- The Washington Times - Saturday, July 12, 2003

Antonio Uribe lies very still on a hospital bed in the middle of a Victorian home in Manassas. Remarkably handsome, he has limpid brown eyes with black lashes that look as if they’ve been touched up with a curling iron.

When he moves, it’s the flex of his left arm, perhaps, or the upturn of a cheek and lip into a smile.

“When we first brought him home it was like having a new baby,” says his mother, Geri. “You feel like you’re starting over with a new relationship. You’re listening for every sound, looking for every movement. We were hoping we’d get the quick miracles. But now we keep getting the little ones — like the first time he smiled, the first time he turned to look when you said something to him, the first time we gave him a comb and he knew to take it up to his hair.”

He is not a new baby. He’s a 19-year-old who should be a college sophomore now, pitching a game of his beloved baseball, goofing around with one of his five siblings.

Mr. Uribe, however, has suffered a traumatic brain injury, sustained 20 months ago in a car crash that left the driver and the other passenger, his old high-school buddies, dead. The lives of Mr. Uribe’s entire family changed at the moment of impact.

Brain injury is a devastating intrusion into the lives of many Americans. For survivors, it can wreak havoc on concentration, memory, judgment and mood. It might rob its victim of strength, coordination and balance, and compromise senses such as vision and touch. It might bedevil the survivor with emotional difficulties ranging from instability to impulsivity.

The Centers for Disease Control and Prevention estimates that 1.5 million people nationwide sustain a traumatic brain injury, via an external force such as a car crash or fall, every year. Two percent of the population — 5.3 million people — have suffered consequences of that injury severe enough to classify them as disabled. Millions of others are permanently disabled by other types of acquired brain injury, such as strokes and tumors.

As further insult, brain injury blights families, devastates personal finances and exhausts community resources.

Though it occurs more frequently than breast cancer and AIDS, brain injury is not recognized as a massive public-health problem, says Allan I. Bergman, president and chief executive officer of the Brain Injury Association of America, a nonprofit organization based in Alexandria.

“We still have a major public awareness problem,” Mr. Bergman says. “I think it’s because brain injury is not genetic, it’s not contagious, and therefore we get caught up in the semantics of the language, ‘This is an accident and there’s nothing I can do about it.’ That’s why brain injury is called ‘The Silent Epidemic.’”

People need to care, he says, because brain injury does not discriminate.

“This could be any of them or their family members,” he says. “In an instant, literally, a person’s life is dramatically changed as is the life of their family. None of us know when our number is up.”

‘Two different people’

The Uribe family certainly didn’t know about this silent epidemic, this thing called brain injury, before Nov. 10, 2001.

“We got that parents’ nightmare call,” says Mrs. Uribe, a homemaker. “The accident was on Interstate 81. We knew it had to be bad, and it was.”

That early morning crash, and Mr. Uribe’s resulting brain injury, created a new reality for the family, one of life-and-death decisions, hospitals, doctors, insurance issues, medications. The Uribes learned that the nerve cells within the brain resemble connecting wires. If the lines are damaged, the brain must use other pathways to transmit information.

Those pathways, however, already are being used in some other process, says Dr. Gregory O’Shanick, medical director of an outpatient neurorehabilitation program in Richmond and the national medical director for the Brain Injury Association of America.

“It’s a road that’s already being traveled by traffic,” he says. “That results in a slower speed of information processing.”

Some brain injury victims, such as Mr. Uribe, are severely compromised by their trauma. Others, such as Martha Berg of Arlington, can function well in the community despite experiencing enduring changes.

In fall 1996, Ms. Berg, a hotel regional director, noticed that she seemed to be losing her hearing in one ear. Doctors eventually diagnosed a spontaneous growth. A brain tumor. Following surgery to remove it, the entire right side of her body shut down, says Ms. Berg, who is in her late 40s.

“At first, I could not walk or talk. My goals used to be to ascend the corporate ladder. That changed to choosing my outfit for the day or just staying awake,” she says.

Battling through months of therapy, including vision, speech, occupational and physical, Ms. Berg has been able to regain much of her independence but not her spontaneity, stamina or balance. Some aspects of her former personality are only a memory now.

Husband Jeff Kraus jokes that he has had two wives and one marriage. It’s a marriage that has thrived — with twists, turns and detours — for 23 years.

“There’s so much of Martha still inside, but it’s like two different people in some respects,” says Mr. Kraus, a State Department computer specialist. “I think that’s the hardest part for the survivors, to make peace with the change.”

Many family members struggle indeterminately with acceptance, says Karen Brown, executive director of Brain Injury Services (BIS), a Northern Virginia nonprofit organization that provides community-based services to survivors of brain injury and their families.

BIS serves 500 persons per year; 100 are on the waiting list to receive services such as life-skills training, socialization and speech therapy. Most BIS services are funded via county or state coffers as well as individual donations.

