Wednesday, September 18, 2002
Reeve's progress limited, expensive, experts caution
By Peggy O'Farrell, pofarrell@enquirer.com
The Cincinnati Enquirer
For a few seconds in a new documentary that airs tonight, Superman star Christopher Reeve is almost walking a feat doctors said would be impossible after an accident that left him paralyzed from the neck down seven years ago.
The actor-turned-advocate stands supported by aides in a swimming pool and manages to move the muscles in his legs enough that his aides can place his feet flat on the floor. He's regained modest movement in his elbows, wrists, fingers, hips and knees; and has regained nerve sensation throughout his body.

Reeve
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Mr. Reeve said his recovery, though limited, proves that people with spinal cord injuries can regain some of the ability lost to their injuries.
But Tristate experts are cautiously optimistic. They agree that Mr. Reeve's recovery is remarkable, but worry he will give false hope to other patients with severe spinal cord injuries. About 11,000 Americans a year suffer traumatic spinal cord injuries. More than half of those injured are age 16 to 30. Vehicle accidents are the leading cause.
The press has been buzzing about Mr. Reeve's recovery for days, but tonight is when the world will see the man who played Superman in four movies back on his feet again. Mr. Reeve, whose spinal cord was crushed just a centimeter or two below his brain stem after he was thrown from a horse, will demonstrate how far he's come since that 1995 injury. ABC airs the documentary Christopher Reeve: Courageous Steps at 10 p.m. Mr. Reeve's 22-year-old son, Matthew, directed the program.
An outspoken advocate of embryonic stem cell research and therapeutic cloning, Mr. Reeve said he and others with spinal cord injuries and neurological diseases need access to controversial experimental therapies that could help them grow new nerve cells.
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SPINAL CORD INJURIES
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Among cutting-edge spinal cord researchMore than 190,000 Americans live with paralysis caused by spinal cord injury, according to the Centers for Disease Control and Prevention and the National Spinal Cord Injury Statistical Center. Other data:
Most Americans with spinal cord injury (SCI) are young adults: 55 percent occur in the 16 to 30 age group. The average age at injury is 32.1 years.
Most patients are male: 81.6 percent of the patients in the National Spinal Cord Injury Statistical Center database are male; 88.7 percent of patients live in private, noninstitutional residences after their injury. Only 4.8 percent are discharged to nursing homes. The rest are discharged to hospitals, group homes or other destinations.
The cost of health care and living expenses varies greatly for people with spinal cord injuries. On average, a person with impaired motor function pays $168,627 the first year and $11,817 for each subsequent year, while a quadriplegic with an injury above the collarbone pays $582,178 the first year and more than $100,000 for each subsequent year.
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Our next step is to proceed and to make sure that scientists are funded to do the best research, cutting edge research, whether or not it involves stem cells or antibodies or growth factor, not only for me, but for everyone else with diseases of the brain and central nervous system, as well as people who suffer from Alzheimer's, Parkinson's, diabetes and stroke, he said. It's within reach. We just have to resolve to unite the government, the researchers and the private sector to work together to get the job done.
Strength to move
After his injury, Mr. Reeve was told he'd never regain any movement or sensation below his shoulders. He's battled most of the problems quadriplegics face: Clogged breathing tubes, respiratory infections, bedsores, frozen joints, atrophied muscles, osteoporosis and fractures.
He's also spent seven years undergoing intensive physical therapy and using electrical stimulation in an effort to retrain his nerves and muscles to move at his command.
Mr. Reeve once told Larry King that his muscles, prone to involuntary spasms, were like an army eager for battle, but lacking a general's guidance.
The general still hasn't made it to the front, Mr. Reeve joked in a teleconference Monday, but if there isn't a general, there's at least a major. There's definitely somebody more in charge. ... and because of all the exercise I've done, I actually do have the strength to move.
Mr. Reeve believes doctors and insurance companies should concentrate more on such approaches, what he calls proactive therapies aimed at helping patients regain as much function as possible, while continuing traditional therapies to help patients learn to manage their disabilities.
There's just tremendous potential for harnessing the body's desire to heal itself, he said. That is a new way of thinking, so now we're looking for a paradigm shift within rehabilitation centers that they look at patients in a new way and also the insurance individual and also the VA system and Medicaid and Medicare. We want this to be a win-win situation to save money and also give people the best possible treatment.
Super resources
Mr. Reeve's supportive care alone he's assisted by nurses 24 hours a day costs $400,000 a year. He uses a special bicycle developed, in part, at Wright State University in Dayton to stimulate muscle and nerve pathways. He exercises in a pool, a zero-gravity environment that allows him to move without fighting his own body weight.
Much of the therapeutic equipment he uses is provided by the manufacturers in exchange for product endorsements, he said. His foundation, the Christopher Reeve Paralysis Foundation, pays for none of his care, he said. The foundation funds research on new therapies and potential cures for paralysis. It's online at www.paralysis.org.
Most patients don't have those resources, experts and some people with disabilities point out. Many who suffer injuries as severe as Mr. Reeve's won't even survive as long as he has because of pneumonia and other accompanying ailments.
Many also point out that unlike most spinal cord injury patients he's been able to work on what progress he has made nonstop at home since his injuries.
Most patients would have been dead within a year or two after their injury because they couldn't afford to continue at-home care, points out Jeff Vernooy, director of disability services at Wright State University and a quadriplegic after a bout with polio.
Mr. Vernooy says he admires Mr. Reeve's dedication to advancing research, but he'd like to see him use his celebrity status to advocate for increased funding for more mundane lifestyle services, such as adaptive equipment and home care to keep the severely disabled out of nursing homes.
But, Mr. Vernooy adds, everyone has their own right to deal with their disability as they see fit.
Dr. Austin Nobunaga, a physical medicine and rehabilitation specialist at the University of Cincinnati and the Drake Center, calls Mr. Reeve's recovery remarkable, but worries that new spinal cord injury patients will see his recovery and not understand how much work has gone into it.
It's got the new guys with spinal cord injuries saying, "I'm gonna wait and not work and see what happens,' he said.
Christopher Reeve has done a lot of work. There's been a lot of effort on his part and those around him, and it's not something that happens magically, and people don't see that. That's what some of the patients I work with are upset about.
Sarah Berger, who uses a wheelchair after a horseback riding accident in 2000, said Mr. Reeve's progress provides spinal-cord injury patients with a much-needed commodity: hope.
That's what you use to get through every day, said the 23-year-old Hyde Park woman who underwent rehabilitation at Drake. She doesn't consider Mr. Reeve's steps in the pool walking, she said, but it's a start. I find that people in wheelchairs can be a bit negative about things. He's doing us all a service in everything he does every day.
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