R
ECOVERY
from the
MINIMALLY CONSCIOUS STATE
 

Terry Wallis, who recovered
 from M.C.S.

By BENEDICT CAREY for The New York Times

Published: July 4, 2006

HARRIET, Ark., July 2 2006. Terry Wallis spends almost all of his waking hours in bed, listening to country-western music in a cramped, two-room bungalow down a gravel road off State Highway 263.

Mr. Wallis, 42, wears an open, curious expression and speaks in a slurred but coherent voice. He volleys a visitor’s pleased-to-meet-you with, “Glad to be met,” and can speak haltingly of his family’s plans to light fireworks at his brother’s house nearby.

For his family, each word is a miracle. For 19 years  until June 11, 2003  Mr. Wallis lay mute and virtually unresponsive in a state of minimal consciousness, the result of a head injury suffered in a traffic accident. Since his abrupt recovery — his first word was “Mom,” uttered at the sight of his mother — he has continued to improve, speaking more, remembering more.

But Mr. Wallis’ return to the world, and the progress he has made, have also been a kind of miracle for scientists: an unprecedented opportunity to study, using advanced scanning technology, how the human brain can suddenly recover from such severe, long-lasting injury.

In a paper being published Monday, researchers are reporting that they have found strong evidence that Mr. Wallis’s brain is healing itself by forming new neural connections since 2003.

The paper, appearing in The Journal of Clinical Investigation, includes a series of images of Mr. Wallis’s brain, the first such pictures ever taken from a late-recovering patient.

The new findings raise the hope that doctors will eventually have the ability to determine which patients with severe brain damage have the best chance of recovering. They might also help settle disputes in cases like that of Terri Schiavo, the Florida woman who was removed from life support and died last year after a bitter national debate over patients’ rights. Ms. Schiavo suffered more profound brain damage than Mr. Wallis and did not show signs of responsive awareness, according to neurologists who examined her.

“We read about these widely publicized cases of miraculous recovery every few years, but none of them — not one — has ever been followed up scientifically until now,” said Dr. Nicholas Schiff, a neuroscientist at Weill Cornell Medical College in Manhattan and the senior author of the new imaging study.

An estimated 100,000 to 200,000 Americans subsist in states of partial or minimal consciousness, cut off from those around them.

On Saturday, Mr. Wallis said he felt good, but he showed no memory of the study. After prompting from his mother, he did remember the trip back from the researchers’ laboratory in New York.

“Gasoline,” he said, referring to a stop the airplane made to refuel. “We stopped for gasoline.”

His mother, Angilee Wallis, said: “He is starting to learn things now. That right there is new.”

In recent weeks, she said, he has also shown hints of self-awareness, alluding to his disabled condition for the first time.

Mrs. Wallis, 58, and her husband Jerry, 62, live with and care for their son in a white clapboard cabin, with a small concrete porch surrounded on all sides by acres of trees. Their house, between Harriet and Big Flat, is among a scattering of such hidden homes, sheds and dirt roads a couple of miles from a highway intersection anchored by two liquor stores. The nearest decent grocery store is 30 minutes away, in Mountain View, Ark.

For the Wallis family, Terry’s accident, his long years of mental absence and his return have been a story of celebrity as well as recovery, of how media attention can strike like a flash flood and just as quickly dry up, leaving families to figure out what all the attention meant, if anything  and whether it was worth it.

He was a lanky 19-year-old in 1984, with a gift for elaborate pranks and engine work, when he and two friends skidded off a small bridge in a pickup, landing upside down in a dry riverbed. The family never figured out exactly what happened. The crash left their son unresponsive, breathing but immobilized, there but not there, said his father.

Terry Wallis showed no improvement in the first year, and doctors soon pronounced him to be in a persistent vegetative state, and gave him virtually no chance of recovery, his parents said.

About 52 percent of people with traumatic wounds to the head, most often from car accidents, recover some awareness in the first year after the injury, studies find; very few do so afterward. Only 15 percent of people who suffer brain damage from oxygen deprivation like Terri Schiavo, whose heart stopped temporarily  recover some awareness within the first three months. A 1994 review of more than 700 vegetative patients found that none had done so after two years.

