Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I kill spend my time. So I thought I would share a day in the life of me with ALS.

Monday

6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.

6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.

7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>