I am Terri Weiler

a family member of someone living with ALS


My dad is my hero. I've always been a daddy's girl.

My name is Terri Weiler and my dad, an Air Force Veteran, was diagnosed with ALS at the beginning of Covid-19. The news was devastating and I did my best to pretend it wasn’t happening. My dad is my hero. I’ve always been a daddy’s girl. We have a lot in common and he has always been so much fun to be with. He and my mom helped me raise my daughter. He became like a father to her and she formed a very special bond with him and even named her first-born son after him. I always joke that she is their second (& favorite) daughter.

My dad is the strongest man I know, who would do anything for anyone. He is the man who would shovel his driveway (a huge corner lot), then go around and shovel the single mom’s driveway across the street, the older man’s down the street, the person who just had surgery and so on. He took everyone’s garbage cans back after the garbage truck came and always made sure that the neighbors were okay and offered to help them in any way he could, even taking some to the grocery store, hair dressers or to doctors appointments. He has never asked for a thing in return.

My dad is a barber by trade and he is the ultimate handyman who could fix literally anything. If he couldn’t fix him himself, he always had a friend who could. He was also a self-taught woodworker and created the most beautiful things. He was always doing something. The man just couldn’t sit still.

Now he can’t cut the grass anymore or do the things he would normally do around the house. He can’t cut hair, fix things, help the neighbors or do his beloved woodworking anymore. He has always been the type of person who loves to be on the go but unfortunately, ALS has taken that from him as he can no longer drive.

He is slowly getting weaker. He can no longer button buttons, cut his food, raise his hands, wash the upper part of his body, wash his hair, carry things, etc. The VA has sent a few things to make these things easier but, in my eyes, it just isn’t enough. But then again, every family probably feels that way.

It has been somewhat of a slow downward hill, but it isn’t a pretty hill. To watch someone so strong become totally dependent on others is one of the most difficult things I’ve ever done.

My mom is a whole other story. She has always been a private person, and never asks for help. She doesn’t accept it well either. A couple of months ago, a man up the street cut their grass and she was so upset and told him not to do it again. I do take days off occasionally and take my dad out for drives – one of his most favorite pastimes and that gives her a day off to do what she wants. But she is exhausted already and this journey is just beginning.

My dad has a good outlook and says every day is a good day because he is on this side of the earth, I wish I could share that optimism.

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