Brushing my teeth is getting more difficult because I can’t open my mouth as wide as I used to. I was using a battery-powered toothbrush before but the movement and vibration of the brush caused my jaw to spasm and the only way I knew to stop it was to bite down on the handle which really made it worse. Mark would then turn the toothbrush off allowing me to relax enough for him to pull the brush out of my mouth. I ended up switching to a children’s toothbrush with a smaller head so Mark has more room to maneuver the brush in my mouth. ALS is slowly creeping into every crevice of my body.
Heavy Jello is how one ALS caregiver described her husband’s weakened body while trying to move him. When Mark sits me down he has to make sure I won’t fall back, forward or side to side while also making sure my feet are in a supporting position, my arms are on my lap and my neck is secure. It’s a lot to remember for what seems like one simple task.
Change is difficult, especially when we lose something we’ve relied on for our whole lives, such as our voice. When I told you in an earlier post that my voice was completely gone, well that was when I was sick in April but it came back a little and I can still squeak out a few words that are understandable. It may take my listener several attempts before they guess the right word but most are very patient and willing to wait. When I’m not in front of my Tobii we’ve worked out some sign language for yes and no. Two blinks is ‘yes’ and one blink holding my eyes shut is ‘no’. It works really well until nighttime when I get tired and my eyelids get heavy because then my yes looks more like a no. We also use an alphabet card to spell out a word and a card with frequently used phrases. All of these aids help me communicate but having a little bit of my voice back is the best aid of all and I am so grateful for it.