When it became difficult to move his hands and fingers, Josh Gentry installed smart switches in his home that he could control from his computer. When he started to need a walker to move around, he automated more switches, programming them to turn on and off at preset times.
Gentry, who is 34, was diagnosed with ALS in 2014. Often called Lou Gehrig’s disease, ALS is a neurological disorder that affects the muscles, making it progressively more difficult for patients to walk, talk, swallow, and eventually breathe.
When he received his diagnosis, Gentry was working as a systems engineer at Cisco Systems in St. Louis. He soon moved back home to Fort Wayne, Indiana, to be nearer to friends and family. And that’s when he immersed himself in home automation.
Now, nearly five years after his first symptoms showed, Gentry can move his neck and legs a little and has lost mobility in his arms and hands — but technology has helped him maintain a level of independence that’s unusual for people who have lived with ALS as long as he has.
He cannot speak out loud, so he uses specialized eye-tracking software to communicate, glancing at letters on a virtual keyboard to type out phrases that are then spoken aloud in a synthesized voice. He has set up systems that allow him to control lights, ceiling fans, the TV, and the thermostat with flicks of his eyes. “I love being able to control the temperature because I don’t really do well when I am cold,” Gentry told me via email.
He says his career as a systems engineer prepared him for the life-changing project he’s taken on at home. “My professional experience has taught me to tinker and problem-solve,” he wrote to me. “In my job we would come out with new technology all the time and I had to learn it.”
His father’s background as a construction contractor comes in handy, too. “I end up being his hands and his fingers for him,” said John, Gentry’s father. He helped install the smart switches and put in the wiring required for Gentry’s automations. “And if there’s high-tech technology, he tells me what to do,” John says.
The automations make life easier for Gentry and his caretakers alike. A scheduled text reminds his nurse to bring his medication every weekday afternoon. Preprogrammed buttons that can be activated with Gentry’s eyes make his speech-synthesizing software speak commands aloud for Amazon Echo devices to pick up. During the one-hour window on weekdays when he’s often alone at home, he can sound an alarm that texts his nurse and family members if he’s having trouble breathing — an occasional side effect of his tracheostomy.
Gentry’s tinkering goes beyond making his own life easier. “Some of my favorite automations are things that I don’t even use,” he said. Smart switches in the living room, kitchen, and bathroom control different lights when single, double, and triple-clicked. (His wife loves these switches, he told me.) Gentry dispenses advice to his nurses, too, helping them cut the cord or set up their smart TVs. “He can do things I can’t do,” Gentry’s father said.
Most people with ALS survive three to five years from the disorder’s onset, according to the National Institutes of Health, and life becomes progressively more difficult as individuals lose more motor functions. But Gentry can communicate with friends and family — and with me, in long, detailed emails sent over the course of several weeks — and spend chunks of time on his own.
Beyond helping him preserve his independence, Gentry’s constant tinkering helps keep him sharp and engaged. “I honestly believe that without the technology, he wouldn’t have lived this long,” his father said. Gentry is always coming up with new ideas, and stays connected to the outside world using a custom browser that he can control with his eye movements. A dashboard he assembled arranges his favorite sites into a large grid so that he can navigate to his favorite sites — Facebook, Twitter, CNN, YouTube — with a glance.
“I want to be a productive member of society, not cast away and forgotten,” Gentry wrote to me. One way he gives back is by helping others living with ALS take advantage of technology the way he has. In 2016, he presented to an ALS support group about the conveniences of his smart home. “The independence of being able to control your home is priceless,” he said in the presentation. On Reddit, he dispenses advice about smart-home devices and software, and occasionally about living with ALS.
Gentry’s father, John, said the relative rarity of ALS diagnoses means that most people have never met someone living with the disorder, leaving patients feeling isolated. “In a sense, they’re almost removed from society, if it weren’t for technology,” he said.
According to Pew Research, Americans living with disabilities are nearly three times more likely to say they never go online, and are less likely than people without disabilities even to have broadband service at home. Tech companies are increasingly offering tools aimed at helping disabled people use technology — on May 16, which was Global Accessibility Awareness Day, Apple introduced new tools to help blind and deaf students learn to code, and Microsoft released a groundbreaking Xbox controller for gamers with limited mobility — but most technology remains difficult or impossible to use for people with disabilities.
Though most smart homes are not specifically designed with accessibility in mind, Gentry has cobbled together a home that works for him, using creative work-arounds like controlling his Amazon Echo with synthesized speech. Still, he wishes more automation products were aimed at helping people living with disabilities — or that they would at least play nicely with communication systems like the one Gentry uses every day.
The devices and software Gentry uses in his setup aren’t cheap, either. He received his first communication device from Team Gleason, a foundation named after a former NFL player who was diagnosed with ALS. Without that help, Gentry says, the device would have cost between $12,000 and $15,000. His insurance, which he described as “really great,” would not have covered it.
Gentry’s technical savvy has significantly eased his life with ALS, but for him, technology isn’t a convenience — it’s a necessity. “When my eye tracker breaks, I am literally lost,” he wrote to me. “I have no other way to communicate.” When it works, Gentry can use his eyes to manipulate his smart home, communicate with friends and family, call for help when something’s wrong, and — crucially — help others in his situation learn to do the same.