What Others Have to Say

Sometimes, your parent may want to talk to you, but you don’t want to talk to them. We all know being a teenager is tough. Even without being impacted by ALS, this is a time of figuring out who you are, who your friends are, and where you fit in your family. These are big questions and can make you feel like “checking out” and being far away from your family member living with ALS. This is very normal—it is tough to know what to say, or what to ask.

What can you do? While it is OK to not want to talk about it, you need to talk sometime. Make sure you talk and ask questions at some point. As hard as the questions can be, they may even bring you closer.

You were just like any other family, but now you have a family member with ALS. Things are not the same, and that can be hard for everyone. Living with ALS requires your family to develop new routines and new ways of doing things — to create a “new normal” and live with ALS, not in spite of it. In the words of a 17-year-old, “Everyone has their thing—this is ours.”

What can you do? Here are some examples of ways that other families have adapted their routines and adjusted to living with ALS: - If you were a camping family, do short day trips or bring others along to assist. - If you love the beach, rent a sand wheelchair. - If you went to the theatre, arrange aisle seats.

What ways can you think to adapt your family to a “new normal?”

Absolutely! In fact, it can be very helpful to talk to a coach, a teacher, or a mentor. Sometimes this is an ideal solution because these adults are removed from the immediate situation, but they are still available to lend a listening ear to let you talk things out. We will hear from Ian later about how he talked to his coach, which was really helpful.

Yes! The ALS Association chapters across the United States are staffed with care coordinators who can help talk about ALS with your family. This can be extremely difficult, so we devote an entire chapter to it later in the guide.