“After a brain injury, the family constellation can change drastically and impact the original roles of the injured person within the household. Families feel so isolated and alone in this endeavor,” Ms. Brown says.

The couples who withstand the trauma usually have been together longer and had a good relationship before the injury, Ms. Brown says.

“But with the younger people — they don’t want to go the rest of their lives having to be a caregiver, because that’s what they actually become,” she says. “You’re looking at someone who has impaired judgment, and sometimes you’ve taken on someone for whom you have to provide as much support as one of your small children.”

Redefining the future

Kathy and Dennis Keller of Ashburn were delighted at the birth of their blond, hazel-eyed son, Garrett, in 1997. But just days later, the baby went into cardiac arrest and doctors diagnosed a congenital heart defect.

At 15 months of age, Garrett suffered a stroke following a surgery to treat his heart defect. When they learned the toddler had lost a quarter of his brain to stroke trauma, the Kellers knew their son’s future would be redefined.

The residual effects for Garrett, now 6, include short-term memory loss, peripheral blindness in his right eye and weakness throughout his entire right side, especially in his right arm, which his parents have named “Helper Hand” to help their son accept the limb’s limitations.

Then there are the behavior issues.

“It’s all extremes,” Mrs. Keller says. “Attention is one problem. He either will over- or under-focus. He gets very, very angry, and then very, very happy, like a puppy.”

Garrett suffers from anxiety and will pick his skin until it bleeds. If the family is in a restaurant and Garrett hears a person laughing several tables away, he sometimes assumes the laughter is directed at him. He was kicked out of kindergarten three times during the school year.

Garrett’s brain injury is a constant challenge for the entire family, which includes brother Matthew, 3.

“I struggle all the time with this,” Mr. Keller says. “We send our kids out to make their own way. I send Garrett out, but he doesn’t have the same tools everyone else has. That’s a constant sadness for me.”

‘Life is really, really hard’

It’s the first Thursday evening of the month, and members of the Northern Virginia Brain Injury Association support group introduce themselves to visitors in a Falls Church high school classroom. Some allowing tears to flow freely, they speak solemnly and sometimes haltingly, but with determination.

There’s Ray Maxwell, a former telephone repairman, who fell off a ladder doing his job. Jane Kachulis, who says she took a handgun “and tried to blow myself away.”

Judy Connell, hit by a truck 13 years ago as a pedestrian, says she hears every sound at equal volume.

“The fan over there, you talking, those papers rustling over there,” she says. “Since there’s so much I try to tune out, I get tired really easily. Life is really, really hard. It’s always challenging and exhausting.”

Ms. Connell comments that financial catastrophe typically accompanies a brain injury. She is not exaggerating.

Thousands of people are permanently disabled by brain injury every year, according to the CDC. The fallout can cripple a career or even wholly remove a victim from the workplace. Ms. Berg, for example, traded her executive position for a less challenging job as an administrative assistant at a church.

After a time, survivors who have worked at least 40 quarters sometimes can qualify for Social Security Disability Insurance; children or those with a spotty work history might receive Supplemental Security Income, which can come with a Medicaid benefit.

Caregivers often have to sacrifice their employment, as well. Garrett’s father resigned his teaching position this year — for the third time in five years — to care more closely for his son, and Mr. Uribe’s mother has given up her part-time job as a bookkeeper to be more available at home.

But the availability of cognitive-rehabilitation services perhaps is a more compelling issue than income. Ongoing cognitive therapy, which people with brain injury and their advocates say they need to experience an optimal recovery, is aimed at helping patients restore high-level brain functions or compensate for losses.

New Jersey neuropsychologist Keith Sicerone and his colleagues at the American Congress for Rehabilitation Medicine, a nonprofit organization that promotes rehab research and technology, studied the recent literature about the effects of cognitive rehabilitation on traumatic brain injury and stroke. They discovered a “fairly strong trend to suggest that cognitive rehabilitation will work well after the period of early neurological recovery,” Mr. Sicerone says.

But that claim doesn’t parallel the reality of the average health-insurance contract, which usually provides post-hospital rehabilitation therapy within a strictly defined window, 60 days following first treatment after hospitalization, for example.

“Policies are written for broken legs,” Mr. Sicerone says. “You break your leg and you get rehab until your leg is better. They’re not written for brain injury, where the problems adapting to life can go on for years. These are lifelong conditions, conditions that do need an extended period of rehabilitation to allow people to function in their daily life.”

Health insurers see their rehabilitation benefits as finite, and that’s a problem, says Mr. Bergman of the Brain Injury Association.

“The health-insurance industry is working from a paradigm that is not useful to individuals with catastrophic injury,” he says.

The public, however, lays the responsibility for care at the door of the insurance companies, some insurance executives say.

“We’re finding that coverage follows two things: evidence and the employers’ willingness to pay for something,” says Susan Pisano, spokeswoman for the American Association of Health Plans. “You find employers want to embrace the services and treatment when there is proof that they work.”

