As we try out new wheelchair technology, I have much to learn

Without a service technician in our area, we're adjusting as needs change

Kristin Neva avatar

by Kristin Neva |

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When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to the rear of the footrest, so Todd could slip his heel back to return to a seated position. After he lost all use of his legs, the technician removed the egg switch.

Todd later lost all use of his arms, too, so he began using a head array to drive and change his seating position. When he wants to recline to nap or relieve pressure on his bottom, he has to avoid going back too far or he’ll get stuck there with his head pinned against one of the buttons. Or his cheek might accidentally hit the head array’s egg switch, and he’d be unable to lift his head off the proximity sensors to reactivate the control.

With all the technology now available, we thought there’d be a solution, such as using an Alexa-compatible device so Todd could give his chair voice commands. Unfortunately, our durable equipment provider no longer has a technician to service our area, and it’s not practical for us to travel four hours to an ALS clinic.

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I explained our dilemma to a Facebook ALS group, where someone suggested I reach out to the Adaptive Technology Center at the Steve Gleason Institute for Neuroscience at Washington State University. The center’s staff is familiar with technology available through durable medical supply companies that could be covered by Medicare or other insurance plans. They also keep abreast of off-the-shelf solutions and have many items that people can try without having to purchase them.

A guide through the technology landscape

The center offers tours for those who can get to Spokane, Washington, but that isn’t possible for us in Michigan. Instead, I set up a Zoom meeting, where we connected with staff member Victoria Perkins and explained our situation. She asked questions about Todd’s specific wheelchair, so I crawled around the base of it with the web camera, showing her where cables were plugged in and which ports were available.

“Oh, that looks just like my son’s chair,” Victoria said. “Try U2.”

I tried plugging in an old egg switch into that jack, but nothing happened.

“Try U1. That’s where I plugged a switch into my son’s chair.”

I tried that jack, but it only replicated the cheek switch, which wasn’t helpful.

Then Todd vaguely remembered that the technician had removed and unplugged his heel switch from the bottom right of the chair. Bingo! I found open ports labeled M1, M2, and M3, each corresponding to his preset positions. I plugged the egg switch into different ports until we found one that returned Todd to a position where he could regain control of his head array.

But we still had a dilemma — how was Todd to activate a switch?

He still has his voice, limited head movement, and the ability to twitch his left ring finger. Given that, Victoria reviewed a number of options with us, including the benefits and drawbacks that Todd might face.

The Ultimate Ball End Wobble Switch from Enabling Devices could be activated with the slightest touch; it could work if placed next to Todd’s head. The 36-Inch Easy Flex Sip and Puff Switch from the same company could work for Todd because he still has the ability to use a straw, but I would need to position it pretty much in his lips because he can’t move his head to reach it once reclined. As far as voice-controlled options, she pointed us to the SwitchBot, but we might have trouble rigging it up to press, hold, and release as would be required to change the seat position.

The winning solution might be the Finger Switch from GlassOuse. It could be attached with Velcro to Todd’s ring finger, and it requires only light pressure.

After the meeting, Todd said, “When she mentioned her son, I realized we were dealing with somebody who really knows what she was talking about. She’s tried it and hasn’t just read about the technology.”

I was impressed by Victoria’s technical knowledge of wheelchairs, since she’d learned the ins and outs of her son’s. I’m not a naturally tech-savvy person, and I hadn’t learned more than the basics of taking Todd’s head array on and off. But now that we don’t have access to a wheelchair tech, it’s time for me to learn.

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.


John alvarez avatar

John alvarez

i continue to admire you two from afar. I have had als for about the same time as todd. Here in Australia we seem to have better government help although you have the great companies that provide such magical tools
god bless you two and your children

Kristin Neva avatar

Kristin Neva

John, thanks for commenting. Wish we all could have government help and technology!

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