Living with Brain Trauma

Most of the 1.5 million Americans who sustain head injuries each year recover in a brief time and do not suffer long-term effects. Still, according to the CDC, some ninety thousand people a year who sustain brain trauma will suffer long-term, possibly life-long, disabilities.

Many of them will develop symptoms of dementia—a progressive decline in their ability to think, solve problems, communicate, and recall information. Dementia is closely linked to Alzheimer’s disease, a fatal brain disorder mostly associated with increasing age (sixty-five and older). Many advanced-stage Alzheimer’s patients require round-the-clock care in nursing facilities because eventually their basic cognitive functions are lost—they cannot recall their own names or recognize the faces of loved ones, and in many cases can no longer use utensils to eat, brush their teeth, use the toilet, or bathe themselves.

Researchers now believe serious head injury increases a person’s risk of developing Alzheimer’s disease. Indeed, many brain trauma patients start exhibiting similar symptoms at a much younger age than the average onset of Alzheimer’s. As they spiral into the fog of dementia, routine daily activities become more and more of a challenge. Simple tasks will eventually become very difficult. Their lives and the lives of their family members, who must take care of them, will change for- ever. A report by the CDC summarizes the impact of serious impairment caused by early-onset Alzheimer’s or by traumatic damage to the regions of the brain responsible for cognitive function:

A traumatic brain injury may permanently alter a person’s career or vocational aspirations and may also have profound effects on social and family relationships. In part, impairment of cognitive function may result in loss of communication skills and memory, inability to organize tasks and solve problems, and decreased attention to detail. TBI may also cause emotional instability—especially impulsiveness—and changes in the ability to see, smell, and hear.³¹

Not all TBI patients develop dementia. Many develop other symptoms that are less serious than dementia, such as migraine headaches and insomnia, but even subtle or more manageable symptoms can have a profound effect on a person’s life if the condition is chronic or the impairment is progressive. Some patients experience psychological changes: the onset of depression or a change in personality, a tendency to be short-tempered or overemotional, reacting to minor problems with fits of anger or sobbing. The most extreme cases are represented by patients whose brain function is so impaired that they have lapsed into permanent comas or similar vegetative states—unable to see, hear, or respond to others. Some patients exist in these states indefinitely; others stay alive only with the help of ventilators or other artificial life support.

Punch Drunk

Two of the most well known examples of the effects of brain trauma are Muhammad Ali and Jerry Quarry. Both famed boxers enjoyed long and illustrious careers but both have suffered from long-term consequences of brain atrophy—wasting away of brain tissue—caused by the repeated poundings they took in the ring.

Quarry was a tough, rawboned scrapper who boxed professionally for eighteen years, compiling a 53–9–4 record. Looking back over his career, some experts speculate that he spent too long in the ring. Even before he retired from boxing, Quarry was already displaying symptoms of dementia. But he kept boxing, finally retiring after a knockout in 1983. Quarry returned to the ring once more in 1992 at the age of forty-seven—in which he took a brutal pounding over six rounds at the hands of cruiserweight Ron Cramner, sixteen years younger than Quarry.

In 1995 Quarry was inducted into the World Boxing Hall of Fame. By then he was so disabled that he could not remember his name to sign autographs. Linda Rogers, director of the Southwest Institute for Clinical Research in California, where Quarry was a patient, remarked, “Jerry doesn’t know where he’s at or what month or day it is. When you ask him, his response is, ‘It’s not important to me.’ He can’t recall three items three minutes later.”³² His brother James added, “He hallucinates, he hears voices. When he walks off, we have to go find him. Sometimes, we can’t find him, and we have to call the police and they bring him back.”³³

Quarry died in 1999 at the age of fifty-three. His brain trauma eventually led to organ failure. Doctors said the cause of death was dementia pugilistica—brain damage by repeated blows to the head, commonly called punch-drunk syndrome. Boxing was first linked with brain damage in 1928 when physician Harrison S. Martland published a paper in the Journal of the American Medical Association comparing the physical symptoms of former fighters to those of intoxicated individuals. Martland referred to the former fighters as “punch drunk” and found that they had trouble walking and suffered from short attention spans, poor memories, and slurred speech. In 2007 Stanley M. Aronson, the former dean of Brown University Medical School in Rhode Island, stated:

