And now our weekly special report. Our focus today is on a rare disease called amyotrophic lateral sclerosis, or ALS. In Taiwan there are about 1,000 people afflicted with this condition, which gradually destroys the nerves. For ALS sufferers, there will eventually be the day when they can no longer move their mouths to form speech. Taiwanese researchers are racing against time to perfect eye-tracking, brain-wave and other technological solutions that would allow people who can''t move to communicate. The technology is still in testing, but researchers at National Taipei University of Technology believe they are 80% of the way to a functional system. Here at the lab of NTU’s Graduate Institute of Immunology, professor Chu Ching-liang is busy teaching his students. In 2017, Chu began experiencing numbness in his right arm. At first, he thought it was a condition known as frozen shoulder. After lengthy exams, the doctor informed him that what he had was ALS. ALS causes patients to lose all muscle function in the late stages. With no way of communicating with the outside world, they appear to be in a vegetative state. In 10% of patients, the disease is inherited. For the other 90%, the cause of the disease remains unclear. A cross-departmental research team at Taipei Tech invited Chu to work on a project under development: a smart assistive communication device for patients with ALS. He was invited to test out the device, as well as to join the research team. He accepted at once.Electrical engineering students have turned up at professor Chu’s office. They have brought “smart eye-control” equipment that was developed by their department. At first, the system is able to detect Chu’s left and right eye movements without a hitch. But then, when he tries to make a selection by moving up and down, the system slows and stops reacting. Lien Kuang-yuProfessorIf you want this thing to become practical, you have to put it to clinical use – have it be used by the patient at home in their everyday life. In terms of reliability, this system still has a ways to go. Previously, the testing of eye-control devices was limited to the laboratory setting. It’s only been in the past year that researchers had the chance to work with actual patients. Stepping out of the laboratory has meant grappling with the unique circumstances of each patient, which could lead to data inaccuracies.Chu Ching-liangPatientWhen I see these students, working so hard together on this research, I feel that we’re all working toward a common goal, and we are no longer so lonely. It makes me more confident, and gives me more energy to face this reality.At the home of fellow patient Chen Chun-chih, a test is underway using a different assistive device known as a “brain-computer interface.” Liu Yi-hungProfessorShe wants to make a fist with her left hand, to express that she wants to answer “yes.” We try to identify the brain activity of that action. If we can identify it successfully, we can determine that she means to say yes. The computer will output a “yes.”Made especially for those with ALS, the brain-computer interface can even be used by late-stage patients. With this pioneering work, researchers had no precedent to consult as they developed the system. They have faced many challenges along the way. Liu Yi-hungProfessorActually, the brain-computer interface has been in development for 20 years already. However, you’ll find that over these 20 years, all the research papers on the topic overwhelmingly focus on healthy subjects when conducting their tests.A present, Chen can still communicate by slowly writing characters on a tablet. Nobody knows when he’ll start to lose more motor functions. The day that ALS patients lose movement in their eyes is the day that they’re confined in their flesh, cut off from the rest of the world.Lin Yung-yiTaiwan MND AssociationEvery day we are waiting, more or less. It’s such a pressing issue but we can’t just… publicly stand up and say, “Why can’t you hurry up?” Technological progress is just not that simple. Liu Yi-hungProfessorActually we are also under a lot of pressure. Because patients…in their hearts, patients are all thinking the same thing. They also don’t know how long they will be with us. Last year we received data on 12 patients for analysis. One of them has already passed away. For Taipei Tech, making custom brain-control interface systems for ALS patients has been a focus since 2015. Much of the funding has come from social fund-raising efforts, as well as assistance from the Taiwan MND Association. In 2018, with government R&D funding, Taipei Tech was able to start developing smart eye-control systems, speech synthesis and other systems. But the government subsidies lasted only one year. Liu Yi-hungProfessorIf the industry doesn’t take over from here, it would be unfortunate, because we’ve worked so hard to...
