Donnie Graham, a former engineer, lived with amyotrophic lateral sclerosis (ALS) for more than eight years in Portland, Oregon, with his wife, Jan Steinbock, as his primary caregiver.
He became quadriplegic, unable to move his legs or arms, and was dependent on noninvasive ventilation for many of those years. He operated everything, including a Surface Pro tablet and his wheelchair, through an eye-tracking camera.
Donnie first tried an early version of the Ability Drive technology on June 10, 2019. He was one of the early adopters of this technology to operate his wheelchair via eye-tracking and provided ongoing feedback to Jay Beavers [of Ability Drive manufacturer Tolt Technologies] to add features and improve the functionality.
This is an interview with Jan, describing the impact Ability Drive had not only for Donnie, but also for her as a caregiver, and what it did for their relationship. — Interview by Kara Hayden, MS, SLP
Q: How did Donnie hear about the technology for operating a wheelchair with his eyes?
Jan Steinbock: He was following Steve Gleason [a former NFL player who was diagnosed with ALS in 2011, at age 34], and he heard about the original prototype being done at a Microsoft Hackathon. Gleason had asked for a way to drive his chair when he couldn’t use his hands anymore.
Donnie was just sold on it. He kept watching and reaching out to Microsoft to see if they needed someone to help be a test or development end user. Donnie was an engineer in circuit board test/design and was eager to help with that project.
We were never able to make that connection. But the whole time, he was watching to see anytime something came up about the development of that. And it got to a point where they were ready to market it. Donnie started immediately lobbying with the ALS clinic and with our local DME [provider].
I think he was the second person in Oregon to get it installed on his chair. He was either the first or the second. He was waiting to adopt that technology.
Q: Why did Donnie want to be able to control his wheelchair himself?
Jan Steinbock: He wanted the independence. He wanted to be able to control and have the ability to drive his chair around. He knew he was going to become a quadriplegic, and he wanted to be able to retain as much independence as he could.
Being able to move your chair when you can’t use your hands anymore is huge. It’s not necessarily rolling your chair down the street or through a grocery store. What it really is, is just those small movements, like when you’re facing the TV and you want to turn and look out the window. You’re talking to somebody, and somebody says something behind you, and you want to be able to turn around and talk to them and face them directly.
It’s being able to maneuver through your house and be able to get from room A to room B. It keeps you from feeling totally trapped in a chair and dependent on other people to move you every little tiny bit. And that is just incredibly important because it is needed all day long. If you are a quadriplegic, that can’t be understated, just to be able to have that ability to move.
We’d be out in public. I would be at the back of the chair with the caregiver control, hand steering it. We’d stop to talk to somebody, and inevitably, people would talk to me instead of Donnie. I don’t think people are ever even consciously aware that they’re doing it. But they walked to the side of the chair and bypassed talking to Donnie.
Donnie would be constantly turning his chair, turning his chair, turning his chair so that he would be facing that person we were talking to. That was a constant frustration. He would really feel excluded and unseen. So to be able to turn his chair and keep repositioning it so he could remain a part of the conversation was really important to him.
Q: What was the impact on Donnie’s quality of life?
Jan Steinbock: [Ability Drive} wasn’t there for going for a long walk around the block. When you’re on a long walk somewhere with the chair, you have to look at that button and have it drive you straight, straight, straight and you cannot be distracted by anything. You can’t look at the person you’re walking with. You can’t turn and look at something that you’re walking past, because if you do, your eyes go off the screen, and the chair just stops. Or if you are looking a little bit above it, you might start turning.
So it takes a lot of concentration to go for a walk. Jay really thought that when he got this, he’d be able to go through grocery stores and stuff like that. What we found in reality is that that was always problematic. Because he could drive and then he’d be like, “Oh, I really need to look at something.” So he’d have to stop the chair, and then turn it and look.
What we found in day-to-day life, particularly for me as a caregiver, is that suddenly he could just leave the living room and roll out into the kitchen and let me know he needed water. Instead of trying to call me or get my attention or wait for me to come to him, he could come to me.
He liked to sit in our front room so he could watch TV, and he would position himself so he was looking at the TV. But if he turned a little left, he could look out the window and see people going by on the street. And if he turned a little right, he could see me in the kitchen or across the living room. Just being able to turn the chair and move it around and roll a little bit forward to get a better look at something was something that didn’t leave him stranded in one place when he couldn’t drive with his hands. All those little moments during the day when you just need to move maybe 10 feet or just into another room or you just want to be able to turn your chair. That is so critical for the quality of life of someone who’s a quadriplegic. [Ability Drive] totally gave him the ability to do those things.
The other thing it gave him was that he could cycle through the different chair modes. He could tilt and recline the chair. He could raise and lower his legs. For someone who’s a quadriplegic, that’s really critical. Because for people who are quadriplegics, you have to be on top of things like blood circulation in their legs or their feet get puffy. That’s the type of thing that can kill somebody or put them in a hospital.
That’s a huge, huge health benefit. He could manage all that on his own. He wasn’t constantly waiting for somebody to come over and do that for him.
Q: I want to touch on the caregiver impact for you and for other people around him. How did having Ability Drive impact your caregiving and your ability to leave him with other people temporarily?
Jan Steinbock: Trust me, nobody wanted to try to figure out how to drive that chair. If Donnie wasn’t driving it, and I wasn’t there to drive it, we had a couple of family members that were willing to jump in and try. But a lot of times if we were in public with friends, or at a restaurant, and if I left to go to the bathroom or if I stepped away for any reason, people would just be like, “Oh no, we hope Donnie doesn’t need to be moved.” For him to be able to just do that on his own was huge.
When you’re a caregiver, you are anticipating everything they need and doing it, particularly once they become a quadriplegic. But even before then, you’re trying to get your own stuff done. You’re trying to keep the house running. You’re essentially trying to be you and them all at the same time, all the time. It’s just exhausting and overwhelming.
By him being able to just move around the house, come and get me and say, “Hey, I ran out of water, can you refill it?” That has a huge impact on caregivers. It’s all these little moments during the day, when you don’t have to go and get them and move them and shift them and everything else because he could do it himself.
Even the things like being able to raise and lower his legs so his feet didn’t swell and the blood circulation was good. It doesn’t add that to what the caregiver is already doing. It lets that person keep doing it for themselves. The longer he could retain any ability to do things himself, it keeps that caregiver burden from becoming worse.
We all love being independent and not having to rely on other people, and we love being able to have a certain amount of agency in our own lives. Just to be able to keep that and use this as a tool to do that is huge. It’s not like one huge flashy thing. It’s all these little moments during the day, in a week, and they all add up. They make a huge difference for a caregiver.
It’s not only just those moments where he’s able to be independent, it’s how he thinks of himself. And it’s how I think of him. Just from an emotional point of view, of how you are dealing with this disease. I can’t do all these things anymore, but I can still do this. And that’s huge. That is such a gift to be able to keep that going as long as you can in as many ways as you can.
Editor’s note: Read more about alternative drive controls in Mobility Management’s 2024 Seating & Positioning Handbook, now available.