Grandma said she’s sick, but she looks fine to me. She has a disease called ALS that makes it hard for her muscles to work. My whole family is learning new ways to help her, but I miss how things used to be.
Amyotrophic Lateral Sclerosis (ALS) is a very challenging disease that affects all types of people: parents, grandparents, aunts, uncles, and friends. Of course, it also has an enormous impact on the children who love those who’ve been diagnosed with ALS. Children bring kisses, hugs, caregiving, and joy to those living with ALS, but at the same time, those children may be experiencing confusion, fear, and worry as they watch the person they love face a scary disease.And Love Speaks helps to navigate those difficult feelings and conversations, to help children understand that their loved one with ALS is the same person inside, and to maximize quality time together ensuring every moment counts.