Frustration mounts when ALS assistive technology isn’t so helpful

When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was getting unwanted clicks when trying to read what was on the screen. In the drive mode, his chair moved when he didn’t want it to. It was scary.

Todd suspected the gaze-to-click dwell time could be delayed or perhaps disabled entirely, so he could instead use his HeadMouse Breeze sip/puff clicker, which he uses every day on his desktop computer.

In any case, he knew it would take time to figure out, but he was in no hurry because he says he’s not good with technology.

I never believe it when he says that. Using his HeadMouse, he’s figured out how to edit audio files for our church, and he’s typeset my books. When our son was 13, Todd even coached him on building a gaming computer. And I see other people in the ALS community using an eye-gaze system to drive their wheelchairs. I figured he’d figure that out, too.

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Todd was finally willing to give it another shot after we switched to daylight saving time and the clock on Todd’s wheelchair could only be reset by connecting the eye-tracking computer.

I attached the arm that holds the tablet to Todd’s chair and plugged everything in. I covered the eye-tracker’s sensors with paper so Todd wouldn’t make any inadvertent clicks, and then I acted as Todd’s hands while he directed me to tap through the program. I typed his questions into ChatGPT and read the answers aloud as he tried to troubleshoot the problem.

Todd grew more frustrated than I’ve seen him in 23 years of marriage — including the 15 years he’s lived with ALS. His anger wasn’t directed at me, but it was unsettling because he usually takes things in stride. We took a break to have lunch.

I’m much less computer-literate than Todd, so I asked him a few questions to figure out where the problem lay. He looked exasperated and answered my question sharply.

“You don’t need to get cranky with me,” I said and burst into tears.

It actually felt kind of good to cry after the stress of the morning. We had a heated discussion after which he apologized for being such a bear.

Later that afternoon, Todd called customer service. The representative was able to remotely access the computer, show us a few things, and answer Todd’s questions. The gaze-to-click couldn’t be disabled, and the Breeze sip/puff wouldn’t work in drive mode, but the representative tweaked a couple of settings and explained how the system responds to Todd’s gaze.

Understanding how the system works goes a long way toward helping Todd use it, but it will still take time. He’s not particularly motivated, though.

“Where am I going to go?” he said.

“You said you miss being able to move on your own so you can look out the windows,” I reminded him.

“I can position my chair in front of a window, but I’ll have a screen in front of me,” he said.

“You might like being able to change your seat position while you watch YouTube,” I suggested. I’d previously scoured the internet searching for solutions that would allow Todd to change his seat position, such as by using his voice, but I came up with nothing.

Todd played around with the screen and watched one news report on YouTube, and then decided he’d had enough for one day. He prefers to watch videos on his desktop computer using his HeadMouse, which doesn’t keep clicking every time he looks at something.

By the end of the afternoon, the new technology was still more frustrating than his confinement. So far, the system that promised independence has brought tension and tears.

Every new piece of equipment carries a little bit of hope, but it’s often a lot of work to adapt to it. What works for one person doesn’t necessarily work well for another, so it takes trial and error to find solutions. And oftentimes, unfortunately, there is no ideal solution to a problem.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.