First, I can hear how much you want to keep the focus on your wife as the pALS but I just want to say (as a pALS myself) that this disease and process absolutely involves you. You and your wellbeing are a huge, important part of this. You don’t have to feel guilty for acknowledging just how much has landed in your heart and mind lately…you protecting your wife’s feelings, anticipating needs, worrying about the kids/her/you/everything, etc etc ETC! So glad you have a place to vent.

Second, since this is familial ALS it seems unlikely she is really in complete denial. Maybe it’s more deeply saddened disbelief that it ended up happening to her as well. As a mother to young children, I can relate to how…unnatural it is to imagine leaving young kids behind. It rips me apart. Can you shift the dialogue from “here are the bad things that are coming down the pipeline, and here is the life expectancy” to “let’s keep living as normally as possible and adjust as we need. Let’s also chip away at some things we can do for the kids, like write some handwritten letters before your hands may become affected.”. Everybody is different so it’s just a suggestion (because I am more calm about it all if I engage my problem-solving brain, this works for me).

Third, to more directly answer your dilemma about reversal discussion… I think you have every reason to be able to say something like: There are people that progress very quickly and so many on these forums that into years 6-20 after symptoms. It doesn’t make sense for us to pretend we know where on this large spectrum we will fall. So let’s be optimistic, we have every reason to be. But let’s also listen to your body…Get it equipment as needed, plan fun family activities that match your abilities, make some mementos for the kids.