Reeve’s Progress Brings Hope, Reminders of Tough Realities
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 (https://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.”
“This is the point at which we have to make a decision about how much more a patient is going to recover, and how much time and effort that’s going to take,” said Claire Beekman, manager of spinal cord physical therapy at Rancho Los Amigos Medical Center in Downey, one of the country’s leading rehab centers.
“At some point we need to prepare people for what their life is going to be like, and try to set things up so they can work to recover on their own.”
Reeve pays for his own treatment, he said, which includes 24-hour nursing care; a special exercise bicycle he uses regularly to stimulate leg muscles and nerves; and visits to several of the top spinal rehabilitation doctors in the country. By all accounts, the actor has worked like an Olympian, never relenting even two years after his injury, when recovery of sensation or movement is extremely rare. The stimulation and exercise regimen is based on the observation, in animal and human studies, that even a broken spinal cord can somehow learn or remember patterned motions, such as walking.
Although the brain gives the command to begin walking, the spinal cord coordinates the motion, said Dr. V. Reggie Edgerton, a professor of physiological science and neurobiology at UCLA, who has demonstrated the phenomenon in animals. Repeating the motion artificially somehow jump-starts the spine’s ability to execute the motion, apparently without the help of the brain. “I don’t think anyone would pretend to know exactly how this happens,” he said. “
Some with spine injuries wonder about the implications of exercise treatment. Some people “think the news [about Reeve] means that patients just need to quit being lazy and do the same therapies he’s involved in. I don’t have the money or manpower,” wrote one subscriber to Young’s Internet site.
“Is the therapy worth paying for? Is it effective for everyone?” asked Edgerton. “These are good questions. But they are only being raised as a result of knowing that this is possible, by seeing what Mr. Reeve has done. That in itself is very significant.”
