But technology is now making it easier for victims of ALS to overcome what the fatal disease takes away.
ALS robs a person of their ability to move their muscles -- a slow paralysis. And it happened to Pauline Reed.
"You kind of look at her and you kind of say, 'whose body is this?' because it can't be your body because she was the strongest," said Shelley Buhler said of her mom Pauline Reed.
Indeed she was. In 1973, Reed was King County's first ever female firefighter. She was part of the national ski patrol, and patrolled for 30 years.
A diver too, there wasn't anything Pauline wouldn't try.
"Don't ever tell her you can't do that because that was an invitation for her to prove you wrong," Buhler said.
But ALS is different.
"It just doesn't seem right for anyone to go through the stages that it takes you through," said Carrie Scull, Reed's other daughter.
For ALS victims, including Reed, she dreaded the eventuality that she won't be able to say goodbye, at her own time, in her own voice.
"Most terrifying was the knowledge that I would soon be unable to breathe unassisted, leading to the loss of speech and the ability to eat or swallow," Reed said.
But Reed was trained to speak with her eyes with a new process called Tobii.
The Tobii is a full-fledged Windows computer with cameras that track the movement of Reed's eyes.
"Like when you are driving down the road at night and you see an animal in the road, with their lights the eyes flash back, that's kind of the same concept," said Christine Bengen, who trained Reed on the process.
The technology fingerprints and remembers the user's eye and their patterns.
"That dot is her eyes. When she's on what she wants, she starts to type with her blink," Bengen said.
Users can write e-mails, read an e-book, surf the web, make phone calls -- even Skype. But most important it gives them a voice, albeit an electronic one.
"Although I hate losing my voice, I'm so grateful to have been given to say 'I love you' to my family and friends," Reed said. "To be able to communicate with one's eyes, which are the mirror of the soul, is a huge gift," she said.
Editor's Note: Not long after we interviewed Reed for this story, Reed said goodbye to her family one last time. She died in her sleep two weeks ago. Our thoughts are with her family.