In October 2014, Jennifer Driskill noticed that her father was having trouble speaking, often times slurring his words. She talked to her mom Janice Phelps about it who then brought her concern up to her husband, Carl Phelps. That November Carl’s sister died of ALS, (Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease, which is a motor neurone disease that causes rapidly progressive muscle weakness. It effects nerve cells that control the muscles that enable you to move, speak, breath and swallow) and he immediately knew that he also had ALS. Phelps at first refused to see the doctor, knowing his prognosis he didn’t want to spend his time at the doctor’s office.
Finally in April 2015, Phelps visited the doctor and learned he had bulbar-onset ALS, which affects the tongue, mouth and throat, making it difficult to swallow, speak and breathe. According to the ALS Association, patients with bulbar ALS tend to have a lower life expectancy because of the progressive struggle to breathe.
At first Phelps could do all the things he did before but soon he was unable to use his arms and hands. The couple visited a clinic where they learned he 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, his hopes were dashed when he found out the cost for the product, $30,000.
In January, they went to a support group meeting for people with ALS, where they learned a group of students from Oklahoma Christian University were building their own eye-gaze communication system at a fraction of the price, a project called VisuALS. The students — who plan to sell the product for $3,000 — keep the cost down by using off-the-shelf hardware, such as eye trackers and PCs, and by writing their own software.
When Phelps learned about the product he knew he had to be involved and VisuALS needed someone to test the product. Phelps helped them by asking the team to add some common phrases to make communication even easier, some suggestions he made include: “These are happy tears;” “I feel great;” “I am afraid;” and “Please, put a cover on me.” Phelps even asked for a pause button so he had time to think.
Working with Phelps has helped the students improve the program to help others with ALS. But it also changed how they view their roles.
“This product shows how diverse engineering can be and that you can have an influence in people’s lives,” said Josh Bilello, an electrical and computer engineering major. “I can go to work every day and feel I can make an impact.”
This product has changed Phelps life, giving him an opportunity to be able to communicate and resume activities he enjoyed before, but most important he is able to tell his wife he loves her!