Engineering hope: Sacajawea students confront the reality of physical limitations at Gleason Institute

Last week, teacher Kim Taylor and her engineering students at Sacajawea Middle School were looking for some inspiration.

They found it inside a small, one-story building on East Sprague Avenue.

The Adaptive Technology Center is the latest addition to the Steve Gleason Institute for Neuroscience. Opened last fall, it’s a place that sheds light on dark circumstances.

Mostly, it serves as a testing ground for patients with neurodegenerative diseases and related disorders to see what kind of technology might enhance their lives.

It’s also a place where students could understand their limitations and be inspired at the same time – much like Gleason himself.

The Spokane native was a football star at Gonzaga Prep, Washington State University and the NFL’s New Orleans Saints. In 2006, he inspired that city by blocking a punt to set up the Saints’ first home touchdown after Hurricane Katrina.

Five years later, Gleason was diagnosed with amyotrophic lateral sclerosis, or ALS.

Also known as Lou Gehrig’s disease, it gradually stole his speech and motor skills.

His experiences with students, captured on video over five years, were featured in a documentary that still inspires.

First proposed in 2015 by former Washington State Spokane Chancellor Lisa Brown, the Gleason Institute for Neuroscience was founded four years later, after Chancellor Daryll DeWald made it a priority.

The institute takes a three-pronged approach with clinical research, discovery research and adaptive technology to providing services for patients suffering neurodegenerative diseases.

Before the pandemic, Taylor’s class at Sacajawea had been working with Ronald McDonald House Charities.

Later, Taylor met a mother whose son had been diagnosed with multiple conditions, including spina bifida.

“He was rolling around on the ground on the floor, so I asked if he had a robotic wheelchair,” Taylor said.

“I was absolutely sickened to find out that their health insurance would not pay or partially pay for one, and the one he needed was between $60,000 to $80,000,” Taylor said.

She was able to procure three car seats from a local auto dealer, with the aim of building wheelchairs around the seats.

But how to adapt those wheelchairs for kids with limitations? That’s where the Adaptive Technology Center came in.

Taylor’s students arrived Thursday morning, split into groups and assigned a specific “limitation.”

At one station, a boy attempted to play a video game with one hand. After some mixed success, he was informed that his pinkie finger was no longer working.

Suddenly, the game got tougher.

In another room, students were hooked up to a device that allowed them to make choices on a screen using only their eyes.

“It’s definitely challenging, because I’m accustomed to using my finger,” said Izzy Heister, an eighth grader. “You take it for granted that you can use your arms and legs every day, so having to pretend to be someone who can’t – I just can’t imagine.”

A few feet away, reality hit another girl in the mouth. Sitting in the kitchen, another was told that her limitation would be an inability to speak or swallow.

“Then how do I eat?” the girl said.

“Exactly,” said Theresa Whitlock-Wild, project manager and designer of the Adaptive Technology Center. “I told her that she would need a feeding tube.”

The girl’s face sank. This was no longer a game, but an exercise in the realities of life for thousands of people and their families.

Whitlock-Wild has provided the facility with passion, as well as expertise; her husband, Matthew, suffers from ALS.

The facility is modeled with an office used for virtual reality wheelchair simulations, a bathroom outfitted with adaptive equipment and a kitchen that uses smart home appliances.

“When I designed the Adaptive Technology Center,” Whitlock-Wild said, “I wanted it to be as inclusive for families as well as scientists, researchers, therapists, doctors and really hoping to challenge the way that we provide care for these families, find ways to find immediate solutions for their needs and alleviate the burden of them doing that research themselves.”

Other burdens are less obvious.

On a tabletop in the kitchen sits a device that allows a person with physical limitations to feed with a robotic device.

“So that people can eat with dignity,” Whitlock-Wild said.

These devices, which cost about $9,000 each, are regularly provided by health insurers in western Europe, but not in the United States.

That reality brought the issue full circle for Taylor and her students.

“Part of this is just to bring awareness to the public,” Taylor said. “The goal was to find families that need these resources, and now our students are learning about adaptive strategies.”

But this was no academic exercise.

In years past, Taylor’s class has helped design everything from safety devices for the Ronald McDonald House to plastic clips that help FBI robots examine suspicious packages.

Perhaps the best practical application came in the back room, where students were tasked with maneuvering a joystick-controlled virtual wheelchair on a narrow patch. One small slip and they would be consumed by virtual lava.

“It was more difficult than I thought it would be,” said eighth grader Elijah Andresen. “But it helps me understand the challenges that the kids we’re building wheelchairs for will go through.”

Watching with interest were DeWald and Dr. Ken Isaacs, who was named director of the institute in October.

Both stressed the importance of partnerships, which include Team Gleason, Providence Health & Sciences, and St. Luke’s Rehabilitation Institute. Other stakeholders include Avista Corp. and the Health Sciences & Services Authority of Spokane County.

Isaacs noted that part of the institute’s mission is education.

“Part of that education is all these wonderful kids learning and maybe inspiring them to work with us,” Isaacs said.

“This was really inspiring, and we are going to have to work to have another event for them,” Isaacs said.

DeWald also looked to the future.

“This is part of what we want to do, because it builds the enthusiasm, for problem-solving for real challenges that are not being met,” said DeWald, who visited Gleason and his family last weekend in New Orleans.

“We are very eager for this to be a community, state and regional asset,” DeWald said.

Part of the dream is to turn a large back room into more testing space in the rear of the building. On Thursday, it offered more inspiration: a wheelchair race course and a dining room with pizza for everyone.