I haven’t physically been to clinic at Mass General in a year, thanks to COVID. Last April and July I had virtual visits with Dr. Berry via Zoom. In September and December a nurse from the ALS House Call program came out to the house for an in-person visit. She came out for her third visit today. All in all, things are pretty stable. My neck muscles are getting a bit weaker and that’s causing some pain throughout the day as I try to keep my head up straight and not do the bobble-head thing. But I’m getting better at using the neck brace to give my muscles a break, especially when I’m working. My speech is still good. I get raspy when I’m fatigued, but I’m not slurring my words. I haven’t noticed any major changes with my ability to eat. I stay away from the foods I know give me trouble and may cause me to choke.
Because I haven’t really had any problems eating and I’ve been able to maintain my weight pretty well, I haven’t even considered the idea of a feeding tube. But apparently because the surgery to place the tube requires general anesthesia, they are cautious about doing it once your breathing score drops below a certain level. Apparently that can be dangerous. My score was 98 the last time I was physically in clinic, in January 2020. A year later during my second home visit in December 2020, my score was 52. Today it was 46. So Kristen, the House Call nurse, talked to me a bit about the possibility of getting a feeding tube. It’s a possibility that I find hard to wrap my head around at the moment, because I am able to eat and drink. I suppose it’s one of those things that’s better to have and not need than need and not have. And apparently there are patients who get them because their breathing score warrants it, but they don’t necessarily use it. You can eat and drink normally even with the placement of a feeding tube. But then you just have this weird foreign object protruding from your body, so that’s weird.
Anyway. Kristen said I don’t have to make a decision right now. I have some time to think about it. So think about it is what I’ll do. In the meantime, I’m going to have the respiratory therapist come out and tweak the settings on my BiPap and I will try to use it more throughout the day.
I’ve been having a lot of trouble sleeping lately so we’re going to try to figure that out. I’m averaging about 3 to 4 hours a night…occasionally less, rarely more, never enough. I’m going to try some CBD, and if that doesn’t do the trick, I will talk to Dr. Berry about other possibilities. Other than that, there were no medicinal changes.
Rise Against ALS! 