Carl Phelps's daughter first noticed something was wrong with her father while at a football game in 2014. He was diagnosed with bulbar-onset ALS, which affects the tongue, mouth, and throat, in April 2015.
"For as long as possible, Carl continued serving as a basketball referee and a doting grandfather. But, his ability to swallow and speak deteriorated quickly. At former high school superintendent from Oklahoma (USA), he could at first write, type, and use sign language, but soon became unable to use his arms and hands. He had no way to ask for help, or tell his wife of 40 years he loved her.
The couple visited a clinic and learned Carl could use eye-gaze communication, an assistive technology that allows people to use their eyes to pick out words and phrases on a screen. However, clinic staff warned these products cost up to $30,000.
So, Carl and his wife Janice went to a support group meeting for people with ALS. There they learned a group of students from Oklahoma Christian University were building their own eye-gaze communication system called VisuALS at a fraction of the price. The students keep cost down by using off-the-shelf hardware and writing their own software.
The students needed someone to beta test VisuALS, and Janice and Carl agreed that he would be the trial user. Carl takes his job as a tester seriously, asking the students to add common phrases to make communication easier. He even asked for a pause button because ‘Sometimes I need to think.' Working with Carl has driven the students to improve the program to help others with ALS.
The impact on Carl Phelps's life is immeasurable. He can now ask for help again and has resumed activities he enjoys, such as playing chess with his granddaughter.
'Carl said one thing he feels is really important is he gets to tell me he loves me,' Janice said. 'I can’t begin to tell you how important it is to communicate with him. I would hate to think he needed something and he had no way to tell me.'"
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