According to a story by The Japan Times, Masatane Muto relies on a power wheelchair to move around. He is hardly in control of his own body and requires help to even take sips from a straw. The 31-year-old has amyotrophic lateral sclerosis, abbreviated as ALS. Muto was diagnosed four years ago, and has since founded an organization that promotes ALS awareness, created a clothing brand that emphasizes fashionable and functional style, and done much more for the ALS community.
Amyotrophic lateral sclerosis is a progressive neurological disease that kills nerve cells in the brain stem, spinal cord, and brain. Muscles, as a result, eventually weaken and this leads to the loss of voluntary movement and control. The condition is, unfortunately, typically fatal because those who develop it eventually lose their ability to breathe. This is due to the wasting away of chest muscles.
There are two types of ALS: sporadic and familial. Sporadic ALS is more common, and makes up to 90-95% of diagnoses. Familial ALS is believed to be inherited. All races and ethnicities are affected by ALS, but the illness is more common in white men between the ages of 60-69. Men, on average, are more affected than women. To learn more about the condition, click here.
Diagnosis Turned into Inspiration
Muto first started feeling numbness in his left hand and began having difficulty using chopsticks or pens.
“I started having symptoms of ALS when I was 26. That was when I was working in advertising communications, a job that I felt was my true calling. I still clearly remember how shocked I was that I became ill in my prime,” said Muto.
About a year and many doctors consultations later, Muto was diagnosed with ALS. On his two-hour trip back to Tokyo after receiving diagnosis, Muto reflected.
“Even if it was just pretending to be tough, I wanted to return to Tokyo having put my feelings behind and looking forward,” said Muto.
“I remembered that since my college years I’ve had this vision of turning ideas for making the world a brighter place into reality. When I was a student I planned events based on this vision, and after I joined an ad company I was also making such ideas take shape as my lifework. Then I got to thinking that my current mission as a person with ALS was to help realize ideas that would make the future of people with disabilities brighter.”
He channeled the negative energy into positive by realizing this was an opportunity to do good for the ALS community. He decided, partly because he needed to put on a brave face for his loved ones, to use the diagnosis and help others who also faced this difficult situation.
“The only thing I know how to do is communications,” he said. “So I started by using the power of communications, like informing society about ALS — an illness that doesn’t even have a remedy yet — and raising funds for research and development of medication.”
The next year, Muto launched his project “WITH ALS,” which was turned into a general incorporated association by 2016.
A Tech World
Muto’s goal is to use technology in order to boost the quality of life for those with his condition. This use of technology can additionally be applied to other conditions as well. In order to do this, Muto has partnered with an engineer at OryLab Inc., Kentaro Yoshifuji.
Muto is somewhat of Yoshifuji’s guinea pig to test the user-friendliness of the robot, OriHime. The robot that Yoshifuji developed is just over 20 cm tall, and has a camera, speaker, and microphone that enables users to communicate with others that could potentially be very far away.
The robot is used by Muto to “virtually” attend meetings and events across the country that he is unable to physically attend. OriHime allows Muto to see the venue as well as speak through the robot. The robot also has the potential to be used for telecommuting, which could give people with disabilities more opportunity and freedom to perform their jobs.
Another important technological asset Muto is working on involves glasses. The glasses that Muto uses double as a wearable technology device called Jins Meme. Jins Meme lets users take control of electronic equipment as well as software equipment, this includes smartphone cameras, air conditioning, and lights, all through the use of eye movements.
“With ALS, the movement of the eyes is said to be the last to go, so we’ve developed an app utilizing this Jins Meme device,” said Muto. “I have been conducting performances as a DJ and VJ with these glasses and my eyes. By doing so, I am helping advance this technology so that the app can be improved and better support people in their daily lives.”
This development is huge, not only because it’s amazingly cool technology at play, but also because it could give ALS patients the freedom to do the same things they loved to do pre-diagnosis.
Muto explains, “Whether with ALS or not, everyone should have freedom of expression. We are developing this app technology to enable people to communicate based on the idea that daily communication is a standard for all.”
It’s clear that Muto is making strides in the ALS community and is working selflessly to try and improve the lives of others that have his disease even after he has passed on.
There are options for those with ALS, including undergoing a tracheotomy to prevent respiratory failure when the time comes. Some choose not to go through with this procedure, but Muto has decided that he will.
“Now that I’m in this situation, I am painfully aware of the dilemma as to whether to live or die, whether to go through with this life-prolonging surgery or not. That’s why I want to make the best of this realization and continue transmitting information that will help as many people as possible have hope for the future,” said Muto.
Muto has published a book called “Keep Moving — Living without Limits,” where he details his real-life experience with ALS. Some of the proceeds from his book profits go towards the Serika Fund, a fund that gives money to research efforts for ALS.
Among Muto’s goals include performing at the Tokyo Olympics and Paralympics as a EYE VDJ performer. He wants to potentially collaborate with a wheelchair dancer or blind drummer as well.
“I don’t think anyone can live alone. I’m an obvious case because I can basically move my eyes only, so what I need to do is work with others to express a world of our own,” he said. “No matter what disabilities people have, they can connect without any borders when they’re on stage together. It’s my dream to participate in the 2020 Games.”
To read more about Muto’s achievements in the ALS community, click here.