The image of the “punch drunk,” “slap happy,” “slug nutty” former boxer entered the mainstream of motion pictures as a type of comic relief. Such cinematic characters were portrayed as fundamentally happy and carefree. Martland’s remorseless data, however, showed that this syndrome was proportional to the number of bouts engaged in by the victim. The more the number of bouts, the greater the likelihood of enduring brain injury.³⁴

Of course, there was nothing carefree about the Quarry case. Throughout the former boxer’s ordeal, the Quarry family bore the burden of Jerry’s care. Sadly, the family’s burden became even heavier—Jerry’s younger brother Mike was also a professional boxer and, like Jerry, also suffered from dementia pugilistica. He died in 2006 at the age of fifty-five, spending the final years of his life in nursing homes. About three months before his death, he lost the ability to walk and talk. “His brain was atrophying in many areas,”³⁵ said Robert Pearson, Mike Quarry’s brother-in-law.

Parkinsonism and Muhammad Ali

During his career Jerry Quarry fought Muhammad Ali twice, losing both times. Indeed, Quarry was among a long list of boxers who challenged Ali during the 1960s and 1970s, only to lose to the fighter who called himself “the Greatest.” Many boxing experts agree that Ali is the greatest heavyweight in the history of the sport. He rose to fame in 1960 when he won a gold medal at the Olympic Games in Rome, Italy. Soon after the Olympics, Ali turned pro and went on to compile a 56–5 record during a twenty-one-year career that made him one of the most recognizable people in the world.

Boxing experts and medical professionals alike also agree that Ali, like Quarry, spent too many years in the ring. In one of his last bouts, fought at the age of thirty-seven, he took a vicious pounding from heavyweight champion Larry Holmes. The fight was so one-sided that Holmes begged the referee to stop the bout. As legendary sportscaster Howard Cosell described the fight:

Ali had convinced a lot of people that he could really whip Larry Holmes and win the heavyweight title for the fourth time. I wasn’t one of them, and I told Ali so. There was no way Ali was going to beat Holmes, and he was a fool for trying. His speech was already slurred from the beatings he had taken through the years. He walked awkwardly. His hands seemed unsteady, and there was often a vacant look in his eyes. . . .

It’s hard to describe the terrible feelings I had covering that fight, watching Holmes reduce Ali to rubble. He was the Greatest, and what an awful thing it was to watch him slumped and battered in a humiliating defeat.

Thinking back on it now, I am certain Ali’s fight with Holmes exacerbated Ali’s physical problems. In the years that followed, whenever we chanced to meet, it was practically impossible to carry on a cogent conversation with him.³⁶

Indeed, soon after the Holmes fight Ali started displaying symptoms of parkinsonism—a syndrome similar to Parkinson’s disease that includes slowed and slurred speech, muscle tremors, and rigid muscles—the result of the brain trauma he suffered in the ring. The syndrome is somewhat different than dementia pugilistica. In Quarry’s case, the repeated blows to the head likely caused numerous concussions as well as actual shrinkage of the brain. Furthermore, Quarry’s dementia and Alzheimer’s-like symptoms were caused by a buildup of a chemical, beta-amyloid, in his brain. In Alzheimer’s patients, the chemical acts like a sticky plaque that covers the brain cells, prohibiting the neurons from transmitting messages to one another.

In Ali’s case, the repeated blows to his head are believed to have diminished the number of cells in his brain that produce dopamine, the chemical that carries messages from cell to cell. Neurological research has shown that the brain contains many more neurons than it actually needs—it is nature’s way of preserving cognitive abilities as people grow older and lose brain cells during the normal process of aging. In Parkinson’s disease, the cells die much quicker, which means less dopamine is produced by the brain, leaving relatively young people fewer neurons than they need to maintain normal cognitive abilities. Ali’s symptoms did not evolve through Parkinson’s disease, but since the symptoms are similar he is said to suffer from parkinsonism.

One of the reasons Ali boasted of being the greatest of all time is that he was never knocked out in the ring. With skill, speed, savvy, and luck he managed to avoid the type of blow that could render him unconscious. But he absorbed many lesser punches that, on a cumulative basis, may have been more devastating than a single knockout punch. “Repetitive subconcussive blows are more damaging in the long run than occasional knockout blows,”³⁷ wrote the authors of a 1984 study linking parkinsonism to boxing.

