Marianne Has ALS

My mom visited at the end of May and asked if I was in pain. Generally I’m not in physical pain, just the occasional muscle stiffness or UTI. I do feel an acute loss over the erosion of my relationships. It’s hard to be a mother, partner, or friend when communicating is hard / frustrating / takes soooo much effort /energy.

Things are a bit better now that I have my eye gaze working. The eye gaze is like having a text conversation in real time….a text conversation with grandma….who is 80 and has a flip phone. I’ll take Grammy text speed over nothing any day of the week.