Like Lou, living in hope

In the face of long odds, Neil Alexander refused to give up.

Suzanne and Neil Alexander

Bathroom. Hungry. Emergency. Let’s talk. Yes. No.

These six simple sayings may seem like limited examples of communication for a man accustomed to public speaking, but Neil Alexander thought they were what would be necessary to pass along messages to his family and caregivers after atrophied muscles robbed him of the ability to move and speak. The words were embedded in six squares on a computer application called iExpress, developed by Abhishek Sharma (CS’14) and Douglas Rew (CS’14) when they were master’s of software engineering students at Carnegie Mellon University.

Alexander was diagnosed in 2011 with amyotrophic lateral sclerosis, or ALS, also known as “Lou Gehrig’s disease,” which causes muscle paralysis that affects mobility and eventually such vital functions as speech, swallowing and breathing—while sensory and cognitive functioning remains intact. Cambridge University physicist Stephen Hawking, who has a rare, early-onset, slow-progressing form of the disease, is probably the world’s most famous living ALS sufferer.

Alexander planned to be among the 10 percent who survived ALS for more than a decade, and to aid him in the years ahead, he and his wife, Suzanne, worked with Rew and Sharma during the fall 2014 semester to develop iExpress for himself and for others afflicted with the progressive neurodegenerative disease.

Until his diagnosis, Alexander had been a senior executive and a member of the board of directors with the Pittsburgh-based investment advisory firm Hefren Tillotson. “I want to aggressively adopt technology,” Alexander told HCII faculty and students during a fall 2014 seminar. “My wife and I think we can create a new normal through the use of technology.” With assistive technology, Alexander had hoped to continue his work at Live Like Lou, the nonprofit fund he and Suzanne established at the Pittsburgh Foundation to raise awareness of the disease, provide support for families and fund scientific research. He also wanted to continue sharing in the lives of his two children, Abby, 13, and Patrick, 11.

Unfortunately, Alexander did not live to reap the full benefits of their work; he died of complications from ALS on March 24. He was 49. Life expectancy for those with ALS is usually two to five years following diagnosis.

To develop iExpress, Neil and Suzanne Alexander met several times with Rew and Sharma via Skype and in their O’Hara Township home to plan a communications system that would adapt to Neil Alexander’s changing abilities as his ALS progressed. Development of the system that became iExpress was integrated into the students’ Mobile and Pervasive Computing course, taught in fall 2014 by Daniel Siewiorek, Buhl University Professor of electrical and computer engineering and computer science at CMU, and Mahadev “Satya” Satyanarayanan (CS’79,’83), CMU’s Carnegie Group professor of computer science.

“We made the choice of not having too many options for iExpress,” says Sharma, who now works for the application performance management company Appdynamics in San Francisco. “Once you have one button, it would have been very easy to make more. But when the patient is in the latter stages (of ALS) and can only move his eyes, we wanted something that would still send messages quickly, and with context.” Eye movement usually remains unaffected or is impaired only in the very late stages of ALS.

With input from the Alexanders, Rew and Sharma designed iExpress with two methods of input—touch and eye-gaze tracking—so the app would remain useful as the disease progressed. Five of the six text blocks send “soft” notifications, transmitted to a caregiver’s smart phone as a regular text message, while one sends a “hard” notification, “Emergency,” delivered with an alarm sound.

iExpress also allows for continued patient-caregiver interaction. “We wanted to push the responsibility for communication onto the caregiver,” Sharma says. A family member or caregiver can ask questions, and the patient can respond with yes or no.

The students developed the message-sending and -receiving application by interfacing the commercially available software Eye Tribe Tracker—which uses infrared light to track where someone’s eyes are looking—with the iExpress software. The app was downloaded to Alexander’s Microsoft Surface Pro tablet and mounted near his work area. To optimize its performance, the students calibrated the pace at which Alexander moved his eyes and the position at which they rested to the application.

Also part of the design are the large text blocks that occupy about a third of a Tablet’s screen. Because no one’s eye gaze is perfectly steady and the ability for a person with ALS to hold a set point diminishes as the disease progresses, larger squares help ensure that one’s gaze settles where the user wants it to. An additional safeguard against sending unintended texts is a setting that allows the app to be programmed to the number of seconds a gaze must be held on a square before a message is sent.

But the key to the success of the project was enabling the user to emulate the click of a mouse strictly through eye movement, says Rew, who now works in software development at Microsoft in Seattle.

“Their software will take that ‘click’ and create a message and send it through Wi-Fi to the caregiver’s phone,” Siewiorek says. “There also is an app on the recipient’s phone that allows the individual to read the message and (confirm) that it was received.”

It’s this technology that Siewiorek hopes will lead to additional computer applications that support ALS caregivers. In the spring 2015 Capstone Design course for engineers, Rapid Prototyping of Computer Systems, CMU students worked on additional applications that they hope will extend the independence of individuals living with progressive conditions such as ALS, congestive heart disease and kidney failure, thus alleviating constancy of care.

“In the Rapid Prototyping class, we looked for ways to extend and improve what they had done,” says Siewiorek, noting that student groups are exploring ways to use eye-gazing technology to control the temperature and lighting in a room as well as the ability to scroll through an online book or newspaper, among other projects.

Eye-gaze navigational tools are already commercially available, says Sharma, “but they are very, very expensive and too customized to a person’s individual needs. iExpress is cheap and for the masses.” For the cost of Eye Tribe Tracker—$99—plus the iExpress app, he says, “anyone can have this.”

Rew and Sharma are exploring options to make iExpress more widely available. It works across platforms, unlike many existing technologies, which are confined to one operating system.

Although the rapid progression of Neil Alexander’s disease prevented the couple from benefitting from iExpress and other technological advancements, Suzanne says the precious time she and Neil spent in helping to bring about iExpress was worth it.

“It was a time commitment,” Suzanne Alexander says, “but we always said to each other that we would try to maintain our connection with the world around us. And the world needs more bright young people focused on these issues.”

—Linda K. Schmitmeyer is a freelance writer in Butler County, Pa., and teaches at the Point Park University School of Communications.

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