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Our Journey

LifeDrive was founded in 2021 by John Sexton. After his dad's ALS diagnosis seven years earlier, John and his dad started brainstorming ways to help people living with ALS extend their freedom of mobility and improve their quality of life. As a result, they created EyeDrive, CareDrive, and VoiceDrive technologies. These solutions give all individuals who face mobility challenges with drive options to regain their freedom.

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More from Shawn

 

I was diagnosed with bulbar onset sporadic ALS in September 2014. After seven years of relentless ALS progression I can no longer walk; I use a powerchair to get around.

 

In early 2017, I could no longer use my hands and arms to safely control the joystick on my power chair. I still had some neck control although I knew my neck was weakening.

 

While researching the interface on the power chair, I realized that John could build a device that would allow me to drive and control my seating position with my eyes. In April 2017 we designed the device and its software as well as an eye gaze app. One of our design goals was not to limit the device to only eye gaze.

 

Caregiver phone apps came soon after as a safety measure. In the few years since then we have improved and refined the apps and added apps like voice control. John has improved the device and while at Notre Dame he developed a really great custom board. We made it easy to switch between communi-cation and driving apps, and we have experimented with person tracking technologies. The system I use today is very refined from years of use.

More from Kathy

When Shawn and I were married in 1993 we began a family journey including the adventure of raising our son, John. 

 

When Shawn was diagnosed with ALS in 2014 we faced challenges we could never have anticipated. Our needs changed daily as he lost his ability to move, speak, breathe, and swallow independently. It was hard to know what he needed when he had no voice and we had to rely on non-verbal cues. Such rapid progression called for quick thinking, short-term solutions, clinical help, and more help at home.

Some of the interim solutions we found worked for too short a time. For example, while we were still using a walker we discovered that he really needed a wheelchair but evaluation and approval left him needing the wheelchair long before he got it. Same for the eye gaze solution: by the time he was evaluated, Shawn was locked in, unable to speak, doing as much as he could to spell out words in an iPad voice app while losing control of his hands. Gradually the wheelchair came, and an eye gaze system, both which opened up communication, independence, and his brilliant creativity again.

They say necessity is the mother of invention...

 

We learned the hard way when Shawn lost the ability to control his power wheelchair. At the time, the eye gaze system did not work outside so he could not use it to speak. He suddenly lost control of his left hand. He had the joystick drive control in full forward position. Without the eye gaze he could not tell me that he had lost control, even though things appeared to be normal. But when the look on his face changed and he started accelerating down a hill it was clear that the only thing that I could do was sprint along beside him and abruptly turn the chair off.

 

When he could no longer safely drive, he had to rely on me and our caregiver, Samantha, not only for driving, but also for adjusting his seating position, legs, back, everything. Imagine that you want to sit in a fully adjustable recliner but need for someone to put you in it. Then you have to tell them how far to recline and if you want the leg rest up or need your hips farther back. Now communicate all that without speaking. That is the challenge Shawn faced with patience and inspiration and ultimately it led to our quest to find a better way to fully control his wheelchair - with his eyes.