u/MyIntrospection

Some days, some moments, are better than others when trying to get through the days when seeing my husband lose his ability to do the things he used to enjoy. Or even needs to do- harder to shower, barely walk. I tell myself, “It could be worse” because it could be (and probably will be), then I try to reason how is that even a bar to set for living life. I’m just trying to stay in today and not let my mind wander to the future. Some days I think maybe he’ll not have to endure some of the things that are later stage with ALS. Maybe this is magical thinking and a coping mechanisms for me right now because of the fear of days ahead. Are there some stories where PALS don’t have to endure such bad things in the end?
I tell myself “live for today, not the fears of tomorrow” but some days the reality sets in a little harder than I want.

Today I must’ve spent too much time worrying about what’s down the road for my husband and me as his ALS progresses. Some days I feel connected to the day (and it’s mostly a good day) and other days my mind wanders forward and I get so scared. Scared about things that may or may not even happen. He is within his first year of diagnosis and it seems to progress slowly, although what seems ‘slow’ also has been a somewhat steady progression… He has lower limb onset and most mobility is with his PerMobil wheelchair. He can still stand upright for a little while and transfer on his own but it’s becoming more of a struggle for him. I worry if I’m going to be strong enough for him- mentally. And am I going to know what to do as we approach harder times. I love him so much and don’t want to let him down by being mentally weak.
Did your instincts kick in? Does love compel you out of your fear of the future and have you act?
Right now he calls me his caregiver but it doesn’t seem as if I’m doing much more than a wife does, what I did Before his diagnosis. Make dinner, laundry, clean, help get his clothes. I’m
just scared for the future and trying to find happiness in the time we do get to be together is hard because I get distracted on the unknown reality that lies ahead. Guilt for having a good day. Guilt for being able to move like I do, and he can’t. Ugh…

Bless you all warriors of ALS.

Hey all! my husband has a solid collection of original mini action figures.. Kenner.. a pretty thorough set. I’m posting here for the first time to see what interest there may be in it. I’m lacking all the details but wanted to put some feelers out there for him. He would like to sell it all together. Is there interest or buyers for a set? Please ask any questions and I’ll ask him to help me answer them. :) I realize I‘m missing important details but please ask anything you’d like to know.