‘It’s like a second life’

CU student one of thousands helped by state Traumatic Brain Injury Trust Fund that enterprising CU neuroscientist helped set up

Gerard Dillehay remembers waking up in an MRI machine, feeling claustrophobic and thinking, “Get me out of here!” How he got there, however, he doesn’t recall.

His friends do. As he bicycled to his calculus class at the University of Colorado in late September 2008, he crashed. He was wearing a helmet, but he sustained a serious head injury.

In a stupor, Dillehay telephoned his roommate and asked how to find his calculus class. That request was strange, given that Dillehay had been attending class for a month.

Dillehay entered class 20 minutes late. A friend in the room noticed that Dillehay opened his notebook and jotted down the wrong date, then didn’t write anything else for the rest of the class.

That was unusual, as was the fact that, after class, Dillehay kept repeating himself. Also, Dillehay was bleeding from his ears. Friends took him to the hospital.

Later, Dillehay emerged from three hours of unconsciousness. He could not read or write. A doctor told him he was suffering from partial amnesia and would need to be particularly careful for three months; another head injury could cause complete amnesia.

In that case, Dillehay wouldn’t even know who he was.

With the help of the Colorado Traumatic Brain Injury Trust Fund and from CU Disability Services, Dillehay has painstakingly regained much of his ability to read and write.

Though he tires quickly when reading and still works to improve his short-term memory, Dillehay has stayed in college and is still studying for his bachelor’s degree in ecology and evolutionary biology. He is also pursuing a minor in geography.

Without the help of the TBI Trust Fund, this might not have been possible. Dillehay surmises, “I think it would have been very hard for me. For me, it’s a blessing. I’m so grateful.”

Help for injured Coloradans

Dillehay is one of about 4,000 people who have been helped by the Colorado Traumatic Brain Injury Trust Fund, which would probably not exist without the efforts of Theresa D. Hernández, Ph.D., CU associate professor of psychology and neuroscience.

Hernández has been studying traumatic brain injury throughout her academic career. In the late 1990s, she attended a neuroscience conference in Kentucky and learned about that state’s TBI trust fund.

In 2001, Hernández contacted her state representative, Todd Saliman, an influential member of the powerful Colorado Joint Budget Committee. Using the Kentucky program as a template, Hernández helped draft the bill.

Saliman, a Democrat, sponsored the bill in the House, and former Sen. Dave Owen, a Republican, sponsored it in the Senate. The bill was introduced, passed and signed into law in 2002.

The bill imposed a $15 surcharge on DUI and DWAI convictions, and a $10 surcharge on speeding convictions. In 2009, the Colorado Legislature raised the surcharges by $5 each, and it added a new surcharge of $10 for motorcycle-helmet-law violations.

Today, the surcharges generate about $2.5 million annually. At least 55 percent of revenue must be spent on services for people like Dillehay, while 25 percent is dedicated to research and 5 percent to education.

The TBI Trust Fund provides-care coordination and case-management support, which helps individuals access services—such as speech therapy, occupational therapy, cognitive and physical rehabilitation—that help in the recovery of those who’ve suffered traumatic brain injury.

As Hernández notes, however, therapy does not necessarily start immediately, because brain injuries do not tend to stabilize immediately. “What you see a day after or seven days after is not necessarily what you see six months after,” Hernández notes.

Where’s the shampoo?

For individuals with TBI—which can range from mild to severe—even simple tasks can be daunting. For instance, a person with no brain injury can stroll into the grocery store and easily find, say, a favorite shampoo. The shape and color of the bottles are visual cues.

But a person with TBI might have a very hard time remembering such details and could wind up painstakingly poring over shampoo labels, brand by brand.

“Fatigue is a big issue,” Hernández notes. “It has to be dealt with. The only way to recover sometimes is to wait until the next day.”

Before the TBI Trust Fund, many people were simply “falling through the cracks,” Hernández says.

One goal of the trust fund was to make sure that clients got help with case management. Such help could be something as simple as helping clients fill out paperwork.

Given people with no brain injury might have difficulty attending to such details, for those with TBI the challenge was overwhelming. “That’s what we heard time and time again,” Hernández recalls.

Judy Dettmer, director of the TBI program, notes that the wait-list for care-coordination services is about six months. Last year, the program began providing workshops, classes and other means to serve more individuals waiting for care-coordination services.

These classes cover topics such as budgeting, getting organized, accessing social networks and general life-skills topics. “They have been very successful and have allowed us to provide something to clients waiting for care coordination as well as reach more clients overall,” Dettmer says.

In Colorado each year, about 5,000 people are discharged from hospitals with a diagnosis of TBI. Some 100,000 individuals live with TBI in Colorado.

“Therefore, while we have served approximately 4,000 since 2004, there is potentially a great deal more we can do,” Dettmer observes. She surmises that not everyone with TBI feels a need for care-coordination services, and many people probably are unaware of the Trust Fund Program.

But the need for help is large. The U.S. Centers for Disease Control and Prevention estimates that at least 5.3 million Americans have a long-term or lifelong need for help performing daily activities because of TBI.

Making a difference

Dettmer describes Hernández as an “amazing person” who has performed tremendous service for the brain-injury community.

In fact, the Colorado TBI Program this year established the Theresa Hernández TBI Trust Fund Community Award, an annual honor whose first recipient was Hernández herself.

Besides funding care coordination, the trust fund has also generated several million dollars to support cutting-edge research to improve care and treatment of people with traumatic brain injury.

Hernández herself has conducted some of that research, most recently publishing the results of a study showing that acupressure may be effective in helping to treat people with mild traumatic brain injury.

That is probably because acupressure can relieve stress, and TBI patients are particularly susceptible to stress.

Hernández notes that researchers have learned a great deal in recent decades: “When I started in this field in 1985, long term studies of TBI were rare, if non-existent. … We know things now I didn’t know in graduate school.”

She pursued neuroscience, she recalls, because, “I wanted to make a difference.”

Dillehay says she has. From the TBI Trust Fund Program, he has received text-to-speech software (which has helped him relearn to read). He has also received cranial massage, which he says was quite painful, but which helped his memory and helped him sleep.

Dillehay, who grew up in a poor area in Laredo, Texas, was a top student in high school. Now, he uses speech software that “reads” texts aloud to him. He takes course notes with the aid of a LiveScribe smartpen, which records lectures and will replay sections of the lectures based on the notes taken on sections of special notebook paper.

Dillehay’s life has changed dramatically. “But I can function now. Before, I couldn’t function. I felt like I was in a toilet bowl.”

Now, “It’s like a second life.” In addition to working on his bachelor’s degree, he’s thinking about learning another language, possibly Hebrew or Aramaic. He’s also begun playing classical guitar, which, “turns my mind off and makes me sleep.”

As Dettmer told Hernández, “You are proof that one citizen can make a tremendous impact in the lives of thousands.”

For more information on the Colorado Traumatic Brain Injury Trust Fund, see http://tbicolorado.org.