Kristen, the nurse from MGH’s ALS House Call program, came today for her trimonthly visit. All in all, it went pretty well. I don’t feel like I’ve had a lot of progression. My neck still causes me pain but we’re going to try a new brace that may help with that.
My respiratory therapist had come out a couple of months ago to adjust the settings on the BiPap and that’s worked out pretty well. My SVC (slow vital capacity) was 46% back in March. I had a difficult time with it today, so we weren’t able to get a read. Kristen did revisit the possibility of getting a feeding tube placed sooner rather than later before the surgery becomes an issue with further reduced lung function. It’s something to think about, but I’m not ready to commit just yet.
My swallowing is still generally pretty good. I avoid (for the most part) the foods I know I have issues with. I get fatigued pretty easily with a lot of chewing, but my swallowing itself isn’t bad. I’ve had a few instances of having some trouble with thin liquids, and I find it much easier to take my myriad of pills with pudding or yogurt, but all in all I still do well.
The glycopyrrolate is still keeping secretions under control. My other meds include baclofen, mexiletine, tizanidine, gabapentin, and riluzole. I take citalopram to keep me bubbly and zolpidem to catch some Zzzz’s. Also, edibles on occasion, because whatever works. My newest med is metoprolol, which is a beta-blocker, because my heart, much like all 4 of my dogs, gets the zoomies sometimes and apparently loses track of the correct rhythm.
Some exciting news is that I have been asked to take part in MGH’s expanded access program for Amylyx’s AMX0035. Because my symptom onset was too long ago, I was not eligible for the clinical trial. So being able to get access through this program is pretty exciting. I’ll write more about that once I’ve had my screening visit. Also, because radicava has now been approved in oral form by the FDA, Kristen asked if that’s also something I’d be interested in trying. I’d been approved for the infusion formulation a while back, but since there wasn’t a lot known about it at that point and the infusion process and schedule was not only invasive but time-consuming, I opted not to move forward with it. Now that it’s approved as an oral med, it’s definitely something I’m considering.
Rise Against ALS! 