MDA families and Maker communities apply the DIY spirit to adaptive equipment and assistive technology
In 2010, Darrin Altman, diagnosed with ALS, faced a professional dilemma. His speech was failing, which threatened his career as a Spanish-language court interpreter. “My doctors at UCLA recommended an app to help me communicate, which worked OK, but not perfectly,” Altman recalls. After testing several alternatives, he decided that the solution was to create his own full-featured text-to-speech app, which he would offer to the world for free.
With no prior programming experience, Altman searched for a way to learn iOS programming and found several free online courses through Stanford University. In 2015, he submitted his app, Talk For Me — Text to Speech, to Apple. It was approved, and today Altman is refining the app’s eighth version. “The greatest feeling comes from emails I receive from all over the world thanking me for the app,” he says. “At times, I can’t believe I did this.”
The spirit of invention
Individuals with neuromuscular diseases and those who care for them are used to being problem-solvers. From adjusting to a new form of mobility to learning a new nighttime routine, taking on challenges as they occur is part of daily life.
Although there is a large market of adaptive equipment and assistive technology devices designed to help individuals with disabilities improve daily function and gain independence, it’s not always easy to get the product you need when you need it. Often, the challenge involves cost, points out Amber Ward, occupational therapy coordinator at the MDA ALS Care Center at Carolinas Medical Center.
The complexity of the market is also a barrier, Ward adds. “Not everyone is comfortable with technology. And, with so many products entering the market, many of them using cutting-edge technology, individuals might not be aware of or understand how to use a device that could help.”
Like Altman, many individuals meet these challenges with the do-it-yourself (DIY) spirit. Ward has seen families use Velcro, PVC, wood, fabric and other materials to make creative items to solve particular problems. As they say, necessity is the mother of invention.
Chris Bruce, 25, who lives with Duchenne muscular dystrophy (DMD), had no great fondness for his shower chair. “The hard footrests were uncomfortable, and his legs bumped the chair sides,” explains Tammy Bruce, Chris’s mom and caregiver. “Chris needed cushioning that could get wet, dry quickly and not mildew.” Trial and error mixed with creativity led Tammy to common swimming pool toys. “I cut pool noodles to fit the shower chair sides. Then I slid arm floaties onto the footrests to cushion his feet.”
Suzy Shealy, diagnosed with ALS in 2013, and Elizabeth Nazionale, Shealy’s daughter and caregiver, have engineered some low-tech improvements for their high-tech equipment. Shealy uses a sensor switch to control her tablet computer while sitting in bed. But when her poodles jump on the bed, the switch gets bounced out of reach. Nazionale solved the problem with a universal cuff intended to secure an eating utensil to the hand. She wrapped one end of a rubber twist tie around the switch and secured the other end to the cuff. “Now everything stays put on Mom’s hand,” Nazionale says.
Mother and daughter again put their heads together to power up playtime with Shealy’s young grandkids. Nazionale connected a small stroller attachment to the back of Shealy’s power wheelchair. The kids love it when their Nana tows them around.
Altman’s DIY efforts took him into the evolving universe of assistive technology (AT), which includes equipment, software programs and systems that help an individual improve or maintain their functional abilities.
For most people, taking on a serious AT project, such as building a sip-and-puff computer mouse, is beyond their skill level. But, there is a whole community of techies who apply DIY to electronics and computers. It’s called the Maker Movement, and within it there is a niche community of AT Makers who specialize in projects that help individuals with disabilities.
One such community is Tampa-based ATMakers.org, where founder Bill Binko, loves to introduce Makers to AT users. “The goal is to help Makers build customized assistive technology solutions that enrich individuals’ lives,” he says.
To find Makers, Binko focuses on high school STEM and robotics clubs, where students have 3D printers, laser cutters, soldering stations, experienced mentors and a real hunger to create innovative solutions. Binko often plays matchmaker across America, introducing Maker communities to those with AT needs.
Erica Hunt, of Elkhart, Ind., connected with Binko by posting a request on the ATmakers.org Facebook page. Her 5-year-old daughter, Ella, who lives with spinal muscular atrophy (SMA), had never driven her own wheelchair. Binko and his associates took on the project of building a control box for Ella’s power wheelchair that she could operate with two switches. Ella took the custom creation for a spin in May 2017. The result was a new world of adventures for Ella, and newfound friendships between the Hunt family and the Makers who helped them.
Spreading the DIY spirit
“Many Makers have created niche communities that use assistive technology to find, adapt, control or invent devices and tools that allow people with specific disabilities to participate fully in the world,” says David Dikter, CEO of the Assistive Technology Industry Association (ATIA).
ATIA, an organization for manufacturers, sellers and providers of AT products, is helping to support and promote the AT Maker Movement through their first-ever ATIA Maker Day in February 2018. “This year, we brought together DIYers and professionals to host a free event held to explore and feature new innovations to help those with disabilities,” Dikter says.
According to Dikter, supporting homegrown innovation is important to the disability community. “We need to reach up-and-coming DIYers, engineers and computer programmers and help them understand how AT affects the needs of those with disabilities,” he emphasizes. “That’s the grand scheme of things in AT.”
Contact MDA’s Resource Center
MDA’s Resource Center is an informational hub for families living with neuromuscular disease. Contact the MDA Resource Center at 800-572-1717 or firstname.lastname@example.org. MDA’s trained resource specialists are available Monday through Friday, 8 a.m. to 5:30 p.m., Central time, to answer questions and provide one-on-one support and resources. They typically are able to answer questions within 24 hours of a request (or on the next business day).
To learn more about DIY assistive technology, read Creative Control to learn about tech guru Jared Aronson, and check out Eight Innovative Assistive Technology Products for some tips on life-enhancing AT products.
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Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.