Inspirational Stories: Man with ALS Says ‘I Love You’ To His Wife
A man with ALS was able to tell his wife “I love you” for the first time in fifteen years.
Thanks to a digital solution created by Not Impossible Labs, Everlasting Footprint can share with you this inspirational and heartwarming story for ALS Awareness Month in May.
ALS stands for amyotrophic lateral sclerosis and is also known as Lou Gehrig’s disease. As explained by the ALS Association, ALS is a neurodegenerative disease that progressively weakens muscles, leading to paralysis and death.
Married in 1989, Don and Lorraine Moirs were husband and wife for six years and had three children, before Don was diagnosed with the disease. Don’s physical abilities became increasingly limited. In 1999, Don was put on a ventilator and was no longer able to talk.
Since Don couldn’t speak because of ALS, Lorraine had to use a letter board to communicate with him. It was a sheet of paper with the alphabet broken into quadrants so that she could track Don’s eye movements to figure out what he was saying. It was tedious, and it forced Don to be dependent on others to speak for him, so Lorraine sought out researchers to help Don find a better way to communicate.
Lorraine heard Mick Ebeling, founder of Not Impossible Labs, speaking on the radio. Not Impossible Labs is a nonprofit organization whose mission is to use “technology for the sake of humanity.” Lorraine contacted Ebeling with the hope of finding a solution for her husband. Javed Gangjee, volunteer for Not Impossible Labs, led the team to help Don regain his voice.
A device to help ALS patients speak with a synthesized voice isn’t a new invention, but Don was “hesitant” about technology, making this project a new and specific challenge. Don lost his muscle control to ALS during the time he would have been learning to use a computer. Javed realized he had to create a system that Don could easily understand. He did this by basing the program off the letter board Don was already using. After a series of attempts, Javed finally found a user interface that Don liked. A team from Not Impossible Labs taught Don how to use the device. Soon after, he was able to craft this love letter to his wife:
When Moirs spoke to his wife, he was not able to physically say the words, but the device used his eye movements to decipher what he was saying and the computer read it out loud for him. Along with this love letter, Don was able to say “I Love You, Lorraine,” for the first time in fifteen years.
Not Impossible Labs is still tweaking the device, but Don and Lorraine are excited for the new possibilities. Lorraine explained that Don “is excited to talk to me, his friends and kids more freely. And he doesn’t have to depend on me to do it. I will be able to drive and do the dishes and have a conversation with him.” Not Impossible Labs has named the keyboard “Don’s Voice” and made it available as open source software for PC.
Muscle weakness affects over 60% of ALS patients, according to the ALS Association, and Don’s Voice helps provide some independence from the disease.
Everlasting Footprint is excited for the Moirs family, and we encourage everyone to participate in ALS Awareness Month. Help the technology for Don improve, and support innovations created for those with ALS.