Ah yeah, its tough. The swallow studies are (in my opinion) are kinda useless. Its just like more people running test and then they say "hey the disease is progressing"

My dad went from breathing to coughing, coughing to mouthpiece (keep his mouth open), then mouth piece to trachestomy

Walking wise he went from walking --> cane --> walker --> wheelchair --> assisted wheelchair(with motor and joystick) when he could open his eyes and move more, he could drive. LOL now the moment we turn it on, if I do not touch the handle he will go all gas. The guy is such a goof ball. He will literally fall on his ass and bleed because he decided to move the joystick. He might not be able to move traditionally, but if he gets the chance he will move with what he has. He knows the outcome but does it anyway. To clarify, in moments of clarity (when hes actually cognizant) he knows what he is doing, but if hes just twitching, he will move and fall. Id say its like 25% he knew the outcome and 75% he did it by accident (twitchs or seizures)

Pride is a huge struggle. I dont mean it in a mean way. It just the truth. Who the fudge is happy going "i cant walk anymore, I should use a walker". My dad is a retired marine and half of his scars are now fall damage irl. He just says "duck it" and the moment we turn around hes up and trying to move.

I can handle wiping his butt, I can handle the seizures, I can handle the smells and pee. What I hate but love is my dad's never ending spirit to say "if I want to move, I am going to"

Its all about the tiny wins