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Reeve's Progress Brings Hope, Reminders of Tough Realities

Disability* Actor's partial recovery renews dilemma-- focus on a far-off cure, or help typical spinal injury patients make it through the day?

September 23, 2002|BENEDICT CAREY | TIMES STAFF WRITER

He's a real-life hero, a compelling advocate, an inspiration. Yet some say his dramatic story could distract us from the realities of ordinary people living with a disability.

Christopher Reeve's partial recovery from a severe 1995 spinal injury, the subject of a television special and a new book released last week, prompted a range of responses, from glee to caution, among the community of spinal cord injury advocates and patients. It has also helped to reignite debate about how best to treat paralysis and recovery.

"Most people are very excited, but some are skeptical and feel the story is being oversold," said Dr. Wise Young, a neuroscientist at Rutgers University in New Brunswick, N.J., who hosts a popular Internet site for spinal injury patients. Hundreds of e-mails about the Reeve story have been posted on his Web site, Carecure (http://carecure.rutgers.edu/Spinewire/index.html), and his clinic has received a flood of phone calls.

For years, there has been debate among the disabled about how best to spend precious resources: Should more be spent on finding a cure for spinal injury, which most researchers say is still many years away, or on easing the daily hardships of the estimated 200,000 Americans disabled by injuries? Since Reeve's accident, suffered when he was thrown from a horse at an equestrian event, he has focused much of his efforts on advocating for a cure.

Last week's TV special "Christopher Reeve: Courageous Steps"--detailing how the actor, with years of assisted exercise and the help of specialist doctors and nurses, regained some movement and sensation--threatens to overshadow the daily reality for many people, some with spinal injuries said.

"You have to understand that 99.9% of the people with spinal cord injuries have no way to do what he did," said Royce Hamrick, 61, of San Diego, an advocate for the disabled who lost feeling from his chest down after a gunshot injury 15 years ago. "We don't have the resources; we don't have the connections. What Chris has done is wonderful. I just think that for a lot of us, we need help living as we are, dealing with chronic pain, with unemployment. Many people disabled by spinal cord injuries are living below the poverty level."

Wes Combs, a spokesman for Reeve, said the actor is committed both to finding a cure and improving daily care. "He believes the issues of care and cure are not mutually exclusive," Combs said. "Just because he has focused some attention on research for a cure does not mean he doesn't believe the here and now is not a priority.... He can't control how the media handles his story."

Spinal cord injuries often strike people in their prime, between ages 16 and 30, in car accidents or violence, leaving them able-minded but often suddenly unable to remain on their jobs or find new employment. Only about 30% of paraplegics are employed, and many rely on Medicaid and other federal programs to meet basic needs, researchers said.

In a media conference call last week, Reeve acknowledged that his treatment regimen was beyond the means of most patients. "The problem that we still have yet is that insurance companies are very reluctant to pay" for these therapies, he said. Combs said the cost of Reeve's care, including physical therapy and all other expenses, is about $400,000 a year.

The actor suffered what's called a C-2 injury, designating the spinal vertebrae that Reeve damaged; a C-2 injury interferes with breathing and is often fatal. He had no substantial recovery in the five years after the accident, and there was no evidence suggesting he could improve, according to one of Reeve's physicians, Dr. John McDonald, a spinal rehabilitation specialist at Washington University in St. Louis. The physical therapy program, designed by McDonald and which Reeve has participated in since 1999, is considered experimental.

Typically, insurers will pay for one to two months of hospital time, which includes rehabilitation therapy but not experimental treatments. A person's odds for recovery are difficult to predict, but they drop dramatically if there is no return of feeling or movement after the first few months, doctors said. Some people recover sensation and movement of arms and fingers as long as two years after their injury, Rutgers' Young said, but it does not happen often. Recovery is more likely to occur in people whose spinal nerves have been damaged but not ripped apart and entirely severed from the brain.

Because it's often impossible to tell whether patients retain intact nerves, doctors have no reliable way to predict who will recover sensation. Some people may rehab and exercise for years and see no improvement, while others can get some feeling back for no apparent reason, Young said. If, after a month or two, there is no functional improvement--in movement of the hands or legs, for instance--the patient is said to "plateau."

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