by Leah Twilley

Lylah Gritter has spinal muscular atrophy and had trouble moving before she began working with a group of professors and students who built a device to help her move independently. SMA is a genetic muscle disorder that causes extreme weakness.

The play and mobility device allowed Lylah to control her movements with a joystick. Holly Gritter, Lylah’s mother, said her daughter gained an independence she didn’t have before.

“She was terrified of the device at first because she’s never been able to control anything,” Holly said, “but you could see it quickly clicking with her and she realized she has this freedom.”

That was in 2015. Today, Lylah has been upgraded to having her own power wheelchair. Lisa Kenyon, associate professor of physical therapy, said the power mobility training at Grand Valley helped Lylah and her family become qualified to receive a permanent — and often hard-to-get — power wheelchair.

Lylah’s training was part of the GVSU Power Mobility Project, led by Kenyon and John Farris, professor of engineering. Since 2012, they have worked with more than 20 patients and their families to study the effects of power mobility training on children with severe disabilities.

Engineering students designed and built the training devices, which were funded through a five-year, $180,000 grant from the National Science Foundation.

“We think of power mobility as more than a way to get from Point A to Point B,” Kenyon said. “It’s an opportunity for a child to learn and explore. Each child might be learning something different, from problem solving to spatial awareness to exploration. It can be life changing.”

Farris and Kenyon are being recognized as experts in this field. They have presented at several conferences and symposiums, and their research has been referenced in a position paper by the Rehabilitation Engineering and Assistive Technology Society of North America. The soon-to-be published paper summarizes best practice trends in assistive technology.

Dan Vaughn, chair of physical therapy, said the position paper will serve as a decision-making guide for clinicians throughout North America and will be used by funding sources and insurance companies to determine coverage of power wheelchairs.

Expanding with EEG equipment

When Kenyon and Farris began researching power mobility five years ago, they had a hard time convincing reviewers of their research that children who were non-verbal were driving purposefully and the choices they were making were not just by chance or accident.

“We wished we could get inside their brains to see the learning that’s going on. Then we thought, ‘Maybe that is the answer,’” said Kenyon.

In December, the pair expanded their research by launching a 20-week pilot study to explore if power mobility training changes the range of EEG (electroencephalogram) activity of children who have multiple and severe disabilities. They enlisted help from Samhita Rhodes, associate professor and chair of biomedical engineering.

During the study, children used a student-built power wheelchair trainer that included three buttons for navigation. An EEG testing cap tracked and recorded brain activity. The study included one training session every week with each child. A graduate student analyzed data and the group found that all three participants demonstrated overall improvements in their power mobility skills.

“As far as we know, this is the first study of its kind to use EEG recording equipment to monitor brain activity of children as they navigate their way with a power wheelchair trainer,” said Kenyon.

They have worked with children like Gabby Troeger, a 5-year-old girl from Hudsonville, who cannot move herself or communicate verbally. When the team began working with Troeger in 2015, she navigated her way through halls and doors and the EEG cap recorded her brain activity. Her mother, Jessica Troeger, said she noticed improvements.

“Gabby is much more alert now,” Jessica said. “She’s happy and gets very excited when she gets to train.”

Kenyon said the training has allowed Gabby to understand cause and effect. “She made decisions and choices, and explored and interacted with her environment. I’m very proud of her,” she said.

The Team

• Lisa Kenyon, associate professor of physical therapy

• John Farris, professor of engineering

• Samhita Rhodes, associate professor and chair of biomedical engineering

• Naomi Aldrich, assistant professor of psychology

• Paul Stephenson, professor and chair of statistics

• Students: engineering, psychology and physical therapy majors

Farris said the next step is to continue the study. The group has obtained funding to purchase more sophisticated EEG equipment and to upgrade from their current headset, which has 14 electrodes. The new headset will have 64 electrodes, which will allow the team to collect more data at a higher sampling frequency.

The group has met with colleagues at other universities, including a researcher at the University of British Columbia who studies EEG patterns of infants and people with concussions. Kenyon learned there’s a characteristic quality to the EEG pattern of individuals with concussions.

“I wonder if children with severe impairments have a specific characteristic EEG pattern as well. It hasn’t been looked at, so it’s something we often think about. We’re on the cutting edge of this research,” she said.

The group is also exploring the psychological impact on mothers of children who receive power mobility training. Naomi Aldrich, assistant professor of psychology, is analyzing interviews conducted before and after training.

When Kenyon transcribed the interviews, she observed encouragement from some mothers.

“At the beginning of the training, many moms would talk about what their child could not do,” she said. “At the end of the training, several of the moms started talking about the things their child could do. That is encouraging to us as we continue this study.”