I’ve been really busy lately with everyday life. I’ve had some cramping days, but for the most part I’ve been busy with non-ALS things. I do have an appointment at Emory next Friday. Other than that, as long as ALS stays calm I’ll just have the normal struggles of leaving for house showings and taking showers. Dad brought dinner by today that Gracie cooked. She’s been cooking about once a week for us and it’s been a huge help. I’m not sure if I’ll go out with Mom Saturday or just have a visit.
Our last Saturday seeing a movie was rough. I was having a bad ALS day with leg spasms and fatigue, but I thought it might end. I wanted to see my favorite film duo Vince Vaughn and Owen Wilson in, The Internship. I’ll look for it to come out on DVD because ALS kept me distracted. The wheelchair was uncomfortable and I was cramping. Julie went with us and sat by me. She noticed my discomfort and said we could leave but I stuck it out. I did fore-go the usual after movie thrift shopping and then to Mom’s to visit. The cramping was subsiding but the fatigue had me useless. Tony was already there to get me so I just said hello to my Aunt Cindy, then we left. I put the car seat back as far as it would go and tried to relax on the way home.
I told you in the last post that I will get more into the cough assist and suction machine. Coughing can become more difficult with ALS. Like a laugh, everybody needs a good cough. I’m very glad I haven’t had much trouble with mucus because I still can’t suck it out. The suction was so weak it will only suction water out of a cup in drops, so this makes it of little use against throat glue. (That’s what I call it.) I’ve never had it before. It doesn’t seem to be coming from my sinuses or from my lungs. It seems to originate deep down in my throat. It looks clear with white streaks and has the consistency of children’s craft glue.
When the very back of my throat, I mean farther back than I’ve ever been aware begins to feel dry, this is when I’m usually going to have the glue. So we keep a humidifier going in our room and I keep the humidifier on my ventilator turned on so my throat stays moist.
A couple of days after getting them I felt that indescribable feeling down deep in my throat. It can’t be seen, only felt. I put the cough assist on my face, Tony helped hold it to keep a seal. It pushed in a deep breath and it sucked it all back out. There was nothing to suck back until close to the end, in my throat. I could feel and hear what sounded like mucus. Like a bad smokers cough. It worked like a charm. It had pulled that from deep in my throat to the top and ready for suction. I put the tube at the back of my tongue/top of throat and disaster strikes. The suction wasn’t strong enough to get it out. I probably overreacted, but sorry I have a fear of choking to death by sticky throat mucus. It very slowly sucked a little out but not near enough to get it all, so the rest was pulled out with my fingers and spitting the best I could in Tony’s hands. What a man. He stayed calm, and when I finished he washed his hands and brought me a drink. Crisis over.
Wendi is bringing a new suction machine when she brings my sip and puff ventilator attachment. She mailed me a pink chin strap. I love it. It’s a style most people don’t like, claiming it doesn’t hold their mouth closed. To me it’s more more comfortable, and holds my mouth as closed as it needs to be. I can see how some people would just open their mouth in their sleep and need something tighter. Now I have a more comfortable and prettier chin strap. Yay!
The chin strap and the cough assist are great. I will feel much better when I receive a machine with proper suction function. In the meantime, my room and ventilator are keeping me moist. This is where I feel safe.
I’m going to help fold a dryer full of towels Tony just put on the bed. I will return with tomorrow’s news.
Until then, take care,
This article was written by April