Ali lives quietly at his home in Scottsdale, Arizona. He takes a variety of medications to help control his parkinsonism symptoms. He still receives fan mail and answers many of the letters, painstakingly signing autographs with trembling hands. His speech is so slurred that he is incapable of communicating with others. Family members say he spends his days watching videos of his fights. His wife Lonnie Ali says, “People are naturally going to be sad to see the effects of his disease, but if they could see him in the calm of his everyday life, they would not be sorry for him. He’s at complete peace.”³⁸

Depression and Rage

As the cases of boxers Muhammad Ali and the Quarry brothers show, repeated blows to the head can have a variety of devastating effects on the brain and lead to a dramatic decline in the quality of life. The high-profile stories of athletes in other contact sports have drawn attention to other debilitating consequences of traumatic brain injury. Though he was not a boxer, former Pittsburgh Steelers lineman Mike Webster was also diagnosed with dementia pugilistica. During a sixteenyear career Webster played on four Super Bowl championship teams; when he was inducted into the Pro Football Hall of Fame in 1997 he was already showing signs of dementia, including memory loss and short attention span.

Since his retirement from the NFL in 1990, Webster had been unable to hold a job and was occasionally homeless, sleeping in his car or in bus stations. He was also showing signs of clinical depression, characterized by feelings of sadness, hopelessness, and inadequacy. People who suffer from depression often can’t summon the energy to rise from their beds. In 1999 Webster was charged with forging a prescription to obtain an antidepressant drug. Finally his son Garrett took him in; by then, Webster was so troubled by depression that he often couldn’t lift himself off the couch. “He has some brain injuries from football,” Garrett Webster said. “I have to take care of my dad.”³⁹ Mike Webster died in 2002 at the age of fifty. The cause of death was listed as a heart attack but the ex-player’s death certificate also noted that he suffered from “chronic concussive brain injury.”⁴⁰

Brain trauma may also have played a role in the violence involving popular Canadian professional wrestler Chris Benoit in 2007. Born in Montreal in 1967, Benoit rose to Extreme Championship Wrestling stardom as the Canadian Crippler. His signature move was the diving head-butt: To finish off his opponent, he would climb to the top of the ropes and launch himself headfirst from 10 feet (3m) or more into his hapless adversary. He performed the stunt some two hundred times a year over the course of a twenty-two-year career.

In 2007 Benoit, his wife, and his seven-year-old son were found dead in their home; Benoit had murdered his family before taking his own life. Toxicology reports revealed a wide range of narcotics and performance-enhancing substances, such as steroids, in Benoit’s body, which led many to charge that Benoit had gone on a murderous rampage as a result of steroid abuse. Doctors have long linked steroid abuse to a personality disorder called “roid rage,” which provokes anger and violent hostility in the user.

But physicians who examined Benoit’s brain tissue came to a different conclusion. Benoit’s brain was severely damaged, doctors said, with similarities to the brains of other multiple-concussion athletes who harmed themselves or others. The doctors argued that Benoit’s deadly violence could have been a consequence of the many concussions he suffered over the years. “We have always believed that people generally recover from concussions,” says Bennet Omalu, the pathologist who examined Benoit’s brain tissue, “but what we’re finding is that some people may never really recover from recurrent concussions. . . . The damage is in your tissue.”⁴¹

Writer Chris Nowinski, an advocate for athletes who have suffered brain trauma, looks at the effects of TBI on Mike Webster, the Quarry brothers, Muhammad Ali, and others and wonders whether he will suffer the same fate. Nowinski played football at Harvard University, then started a career as a professional wrestler. Along the way he sustained six concussions, forcing him to retire from wrestling after just three years in the business. As this is written, Nowinski’s symptoms are not as severe as those suffered by other TBI patients, but he experiences migraine headaches, insomnia, mild depression, and occasional sleepwalking episodes. He thinks his symptoms may eventually become debilitating. “I have certain symptoms that are permanent and will probably get worse,” Nowinski says. “Who knows how fast?”⁴²

Personality Disorders

TBI can lead to mental illnesses. In addition to depression, TBI patients may also find themselves afflicted with personality disorders, mental illnesses that can change people from easy-going and friendly to suspicious, introverted, and unfriendly. Another former NFL star, Justin Strzelczyk, retired in 1998, evidently in perfect health. Within a few years, however, friends and family members started noticing a change in Strzelczyk’s personality—formerly friendly and easygoing, he now seemed quick to anger. During conversations he became fixated on certain topics and would refuse to drop them. Moreover, his conversations became long and rambling, and he also confided to friends that he was having trouble sleeping and was hearing voices in his head. In addition, Strzelczyk harbored irrational fears, believing the government was spying on him.

