4:30 a.m. - Thursday. Luther slept with me last night (yay!) because his hospital bed developed a leak. Like a waterbed but an airbed!! There's a huge dip in the center. He's already up, I'm up too.
It got me to thinking: ALS is a weird disease.
The weird part comes in because of the sense of normalcy settles in. What I mean is something happens - arms get weak. Hands stop functioning. Legs now weaker. Arms now useless. Coughing gets worse.
In between each of the things I just listed is time. A span of time where we get used to the change and learn how to live with it. A false sense of the new normal occurs.
Each new normal seems to last several months. We settle in to a routine. There's always, always a sense of looking over my shoulder, though. Waiting for that other shoe to drop. What will the next change be? Will I see it?
The shoe's dropped. The next change has occurred. The "tone" of Luther's cough has changed. Is this a big deal? It didn't seem like it at first.
I've talked about this before, but just a little ALS refresher: ALS attacks your muscles and nerves. Once the nerves die, they no longer talk to the muscles. The muscle then stops working and wastes away.
(Weird side note: as the nerves die off, they twitch like crazy trying to find the muscles they're supposed to be talking to. It's crazy watching them under the skin. Like drunk ants are running through his veins. Once the twitching stops, the nerve is dead and the muscle won't work and begins wasting away)
The tongue is a muscle. The throat has muscles. This is how you talk and swallow.
For people with ALS, they lose the ability to do both of these. For Luther, this has been a slow process, which is awesome. Lately though, this cough thing has me worried. The spit you usually just swallow without even thinking about isn't swallowed so easily for Luther. This means it gets backed up in his throat. Have you ever had a cold and you can feel that junk draining down the back of your throat? Ugh. This is what it's like for Luther.
Before, he would cough it up. Now, he can't anymore. He coughs like crazy, trying to get it out and he can't.
We've ordered a cough assist machine. It's this contraption you put over your face, it blows a huge puff of air in to your lungs then immediately forces that air back out of your lungs, taking the mucus out with it.
The last change I remember was the loss of his right hand. His arms/hands now hang at his sides like dead weights. We got used to that. The loss of strength in his legs has been pretty gradual. He's weaker but he can still walk to the bathroom. I have to get him up, out of chairs or out of bed. At some point (he's guessing 3 - 6 months, but who knows?) I'll have to use a lift to maneuver him around. We have the lift. It's a big 'ole thing. It's tucked away for now.
Am waiting for the cough assist machine. Wish we had it now. It's awful to listen to him cough. It's odd though, his coughing is actually less. He doesn't cough as much as he used to. It's just that when he does cough, it goes on for a longer time and sounds more forceful. Grosser, to be honest. And more painful for his lungs and throat.
Ok - I've been up rambling about coughing for the last half hour. Back to bed for a while.
Update on rotten mood from last post: You know? Life just goes on. My brain still feels a little fuzzy. A wave of tiredness will wash over me like nothing else. But I just plunk along and eventually, that moment subsides. It doesn't seem to go away but it's lurking in my toes instead of my entire body. The perspective that gets me out of bed and keeps me moving forward is I have to take care of Luther and I'm here to make his life comfortable and as happy as possible. It forces me out of the funk and in to reality.
Life moves on.