Work to improve services for people with traumatic brain injury pays off

Robert and Brenda Anderson know how destructive an undetected TBI can be.

By JoLynne Lyon

Robert and Brenda Anderson started attending the Traumatic Brain Injury work group in Logan because they know first hand how destructive an undetected TBI can be.

Brenda sustained a TBI from being rear-ended in a car accident 12 years ago in Arizona. She did not realize that she had lost consciousness, though she could not remember driving to the side of the road. She was X-rayed at the emergency room and told she should be watched for signs of brain injury. “By the next day I didn’t know who my husband was,” she said. Other losses followed:  her marriage, her family, her job.

“Your friends, your family want you to be like you used to be. In my case I don’t remember what I used to be like,” she said.

After her accident, her neurologist thought her difficulties stemmed from post-traumatic stress disorder. CAT and MRI scans did not reveal anything, but a neuropsychological evaluation finally pinpointed the problem.

“A picture of the brain … doesn’t show at the microscopic level what has happened,” said Dr. Wes Spencer, a psychologist at Bear River Mental Health. Another complication is that professionals in smaller towns may be unfamiliar with TBI and its effects. Specialists are usually in larger communities.

Sometimes those who have received a blow to the head might not recognize the severity of their injuries, said Sue Dubois, community TBI coordinator for the Utah Traumatic Brain Injury Partnership Grant at the CPD.

Dubois has set up workgroups in Logan, Brigham City and St. George to discover the needs and concerns of people who have personal and professional experience with traumatic brain injury. As a result, communities in rural Utah have begun to address those needs that the groups identified.

Dubois was recognized earlier this month for her efforts, when the Brain Injury Association of Utah presented her with its 2009 Professional Advocate Award. She and other team members have worked to train health, mental health and vocational rehabilitation professionals about TBI through the CPD’s Interdisciplinary Training Division, directed by Judith Holt.

Dr. Spencer participates in the Logan work group, which pinpointed gaps in services and brought people from different disciplines together to find solutions. They created a brochure to educate employers of people with TBI and came up with a handout advising people what to do if they receive a bump on the head. In addition, two training seminars in Logan and a third in Saint George brought together social workers, to vocational rehabilitation professionals, researchers and marriage and family therapists to learn more about TBI.

Mental health professionals will see people who have an apparent mental illness, but they don’t always ask if the patient has received a blow to the head, Dr. Spencer said. The distinction is important because TBI often doesn’t respond to typical mental health treatments.

The next training that has grown from the work group’s efforts will target first responders, law enforcement and probation and parole officers. “I have always felt that some individuals who have sustained a TBI will enter into the judicial system,” Dubois said. “The person might not realize that their behavior could be out of line.” In addition, an officer might mistake slurred speech, balance problems and inability to answer questions as a sign of intoxication or substance abuse, rather than symptoms of TBI.

The work group is developing a TBI identification card that will be beneficial not only for individuals with TBI but for others who want to avoid misunderstandings. The use of the TBI ID card will be completely voluntary and would provide the persons name, possible symptoms that might be exhibited, and two emergency contacts.

Sometimes a TBI manifests itself months or years after it was sustained. It can cause memory loss and agitated or aggressive behavior. It can also strike emergency workers themselves, whose jobs put them at risk of being assaulted or shot.

Robert Anderson said he sustained multiple concussions growing up, from abusive foster families and stepparents, a car accident, high risk sports and his job as a military policeman. The effects of these injuries were cumulative. He learned to hide his shaking hands by holding them together, but when he reached his forties he was no longer able to conceal his condition. He was working as an adult probation and parole officer in Arizona when his memory problems became so severe he would forget his supervisor’s instructions before he could carry them out. He could not hold down a job and struggled as he was labeled a loser.

 “You’re accused of faking it, or being lazy,” said Brenda.

She and Robert met and married. It has been liberating for both of them to share their experience, with each other and with people who are looking for ways to improve services for people with TBI. Together they have worked to raise awareness, first in Arizona and now in Utah.

It’s a big change for Robert, who hid his brain injury for years. “I’ve gotten over it now,” he said.

Sue Dubois recently received the Brain Injury Association of Utah's 2009 Professional Advocate Award.

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