Fall 2010 Issue | By Chris Gabettas
Institute of Rural Health Changing Lives of TBI Survivors
When you look at 44-year old DeWayne Mayer, he seems fine.
He smiles and makes small talk as he sips on a pumpkin-spice latte on a cool September afternoon at the Idaho State University-Meridian Health Science Center.
He's a little tired, but that's understandable after a day of doctor appointments in downtown Boise, about 45 minutes from his home in the rural Idaho community of New Plymouth.
Then suddenly, his hand starts to shake. He has trouble putting words together.
DeWayne Mayer and his wife Jeanette.
His wife, Jeannette, gently takes the cup from his hand so he doesn't drop it.
"He has tremors," she explains later.
DeWayne is one of 35,000 Idahoans living with a severe traumatic brain injury or TBI, caused by a blow to the skull or a penetrating head wound that disrupts brain function.
Symptoms include tremors, seizures, memory and speech loss, inability to concentrate, changes in personality, and extreme fatigue, according to Russell Spearman, director of the Traumatic Brain Injury Program at Idaho State University's Institute of Rural Health.
Many of Idaho's TBI survivors are war veterans like DeWayne, who've survived bomb blasts in Iraq and Afghanistan. Others are people who've sustained head injuries in traffic and sports-related accidents or experienced falls, strokes and brain aneurysms.
The emotional ordeal of dealing with a TBI can often be as traumatic as the injury itself, especially in rural states, like Idaho, where community resources and support systems are limited.
"Sometimes you just need people to talk to, people who understand what you're going through," says Jeanette.
DeWayne, a staff sergeant with the Oregon Army National Guard, was deployed to Kirkuk, Iraq, in 2004. A year later, he had experienced a combat accident, helicopter explosion and three roadside bomb blasts-one so serious he was sent back to the United States to recuperate.
As the physical wounds began to heal, Jeannette noticed changes in her husband - short-term memory loss, inability to concentrate, outbursts of anger.
DeWayne noticed the changes too. "People would say, 'hey, you look good,' but it's what's going on inside of you that people don't understand," he says.
Army doctors initially told the Mayers nothing was wrong with DeWayne. Frustrated, the couple contacted Idaho lawmakers and veteran's groups, who referred him to the Idaho Elks Rehabilitation Hospital in Boise, where he was diagnosed with a TBI in 2007.
"It's been tough," says Jeannette. "I would often cry myself to sleep."
Spearman understands the heartache of families dealing with a TBI. His 18-year-old daughter sustained a moderate traumatic brain injury in 1993 in a car accident in Boise.
"It was hard to find the community resources and health professionals to diagnose the injury and treat it," he said.
The challenges his family faced sparked his interest in TBI research, which brought him to ISU in 2000.
In the last decade, the Institute of Rural Health has secured more than $2.1 million in federal grants to assist TBI survivors and their families, including a $1 million grant awarded to Idaho State University in 2009. Spearman is this grant's principal investigator.
The money is from the U.S. Health Resources and Services Administration's Maternal and Child Health Bureau, which has designated Idaho State University as the state's lead agency for TBI education and research.
With HRSA funds, the Institute of Rural Health has created the ISU Traumatic Brain Injury Virtual Program Center, a website that provides comprehensive information about TBI resources and services in Idaho. Users are able to tailor the information to fit their individual needs and participate in online chats.
The grant money has also paid for videocasts, hosted by national TBI experts, medical professionals, survivors and caregivers, and available to people all over the world via the Internet.
Topics have included discussions of personality changes in TBI survivors, coping with loss, helping caregivers avoid fatigue, and strengthening the support network for Idaho soldiers returning from active duty and their families.
The Mayers, who presented their own story in one videocast, say Spearman is a lifeline to rural families dealing with TBI.
"He's like a social network for TBI," Jeanette. "He knows how to connect the right people together to fit everyone's needs."
The HRSA grant will run through 2013. By then, Spearman and his team hope to establish a trust fund to assist TBI survivors who are making the transition from critical care to independent living.
"Our intent is to provide financial assistance after they've exhausted their insurance benefits and other community resources," says Spearman.
He and his research team are currently exploring public funding sources, which must be approved by the Idaho Legislature before the trust fund becomes a reality. Some 24 states currently have similar trust funds in place.
It's been more than three years since DeWayne's TBI diagnosis, and the Mayers' lives are forever changed.
At home in New Plymouth, notes are posted around the house, reminding DeWayne to lock his truck or turn off the lights-tasks he often forgets.
There are notes for Jeannette too-telling her to take a deep breath, relax and to not sweat the small stuff.
"People ask us how we get through every day, and then I realize that I am one of the lucky ones," she says. "The lucky spouse whose husband came home alive."