But at some point after his accident, probably within months, Mr. Wallis, a mechanic before his injury, entered what is called a minimally conscious state, Dr. Schiff said. The diagnosis, established formally in 2002, is given to people who are severely brain damaged but occasionally responsive. In their good moments, they can track objects with their eyes, respond to commands by blinking, grunting or making small movements. They may spend the rest of their lives in this condition, but it is a necessary intermediate step if they are ever to regain some awareness, neurologists say.

Mr. Wallis spent the second 19 years of his life at a nursing home in Mountain View, and family members who visited said they saw plenty of hints of awareness along the way. He seemed to brighten when they walked in his room. Something in his face would tighten when he was impatient or hungry.

None of which made the day he said “Mom” any less thrilling. Ms. Wallis, her voice unsteady, quickly put out the word to the extended family.

Later, the patient had another visitor, a striking blonde woman: his 19-year-old daughter, Amber, who had been 6 weeks old at the time of his accident. “I was so nervous driving over there,” she said. “I was looking in the rearview mirror to check my hair, I swear, I was so worried he wouldn’t recognize me.”

When finally he did, she said, the first sentence he uttered was, “ ‘You’re beautiful,’ and he told me he loved me.”

He was suddenly speaking; it was a transformation. He was still disabled, barely able to move or speak, but he was recognizable as Terry.

The months that followed brought a swarm of other emotions. Mr. Wallis, now considered clinically recovered but still in need of around-the-clock attention, was moved into his parents’ home, shifting much of the financial burden of his care from Medicaid to them.

And the world came knocking. A camera crew from Japan arrived and spent two weeks doing daily interviews and filming. Another crew visited from England. There were talk show appearances, agents, documentary makers, forcing Mrs. Wallis to take time away from her job at a local shirt factory to help her husband, a mechanic and farmer, play host.

But the attention soon dissipated, and a fund his parents established for their son’s care the Terry Wallis Special Needs Trust attracted few substantial contributions, they said.

Their son still needed to be fed, washed, exercised and turned in his bed every two hours, night and day. His daughter took two regular shifts a day to tend to him, and another aide began working with the family.

But in some ways it was like living with a child who never grows up or leaves home: there, out back in the trees, was his old gray Ford van, untouched since 1984; out front was an aluminum boat his father had bought for him, overturned, unused.

In 2004, Dr. Schiff contacted the family, asking if they would allow their son to be studied. He helped arrange to have the Wallises flown to New York in April of that year, and again 18 months later, for brain scanning. A research team from New York, New Jersey and New Zealand spent more than a year analyzing the results, comparing them to images from healthy brains and from another minimally conscious patient who had not recovered.

Using a novel technique, they saw evidence of new growth in the midline cerebellum, an area involved in motor control, as Mr. Wallis gained strength and range in his limbs. Another area of new growth, located along the back of the brain, is believed by some experts to be a central switching center for conscious awareness.

The daily exercises, the interactions with his parents, his regular dose of antidepressant medication: any or all of these might have spurred brain cells to grow more connections, the researchers said.

“The big missed opportunity is that we didn’t know this guy would spontaneously emerge, and we didn’t get to monitor him before then” to find out what preceded it, Dr. Schiff said.

To answer that kind of question in a systematic way, researchers will need to follow more minimally conscious patients for longer periods, experts say. But there is no national system to track such patients, they say, no central database like that which exists for other diseases.

“We don’t see these people. They exist outside of our gaze. We don’t even know where they live,” said Dr. Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital-Weill Cornell Medical Center.

Mr. Wallis, it was clear over the weekend, continues to live for the day. He has a granddaughter now, Amber’s child, Victoria, and the 2-year-old does not seem bothered by the pale man with the dark mustache and the inward-turned arms. He does not feel any physical pain, he told his parents, and he has no real sense of time. He also said recently that he was “proud” to be alive.

“It is good to know all that,” said his father, sitting on the porch on Saturday evening.

“It’s good to hear him say that, because if he didn’t say so, you’d just have no way to know

 

 


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