How AI Helps Give ALS Patients a Voice

By Pragati Verma, Contributor

In the late summer of 2013, Stuart Moss, an IT innovation manager at Rolls-Royce, learned his father had Motor Neuron Disease (MND), also called amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. “At the time, I told my dad that this is complicated, but I am sure that this is something we can get over [with],” says Moss.

But he soon realized that MND was inevitably fatal, with most patients dying within a year or two of their diagnosis. Doctors expected his dad to lose control of his muscles, affecting his ability to move, speak, swallow, and eventually breathe, following similar symptoms of previous patients.

“It’s like being trapped in your own body. You can see and hear what’s happening to you, but can’t speak or participate,” he says. One of his most painful moments was when his “father, a social worker who made a career by giving voice to those who couldn’t advocate for themselves” was no longer able to speak.

Moss, however, was not willing to give up. To him, it was a simple choice: “We could either wait for the worst to happen or do something about it.” He imported an eye tracking system to enable his father to communicate with the world by typing and clicking through a computer with his eye movements. “I can’t cure the disease, but I can make it slightly more bearable to live with,” he says.

Moss lost his father on Christmas Day in 2014, but he decided to keep going with the quest to make MND patients’ lives better. He began by setting up the Brian Moss Foundation in his father’s memory and provided eye-tracking units to MND patients in Derby, UK.

Tech Solution for a Medical Problem

Fast forward to 2019. Moss is spearheading Next Generation Think Tank, a project Rolls-Royce and the MND Association established to explore technologies that can support MND patients. It has an ambitious vision: Help patients, even after the disease robs them of their ability to move, speak, eat, and breathe.

The Next Generation Think Tank has a vision: To help patients, even after the disease has robbed them of their ability to move, speak, eat, and breathe.

Realizing that Rolls-Royce couldn’t do it alone, Moss tried a unique approach. He began by gathering representatives from 20 leading technology companies in its innovation lab in March where he outlined a vision: “What if being diagnosed with MND is like winning a lottery, instead of the long-protracted death sentence it is today? Think of Iron Man suits you see in movies. What if MND qualifies you to get one of those and make you stronger, faster, and more intelligent?” he asked when proposing that the tech companies participate in this digital innovation.

Courtesy of The ALS Association

“Every single company there agreed to offer their technology and help us,” he adds. While Intel is bringing its experience of providing “Hawking experience” technology to British physicist Stephen Hawking, Dell Technologies is providing AI hardware, and Microsoft is offering its voice-enabled digital assistant technology skills.

Several ideas are already shaping up. One of the prominent projects aims at providing verbal spontaneity. Today, MND patients have limited and cumbersome options to communicate. The most common way is the eye-tracking technology similar to what Brian Moss used, where patients move their eyes to point at letters on a screen, thereby spelling words. For example, to say the word “Yes,” they first look at the letter Y, then E, and finally S. “The whole exercise is quite laborious for both the person with the disease and the person they are trying to talk to,” says Moss.

Teams at Next Generation are working to improve the process through voice assistants like Siri, Alexa, and Cortana. Moss describes how it will work: “Imagine someone walks in and asks a person who can’t speak a simple question, such as, ‘How are you doing?’ [An] AI-enabled voice assistant will transcribe the question and look at patients’ past conversations to check how they would normally respond.” It will offer three possible responses on a screen, such as “I’m good,” “I’ve been better,” or “Not bad.” As the patient selects one option with his or her eye movement, the system will say it in the patient’s pre-recorded voice, so that it doesn’t sound robotic.

According to Moss, the Next Generation Think Tank is also tackling projects to help people who have started to lose their voice as well. “We realized that for people losing their voice due ALS/MND, it is a gradual progression and they need help during the decline too,” he says.

When Rivals Join Hands

Building technologies that help people with disabilities and medical challenges is bringing several business rivals together. “We knew that technologies we need exist in various companies that traditionally compete with each other,” says Moss. To his surprise, these competitors readily agreed “to work together selflessly.”

Commercial competitiveness disappears when you are working for a greater good, according to Dayne Turbitt, senior vice president of Dell Technologies’ Enterprise business in the United Kingdom and Ireland. “Technology is a funny business. We might be competing with each other, but we call a truce to solve a problem like this before we go back to competing again,” he adds.

For Turbitt, the most exciting part is the opportunity to solve a problem that seems impossible to solve. “We love to support our customers, but more importantly we love to support a good cause that inspires and challenges our team,” he says. “I don’t think we can cure the disease, but we have ideas, skill sets, and knowledge around engineering that can be applied to find solutions for these problems,” he explains.

“…until we find a cure, the IT industry will be quicker and better than the medical industry in developing assistive technology.”

—Stuart Moss, IT innovation manager, Rolls-Royce

Moss agrees. “Yes, MND is a medical condition, but until we find a cure, the IT industry will be quicker and better than the medical industry in developing assistive technology,” he says. Encouraged by Turbitt’s enthusiasm, he is hoping to see many more companies follow Dell Technologies’ example and help MND patients survive and “watch their kids grow, attend their graduations and weddings.”

It’s my own mission now, says Turbitt. “MND is such an overwhelming disease and it’s so easy to give up. If we can make [MND patients’] lives easier through our technology, then it’s our responsibility to do so.”