faster these days. And my legs are getting a bit more wobbly. If you watch and listen closely, you can see that my left leg moves a bit 'funny', and I make a clomping sound when I walk. Sometimes when I'm walking, it feels like I've just stepped down from having walked on a treadmill for 30 minutes. You know that 'back on real ground' sensation you have to adjust to? Whenever I stand up after sleeping or sitting for awhile, my legs do this little 'shuddering' thing, like they're trying to shake off some tiredness. Other times it feels a bit like when you're trying to run away from something in a dream, and you're legs won't go as fast as you want them to. I try not to think about it that way though. Those dreams are too scary.
By far the most startling change I've noticed is a bit of weakness in my jaw and throat. I get tired chewing sometimes, and swallowing is just a little more of an effort. I get some twitching in my face sometimes too, around my eyes and mouth. Nothing that gets in my way of eating mind you. My appetite is still pretty darn healthy (I've actually been gaining weight). But the thought of losing my ability to eat and speak is by far the most terrifying aspect of my progression. I'm willing to bet most folks with ALS would say the same thing. Take my arms, take my legs, but for the love of Pete, don't take my ability to communicate with the world!
But on the plus side, my breathing capacity was unchanged from last fall at my checkup in February. They have a machine that can measure the percentage capacity based on your age, height, and weight. I was at 112%. I get out of breath easier sometimes, and I need to take deep breaths once in awhile to feel better, but no real difficulty. So I got that going for me, which is nice. And hey, I put together a big office cabinet from IKEA this past weekend, so I'm still good for something!
Mentally and emotionally, things are about the same (see my 'Dead Man Walking' post for more details). Daily rollercoaster. But for a few days last week, I've seemed to be on auto-pilot. Just living and doing, not thinking too much about it all. The inevitable wrecking ball always shows up to tear things down a bit, but on the whole, I feel good about my life. I'm doing the things I want to and should be doing. I try to live each day with hope for a long future. Focused on the imminent delivery of our little girl, and trying my darndest to be supportive of Kirsten through it all. Cliched as it may sound, she is indeed my rock. I'll be forever grateful that the forces of the universe brought us together. I do love her so.