I feel the need to explain some things about my mouth because things are different with ALS. I bite the inside of my cheeks and my tongue much more since I’ve had ALS. I suppose those muscles have weakened, too. I wear a bite splint when I sleep to help prevent me from biting my cheeks so much. At night or during naps my mouth dries out so much that the dryness goes deep into my throat and leaves my tongue and the walls of my mouth feeling like cardboard. I’ve never experienced dry mouth so extreme.
I’m amazed by how much our tongue does for us now that mine is no longer working very well. I can no longer touch my tongue on the insides of my cheeks. If I chew gum I have a difficult time keeping it in one piece because my tongue can’t maneuver it around. My speech is also challenged because of my tongue.
I can barely put my lips together to kiss or to blow a kiss. I can no longer blow out a candle or suck liquid through a straw. Food still tastes good to me but about the only things I can eat are pudding and Jell-O because I’m afraid of choking. I take only one pill orally with Jell-O and the rest of my pills are ground up and put through my feeding tube. I’m not really sure why but not being able to eat doesn’t bother me too much because I still prefer to sit with my family during dinner.
Once again having great care and lots of love makes my struggles smaller.