“I wondered why me, and why now,” Muto says about his diagnosis. He was working at an advertising agency and was planning to propose to his girlfriend, Yuko. She is now his wife.
After marrying, he was hesitant to ask for help from anyone but Yuko. But this approach proved exhausting for both of them. He realized he needed a resource to help him cope with the disease, but there was nowhere to turn. So he took matters into this own hands and launched an organization called WITH ALS to promote ALS awareness and research.
He also decided that he would not accept his fate lying down. He started working with experts to develop technology that would expand the range of what his body could still do.
Muto says of all the degenerative effects of ALS, he was always most fearful of losing the ability to speak. So he contacted electronics company Toshiba Digital Solutions, which was using AI to create artificial voices. Muto suggested that they combine their voice technology with an eye-tracking keyboard from robotics company OryLab.
The solution they came up with is helping him communicate now that surgery on his throat to prevent him from choking has left him unable to speak. He can now only move his eyes and fingertips.
Muto knows there’s an even bigger battle just ahead: total locked-in syndrome. As ALS progresses, patients eventually lose the ability to control even their eyes and eyelids, leaving them with no way to communicate.
Muto is trying to prepare for this state. He reached out to a neuro-analysis expert called Ogino Mikito at brain-wave technology company Dentsu ScienceJam, and asked him to help him create a system that would allow him to communicate using just his brain, which the disease leaves unaffected.
The two started developing an electroencephalograph, a device that reads his brainwaves, that could use AI to interpret his thoughts.
Those devices usually cost hundreds of thousands of dollars and require a specialist to fit them.
“We wanted to create something more accessible for ALS patients that can be used easily,” Ogino says.
Last December, Muto unveiled the fruits of their labor at an event called “Brain Rap.” He wore a slim headband with just three electrodes.
An AI program had been learning Muto’s language by reading his social media accounts and a book he’d written. It offered a choice of some favorites, and he chose one. The headband read his choice and fed it to an AI program which then created a rap using the word. Professional rappers performed it for the crowd.
In one of the rounds, Muto chose the word “life,” and the AI produced the lyrics: “The thrill of forging your own path makes life worth living.”
Outside of rap shows, the EEG headband allows the wearer to program five phrases and then select from them to convey basic needs.
But Muto and Ogino hope to integrate AI more completely in the future so the device can read brain more precisely and convey more complex ideas.
Muto's goal is a society in which everyone can live without limits.
“I'm facing life head on and appreciating the limited time I have despite everything ALS is stealing from me,” Muto says. “I don't want to spend my last days encumbered by a negative mindset.”