In October 2002, the Blue Cross/Blue Shield Association, based in Chicago, reviewed four major recent studies on the effects of cognitive rehabilitation for adults with brain injury, spokesman Brian Crawford says. Researchers found some evidence supporting cognitive rehabilitation as an effective measure, but those findings were mitigated by others that failed to show any beneficial results, he says.

“Health-insurance premiums are rising dramatically again,” Mr. Crawford says. “We have to make difficult decisions based on scientific evidence, and when we don’t use scientific evidence — when we use hunches or perceived benefits that aren’t supported by data — we’re asking everyone to endure higher health-care costs. At a certain point, people have to make that connection.”

Even so, Texas last year became the first state to require health insurers to reimburse patients for all cognitive rehabilitation. Legislators in several other states are considering similar laws.

Beyond insurance, some survivors of brain injury qualify for Medicaid-provided therapies and assistance. Several state and county programs also offer attendant care, usually administered through their state human-service agencies.

But treatment is only one component of a complex group of services crucial in helping a person with brain injury re-enter the community, says Ms. Brown of BIS.

“People need some type of support to learn the very basic skills to renegotiate their world,” she says. “But one of the most important things across the United States right now is that there is very little money in community-based services. In some states, case management and support services are nonexistent; therefore, many individuals and families are falling between the cracks.”

The future in brain injury

Stronger advocacy and advances in treatment improve the forecast for those with brain injury, their families and their communities, says Mr. Bergman of the Brain Injury Association.

Innovations include a sophisticated technology called functional imaging, which extracts detailed data about physical and chemical phenomena from patients with brain injury. This technology is important because it allows clinicians to see brain activity or the lack thereof during the recovery and rehabilitation process, Mr. Bergman says.

The practice of monitoring intracranial pressure, which significantly reduces the amount of ongoing damage to the brain by allowing neurosurgeons to determine the timing and the necessity for a variety of interventions, is becoming a well-established clinical option as well.

On the research front, patients with brain injury will undergo clinical pharmacological studies to determine if any current drugs might enhance recovery, learning or memory. The National Institutes of Health’s National Center for Medical Rehabilitation research has contracted with eight major medical centers, each of which will provide at least 100 patients in this five-year study.

In spring 2001, Rep. Bill Pascrell Jr., New Jersey Democrat, and Rep. James C. Greenwood, Pennsylvania Republican, established the Congressional Brain Injury Task Force to educate members about brain injury.

Recent events include a push to build up CDC capital to support outreach activities, which will yield a database of brain-injury populations, pieces needed to fit into the public-policy puzzle. Increases in appropriations for state governments will fund the development of services specifically for people with brain injury.

In addition, task force members have worked closely with the Department of Veterans Affairs to increase appropriations for the Defense and Veterans Head Injury Program, which annually cares for 12,000 active-duty personnel and veterans with brain injury, Mr. Pascrell says.

“The families of people with brain injury have many more reasons to be hopeful in the future,” he says.

Mrs. Uribe agrees.

“As bad as things look, the brain has such amazing healing power that it leaves room for a lot of hope and chance of recovery,” she says. “You really have to be positive and look at the good things. Tonio’s still there, in his spirit. You know he’s there. You just hold on to that hope and learn to be thankful for what you have.”

More info:

Books —

• “Where Is the Mango Princess?” by C.E. Crimmins, Vintage Books, 2001. The author writes about the life-changing experience of the brain injury sustained by her husband, Alan, in a boating accident.

• “Confronting Traumatic Brain Injury: Devastation, Hope, and Healing,” by William J. Winslade, Yale University Press, 1999. Using case studies, the book explains traumatic brain injury, how it is caused and what can be done to treat, cope with and prevent it.

Associations —

• Brain Injury Association of America, 105 N. Alfred St., Alexandria, VA 22314. Phone: 703/236-6000. Web site: www.biausa.org. The nonprofit organization is devoted to improving the quality of life for those who have sustained brain injuries; it serves as a clearinghouse of information and resources, and participates in legislative advocacy and education. Visit the Maryland affiliate’s Web site at www.biamd.org or Northern Virginia’s at www.nvbia.org. The District contact, Karen Tyner, can be reached at 202/877-1464.

• Brain Injury Services Inc., 8136 Old Keene Mill Road, Suite B102, Springfield, VA 22152. Phone: 703/451-8881. Web site: www.braininjurysvcs.org. The mission of the organization is to support survivors of brain injuries and their families with individualized case-management services, education and advocacy.

Online —

• The Jason Foundation (www.jasonfoundation.org) is a nonprofit organization founded in honor of 11-year-old Jason Rooker, who suffered a traumatic brain injury at age 10, and is dedicated to providing resources and support for families and loved ones of people who have suffered a brain injury.

• ThinkFirst National Injury Prevention Foundation (www.thinkfirst.org) is a nonprofit group that works to prevent brain, spinal cord and other traumatic injuries by educating individuals, community leaders and policy-makers.

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