Student researchers work with ALS community to evolve DuoRhythmo music app for everyone

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For Dr. Alper Kaya, the darkest days of his life happened about 10 years after he found out he had ALS. Based in Turkey, the ophthalmologist felt fortunate in that the disease progressed slowly, after the initial diagnosis of Amyotrophic Lateral Sclerosis in 1990. He could still perform surgeries, help patients and play classical guitar – one of the constants in his life, ever since he was a teenager. After about a decade, he lost the use of his hands to do those things he loved. He lost hope, too. At the time, it felt unbearable. But with the help of his daughter, he found other ways to make music again. Assistive technology gave him the ability to blow into a MIDI wind controller (“a hands-free electronic, breath-powered instrument”). Later, when he couldn’t close his mouth, he found other music-based software to respond to eye tracking and small head movements. He’s got a YouTube channel where he’s uploaded some of his compositions. [caption id=attachment_177843" align="aligncenter" width="1024]https://blogs.windows.com/wp-content/uploads/prod/sites/2/2022/11/Updated-group-photo-from-May-2022-1024x739.jpg A video call on Microsoft Teams showing Microsoft advisors and Danish students working on DuoRhythmo[/caption] The design problem Buxton was interested in solving with the students was how to point and trigger things that could create music using only eyes or tongues, depending on the disabilities a person may have. Buxton and the students embrace the notion of “universal design” – such as wheelchair ramps to buildings, which came from the disability community yet benefited the general population. “For this project, the approach began with accessibility to a specific community with special needs, but the solution – likewise – brought the benefits to the general population, providing a demonstration that with appropriate design, we can have inclusive design with minimal compromise,” Buxton says. Knowing that they wanted as many people as possible to use the app – and still be valid musically – the team approached the project from the perspective of an orchestra conductor focusing on the percussion section instead of the musician that needs fingers to play the guitar or piano. “You don't have to articulate every note to make music. You can also shape and initiate phrases,” Buxton says. “You can start these percussion patterns and as you can gradually modify them, you can conduct them and change the tempo. You can start to do amazing things that are highly creative. The key thing is the choice of the patterns that you can bring into the sequence and what you can do with them, like a DJ.” In addition to assistive devices like those involving eye tracking, the app can incorporate input from a touch pad, touch screen, mouse, foot paddle or joystick. “It's inclusive in many ways,” Buxton says. “It's not exclusively designed for people with disabilities.” But ALS testers were essential in creating the app. Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, helped connect the students with their future users during the development of the app.Cummings, whose mother passed from ALS in 2005 after living with the disease for five years, volunteered with ALS Ontario, where she became chairman of the board. She also sat on the board of ALS Canada and after completing board terms in 2013, she became the Alliance’s new executive director. Microsoft already had a presence on the Alliance Innovation and Technology Advisory Council and made the introductions to the students in Denmark. “I can't say enough positive things about them. They were great to work with. The students were really diligent about knowing what they wanted to do and how they wanted to proceed, and they were really interested right from the beginning with involving people with ALS so that they felt like they were actually meeting a need as opposed to something that they had dreamt up,” says Cummings, whose organization was looking at the patient journey over time and what technology they might need throughout their journey with ALS to improve their quality of life. “A lot of technologies support the very basic physiological needs, but the more interesting ones to our group of people living with ALS falls into the higher order of Maslow's hierarchy of needs: music, art, appreciation of things that improve their quality of life that aren’t directly related to their ability to cope with the day-to-day. So, the more nuanced parts of life they felt made life worth living. And it was right at the convergence of that time when we were looking at how to define that matrix that we were introduced to this fantastic team.” Cummings adds that the collaborative nature of the app also helps counter the social isolation that often results from the disease. “Once people have their basic physiological needs satisfied, life is much more than that,” says Cummings, who appreciates how the app is available to so many people through the Microsoft Store. “Anything that's built into something that's available publicly is hugely helpful. ALS/MND is a fairly rare disease, and so the exposure to students at the university level when they're working on products and services in technology to improve quality of life really helps others gain an awareness of our disease. Once someone's aware of something, they take it with them for the rest of their life.” It's important, Cummings says, for businesses to include people with disabilities as they develop products. “At any of our education seminars or our conferences each year, we see what Microsoft is bringing in the future and how they're working forwards on things like natural voice and translation,” she says. “All of those kinds of things aren't products on the market yet, but they give people a lot of hope that they're going to be able to keep their identity and be able to communicate as they progress through this disease.” Top image: Photo by Frej Reosenstjerne at Danish Sound Day event showcasing DuoRhythmo in May 2022, with original illustration by Bernardo Henning

 

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