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Neurology Now:
doi: 10.1097/01.NNN.0000267372.81559.31
Department: AAN PATIENT ADVOCACY

A Magazine Begets a Mission

VALEO, TOM

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Tom Valeo is a science and medical writer whose articles have appeared inScientific American and WebMD.

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Abstract

The Push for Excellence in Care for Traumatic Brain Injury

Tom Lupfer could have read the magazine, and just filed it away with all the others he had scanned over the years about traumatic brain injury.

But a light bulb went off in his head when he read the Special Report on brain injury in Neurology Now [September/October]. The article about a veteran recovering from his wounds predicted that traumatic brain injury might become the “signature wound” of the Iraq war. And Editor-in-Chief Robin L. Brey, M.D., quoted a researcher who said, “There are a lot of walking wounded who may look fine on the outside, but on the inside, they're not the same person they were prior to the injury.”

“When I read that I thought, that's our son Doug,” says Lupfer. “We experienced all those issues with his traumatic brain injury.”

Doug was not a vet. But Lupfer was so moved by the Special Report that he sent a copy to Texas Congressman Chet Edwards, who had fought to keep the Waco Veterans Affairs (VA) Medical Center in Texas from closing due to budget cuts.

Lupfer thought: The hospital already is a Center for Excellence for treating post-traumatic stress disorder. Why not make the hospital into a Center for Excellence for traumatic brain injury too?

He recalled the long journey his son had made. Early one morning in the summer of 1995, shortly after he started working at his father's construction company, Doug was installing the roof on a metal warehouse in Waco, Texas. Dew had formed overnight, and as he walked across a metal panel Doug's feet slipped out from under him and he fell 16 feet to the concrete floor below.

The fall, the swelling, and an operation to reduce the pressure on his brain by removing a 4-inch piece of his left frontal lobe left him mute and semi-conscious. Only through a year of therapy was he able to learn all over again how to talk, walk, tie his shoes, drive a car, and perform other mundane tasks. Despite the improvement, Doug would be changed forever.

“My memory's not what it used to be,” says Doug. “I don't see anything coming toward me from the left, which makes a huge difference in driving. I have to physically turn and look to the left because I don't have any peripheral vision there.”

He also has some trouble “staying on task,” says the elder Lupfer. “If you say to him, ‘Doug, drive down to the store and get a quart of milk,’ he may not come back for an hour, even though the store is just 5 minutes away. He'll leave and suddenly something else seems more important to him. He might go and visit someone. He just needs a little extra supervision.”

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In his letter to Rep. Edwards, Lupfer asked: “With an estimated 80,000 people per year sustaining long-term disabilities from traumatic brain injury and many more young military personnel being affected by this injury in the Iraq war, couldn't we dedicate some of our efforts and resources to improving the treatment and assistance to those who need care and support?”

That effort may well have paid off. Rep. Edwards, while recovering from throat surgery in January, e-mailed that he remembered Lupfer's letter. “Research on traumatic brain injury should be a high priority for both Veterans Administration and Department of Defense medical research programs, since the incidence of traumatic brain injury is so high in Iraq and Afghanistan,” Rep. Edwards wrote. “I don't have enough facts to know whether the Waco VA hospital would be a good option for a traumatic brain injury Center of Excellence, but I will ask VA medical officials about this option as we put together a plan for the future of the Waco VA.”

Tom Lupfer will continue gathering facts too, because he now knows that a letter and a stirring story can sometimes make a difference for others who, like his son, must struggle every day with traumatic brain injury.

“There's a lot that can be done for them,” he says. “So I'm going to push harder now and see if we can't move this forward.”

©2007 American Academy of Neurology

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