Hoping for better technological solutions for people with ALS

Since my husband, Todd, was diagnosed with ALS 14 years ago, I’ve been on the lookout for technology that will improve his comfort and quality of life while making my role as his caregiver safer and easier.

Moving Todd is hard on me physically. He’s a big guy, and I have small bones. We purchased an overhead lift, which makes it relatively easy to transfer him, but I’ve hurt my wrists turning him in bed. I wish I could find a better solution for turning him and getting a sling underneath him. I wear wrist braces and have tried a turning sheet, but I’m looking for an automated solution.

Years ago I came across one such device, but it was only available for nursing homes in the United Kingdom. Recently I did another internet search for patient-turning devices and came across the EasyShift repositioning system, developed by clinicians and engineers at Duke University. I’m waiting to get a quote from the company and find out if the system will work with Todd’s bed.

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Assistance for sleep

Our biggest challenge is sleep. Todd has tried numerous turning beds, mattresses, and toppers. A woman who’d lost her husband to ALS generously gave us a Hillrom hospital bed that he’d gotten from the Department of Veterans Affairs. But Todd couldn’t easily turn to his side in that twin-size bed, and he didn’t find the mattress comfortable. I found another home for it, and it worked out well for that person with ALS.

Todd also tried the Freedom turning bed, the Völkner turning mattress, and SpanAmerica’s turning mattress. Each was designed to prevent pressure sores by slightly tilting a back-sleeper from one side to the other. But none of them worked for Todd because he’s a committed side sleeper. He can only fall asleep on his back at the end of the night, after having a few stretches of sleep on one side and then the other. For that, Todd has needed help from nighttime caregivers, who put him on his back before they leave at 5 a.m.

To extend Todd’s time in bed before he needs to call me in the morning, we purchased the Beautyrest Black Luxury Base, a consumer-grade adjustable bed frame that’s compatible with an Echo smart speaker. Todd still has his voice, and so he can tell Alexa to “ask my bed to raise head,” start massage, or increase lumbar support so his chest expands and he can breathe better. Alexa doesn’t respond perfectly to his voice commands, but it’s pretty good. It gives him a bit of independence, but only for a couple hours in the morning.

On nights when we haven’t had a caregiver, we’ve thought it’d be helpful if Todd could sleep in his wheelchair, where he has the most independence. But that would force him to remain mostly in a seated position. He uses a head array to control his chair, so if he reclines too far, he cannot return to a seated position. We haven’t been able to find a switch he can use to adjust it back.

I wish his chair were compatible with Alexa or some other voice-command technology, so Todd could adjust his seat position. With that, we’d replace the head array with a soft headrest or even comfortable pillows, so he could tilt back to sleep and change position from time to time.

That seems possible, at least for changing the seat position. People have been working on voice-controlled wheelchairs since at least 1977, but I can’t find one that’s available to consumers and would meet his needs.

Stymied plans, but hope remains

At one point, engineering professors at our local university here in northern Michigan were working on a proof of concept to get funding from the National Institutes of Health so they could develop technology for people with ALS.

Asked for input, Todd said he needed a way to adjust his arm positions while he’s in his wheelchair. The engineers said that getting the device to communicate with Alexa was the easy part; the hard part was getting the device to actually move his arms. The project, unfortunately, fizzled when the funding didn’t come through.

Technology is rapidly developing, however, and I’m hopeful that soon better solutions will exist to manage the needs of those living with ALS.

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