About a week ago I was doing puzzles on the floor with my daughter. She has been inviting me to join in puzzle projects and other games. My awesome wife brought me a smoothie she had made for me. She's been doing that a lot recently to try to put some pounds back on me. I think it will help, but I think that it will add fat, not muscle. And that's OK too. I feel like I've lost about five pounds of muscle from my once proud butt.
My stunning wife brought me the smoothie and my daughter wanted to know what was in it, and after I showed her, she urged me "Drink it!" The thing about the involuntary laughing with my ALS is that little 'stresses' (hard to even call them that) can set off laughing. One stress that I often have around my kids is that I love them so much. Seeing them gives me a strong positive emotion, and that can lead to laughing. Misbehavior can also make me laugh.
I often have mild stress when eating or drinking around the kids, because I worry about gagging or choking. Combine that with how cute and lovable my daughter was when he said, "Drink it!" and you may understand that I felt the urge to laugh. I stupidly took a sip of the smoothie. I should have put it aide for later.
I wound up laughing and drooling, and laughing and drooling more so because of the stress of trying to correct this lack of control. I tried to wipe my mouth, but I had no Kleenex. I am so weak that I couldn't gracefully rise from where I was sitting on the floor. It would have involved a dramatic struggle. I looked around for an exit strategy. I wasn't making eye contact. After a bit, I managed to say "Can you ask Mommy for a Kleenex for me?" While I was saying that, I made eye contact with her, and I saw a look of concern, almost pity on her face.
She went and got me a Kleenex, but that one look is seared in my mind. The last thing in the world that I want to do is create fear and confusion in my kids.
Left grip is 21 pounds (20, 21, 19), right grip is 75 pounds (70, 75, 70), left leg balance is 4.14 seconds, and right leg is 30 seconds.