In 2004 Strzelczyk got into his pickup truck and started driving. Hundreds of miles from home, he began speeding and driving erratically. Police chased Strzelczyk’s truck for some 40 miles (64km) at speeds approaching 90 miles (145km) per hour. Finally the chase ended when Strzelczyk rammed his vehicle into a tanker truck. He was killed instantly. The autopsy on Strzelczyk’s body reported evidence of dementia pugilistica. In Strzelczyk’s case, the symptoms manifested themselves in a dramatic change in the ex–football player’s personality.

Army National Guard veteran Alec Gless also developed a personality disorder after he sustained a head wound in a truck crash in Iraq. At first Gless’s injury didn’t seem severe—an MRI scan did not reveal serious brain damage. Soon after returning to his home in Cannon Beach, Oregon, however, the formerly easygoing Gless became moody. Army doctors diagnosed Gless with post-traumatic stress disorder, an anxiety disorder prompted by memories of traumatic events that is a common ailment among veterans of warfare. But then Gless’s memory started failing him—he bought a car and three days later forgot he made the purchase. After reexamining Gless the army doctors changed the diagnosis to TBI.

To make it through the day, Gless has to leave notes to himself around his home, reminding him what he needs to do. His social skills and ability to communicate with others also have degenerated and his moodiness persists. “It’s like raising another kid,” said Gless’s wife, Shana. “We might think something like, ‘That’s an ugly shirt,’ but we wouldn’t say it. Alec would. It’s almost like being with somebody who is drunk.”⁴³

Minimal Consciousness and Unconsciousness

As TBI patients like Gless struggle to overcome and adjust to their disabilities, other TBI patients are so severely injured by accidents, warfare, or strokes that they lack even the consciousness to begin the struggle. These saddest of all TBI cases include people who remain in comas as well as similar conditions doctors identify as a persistent vegetative state (PVS) or a minimally conscious state.

A coma is a deep state of unconsciousness. A comatose patient is alive but unable to move parts of his or her body or otherwise respond to others. Many coma patients require life support equipment such as ventilators to stay alive.

Patients in a persistent vegetative state exist on a level of consciousness just slightly above a coma. Patients experience wake and sleep cycles but have no awareness of what is going on around them. Steven Laureys, a coma researcher at the University of Liége in Belgium, states:

These patients can usually breathe without technical assistance and can make a variety of spontaneous movements—such as grinding teeth, swallowing, crying, smiling, grasping another’s hand, grunting or groaning—but these motions are always reflexive and not the result of purposeful behavior. Typically, patients will not fix their eyes on anything for a sustained period, but in rare instances they may briefly follow a moving object or turn fleetingly toward a loud sound.⁴⁴

In many cases, the families of patients who remain in comas or persistent vegetative states must make end-of-life decisions for their loved ones. Many people prepare for the possibility that they will be unable to communicate their wishes directly in case of a medical emergency—they draft documents known as living wills or advance directives in which they state what kind of treatment they do or don’t want, and authorize another person to legally represent them in medical decisions. Many advance directives request family members to withhold or stop life-sustaining measures should an illness or accident leave the patient in a coma or PVS from which there is no chance of recovery. Such cases usually involve disconnecting a ventilator and allowing a patient who cannot breathe on his or her own to die, or disconnecting a feeding tube.

What Is Brain Dead?

The moment of death was historically understood to be the moment heartbeat and breathing stopped. Advances in medicine, however, make that definition problematic, because CPR (cardiopulmonary resuscitation) and defibrillation can sometimes restart a stopped heart, and life can sometimes be sustained by organ transplants or life-support devices even without a functioning heart or lungs. Today physicians and medical ethicists define biological death as “brain dead”—the moment electrical activity in the brain stops, irreversibly. The designation was established in 1968 by a Harvard Medical School committee trying to define irreversible coma. When life-support systems could maintain heart and lung function indefinitely, doctors needed a new legal definition of death that would enable them to declare a person dead and remove organs for transplant.

Several medical criteria must be met for a person to be declared brain dead. A physician will observe a patient’s pupils to determine whether they still open and close in response to light; prod the patient with a needle or use other stimuli to determine whether the patient responds to pain; determine that the lungs can no longer draw breath without the help of a ventilator; and, finally, perform measurements of electrical activity in the brain through two EEG tests, which are administered at least twelve hours apart. Evidence of no electrical activity in the brain is generally accepted as the final confirmation that the patient is brain dead. At that point, doctors may harvest the patient’s donated organs, which have been continuously supplied with oxygen by a ventilator, maximizing the chance for successful transplantation. Following the procedure to harvest the organs, the ventilator is removed from the body.

