Bestfriends, Thank you for sharing your experience. Although we are supposed to accept the uncertainty that comes with ALS, I have always struggled with it. And now having that extra layer of "uncertainty" in why exactly he died, when we all were relying so heavily on Nurown getting approved in 2021 and fighting to get him that treatment, was adding to my grief. You sharing your experience helps me put a little bit of that uncertainty to rest. I read up on PEs and it seems that some people can survive them, but a comment made earlier by Tillie has given me a lot of comfort. A body ravaged by ALS is so weakened that he just probably had no chance to survive the PE, no matter what I could have done.
Since he already had trouble chewing and swallowing and had said he didn't want a feeding tube (we discussed it the day before he passed), I guess all things considered, a sudden death like this was probably the best thing for him instead of slowly starving/dehydrating until the end, even though it was hard for me and my daughter to experience.
We are 2 weeks out from his passing, and I've given back the bipap and Hoyer lift (they were rentals), the shower buddy loaner back to the ALSA, and I also donated his manual wheelchair to the ALSA loaner closet to help another pALS. I threw out the urinary bottles and the raised toilet seat (I didn't think those would be sanitary to pass along). Although at the time it felt a little bit like I was moving on too quickly, what I really realized was that getting rid of all the trappings of the ALS has helped me to remember the man he was before the beast struck him. The last year for us was so hard, and with quarantine and home schooling, and working from home, I was admittedly too over burdened and could only see what was right in front of me, namely, the ALS. I've spent the last week grieving the man he used to be, instead of remembering him as my pALS. And I think I'm feeling better because of it.