The most famous TBI case of this kind on record involved the fate of a Florida woman, Terri Schiavo, who remained in a PVS for fifteen years. In 1990 Schiavo suffered catastrophic brain damage when oxygen was cut off to her brain following a heart attack. She had no living will; diagnosed as being in a PVS, she spent most of the next fifteen years in skilled nursing facilities nourished by a feeding tube. In 2005 an appellate judge ruled that Schiavo’s husband could authorize the removal of her feeding tube, after a long and bitter court battle with Schiavo’s parents, who believed she still had a chance of recovering. An autopsy revealed substantial irreversible damage to all brain regions; nevertheless, the Schiavo case sparked controversy over the rights of PVS patients.

Patients who are diagnosed with minimal consciousness exist on a level just above the persistent vegetative state. In this condition, patients exhibit very minor signs of consciousness and awareness. They may be able to make the smallest of deliberate movements, such as a small verbal sound or motions with fingers. They can respond to language and can fix their eyes on the movement of objects and obey simple commands, but they cannot communicate with others.

The Right to Die

A document known as a living will or advance directive is a legally accepted way for a person to accept or decline medical treatment if he or she lapses into a coma or persistent vegetative state and cannot communicate directly with medical personnel. Many advance directives give family members permission to remove the patient from life support under certain conditions. When people make this type of advance arrangement, they are said to be exercising their right to die.

The right to die was established in a landmark 1976 case decided by the New Jersey Supreme Court in which the parents of Karen Ann Quinlan sought to remove their daughter from a ventilator after she spent a year in a coma. Quinlan had consumed drugs and alcohol at a party, which caused respiratory failure and irreversible brain damage. When it became clear to the Quinlans that their daughter would not recover, they asked the hospital to remove her from a ventilator. When the hospital refused, the Quinlans sued, claiming the medical center’s decision violated their right to privacy. The court sided with the Quinlans and ordered the hospital to remove Karen Ann from life-sustaining equipment. After the patient was removed from the ventilator, she continued to breathe on her own and lived for another nine years. However, the case set a precedent that the rights of the individual had priority over medical professionals’ duty to prolong life, clearing the way for family members to end or decline treatment and allow the death of patients who have no hope of recovery. Even though the courts have ruled in favor of the right to die, attorneys counsel people to write living wills and advance directives carefully and clearly to minimize confusion and conflict in such emotional situations.

Physicians have concluded that patients who have been in a coma or PVS for a year have no possibility of recovery. Patients who are in a minimally conscious state have a slightly better prognosis—a one-in-five chance of recovery. Although the odds are against them, patients have been known to recover from comas and similar conditions. In 2004, twenty-three-year-old Brian Sass suffered severe brain damage in a car accident. He spent a month in a coma. One day, at the end of her visit to his bedside, Sass’s mother bent down to kiss his cheek. In the month since his accident, Sass had been unresponsive, but this time he emerged from his coma and kissed his mother back. “Did he kiss me?” Lorelei Sass asked her husband, Arthur. “Did you see that?” A moment later, Lorelei Sass said, “We both just started bawling our eyes out, because it was his way of saying, ‘I’m in here.’”⁴⁵

Heavy Toll

TBI takes a toll on patients and their families, but it also takes a financial toll on society. According to a CDC study, the costs of caring for TBI patients approach $38 billion a year. The CDC claims, “This study could not account for the intangible costs borne by families and friends of individuals who die prematurely from brain injury. For injured persons and their loved ones, the physical and emotional tolls from permanent disability are profound and impossible to quantify.”⁴⁶

Indeed, Muhammad Ali’s family must constantly administer medications that help slow the deterioration of his cognitive abilities. Mike Webster’s son cared for him during the final few months of his life. The Quarry family bore the responsibility of caring for Jerry and Mike as they descended further into dementia. The Gless family must endure Alec’s mood swings and forgetfulness. Prior to serving in Iraq, Gless owned a business. Since sustaining TBI in the war, Gless has found that he can no longer handle the intellectual demands of his business. Now he works in a warehouse. He has often told his wife that a traumatic brain injury is the most difficult war wound to bear. Shana Gless remarks, “Alec says he would give us a limb to have his head back.”⁴⁷