Christopher Reeve’s Quest
Christopher Reeve’s will and determination should be an inspiration to disabled people and cryonicists alike. For the disabled, it’s the improvments in his spinal cord injury since his accident that have confounded medical experts, for cryonicists, it’s the knowledge that medical professsionals are a long way from fully knowing the true damage done by freezing and warm ischemia.
It has been eight years since Christopher Reeve broke his neck at an equestrian competition in Culpepper, Virginia. After his horse stopped suddenly before an obstacle, Reeve flipped forward and suffered what doctor’s call a "hangmans injury." Death by hanging often results from suffocation. After the accident Reeve was heard to say "I can’t breathe."
Reeve’s injury left him paralyzed from the shoulders down. He was unable to breathe on his own. Doctors immediately placed him on a ventilator. He was informed that his injury was permanent, and that he would no longer feel sensation in ninety percent of his body. Reeve stated "I was told from the start that it was hopeless, that it was impossible for me to regain movement below the shoulders."
He said that "every scientist should remove the word ‘impossible’ from his lexicon." Not only does Reeve want to cure himself, he is determined to transform medical research which he feels is constrained by excessive caution. "Research should not be reckless, but it should be fearless. If you don’t add courage to the equation, the scientific aspect will go to waste."
Up to now, Reeve’s progress has been remarkable. He’s able to use the biceps of his right arm against resistance. When in a swimming pool, he’s able to push himself off with his legs.
"One day I expect to get up from this wheelchair." This claim, which he’s often made in speeches has not been well received by certain scientists and advocates for the disabled. Some critics claim he’s in a state of denial, others have called him a spoiled celebrity who raises false hopes.
Charles Krauthammer, a prominent columnist, who’s also wheelchair bound and has a medical degree, wrote an angry appraisal of Reeve after the actor appeared in a TV commercial touting advances in spinal cord research.
Reeve is aware that his intention to recover has been dismissed, even denigrated. Yet he is not as naive as some of his doubters think. Reeve has a dogged intelligence, and in the past eight years he has developed a nuanced understanding of the biology of spinal-cord injury, he has learned how the scientific establishment sets priorities and conducts its research; and he has deciphered the ways that different branches of the government permit or bar innovative medical treatments.
Reeve knows that his fame gives him unique access to the media, to politicians, and to fund-raising dollars. By exploiting these resources, he has set out to change the way things are done in the clinic, the laboratory, and the government. He believes that only by causing a revolution in all three realms does he have a chance.
It is perhaps easy to view Reeve's quest as one driven by hubris; it is far from certain that he will walk again. However, the steady, incremental progress he has made is extraordinary and, to many scientists, confounding. Indeed, ,the results have been so encouraging that mainstream researchers are reconsidering the dogma that long-term paralysis is irreversible-and paralyzed patients around the world are beginning to follow Reeve's lead.
He considered suicide, but his wife Dana helped change his mind. "Chris had to make his own decision," she said. "I was very clear that I was in it for the long haul. I said, "you’re still you, and I love you. Let's give it two years, and if in that time life is too agonizing let's reevaluate."'
Nearly everything that Reeve read asserted that patients like him could not improve. He eventually discovered, how ever, that a few physicians and neuroscientists had taken a contrarian position. One was V. R. Edgerton, a neuroscientist at U.C.L.A. Edgerton had theorized in the early eighties that the spinal cord could function independently of the brain. This was at odds with the prevailing view that the spinal cord was merely a cable connecting brain and body.
"When scientists think they know how something works, it becomes difficult to get new ideas accepted," Edgerton told me. Virtually no decent scientist would study spinal-cord injury. "The dominant view was: it's a hopeless situation," he said. "Spinal-cord-injury research was considered 'the graveyard of neurobiology."
Edgerton began experimenting with cats whose spinal cords had been cut with a scalpel midway down their backs. The injured cats were placed in a harness and put on a treadmill. The idea was to make the cats mimic normal walking, to see if inducing such repetitive activity could reawaken circuits that Edgerton believed had been shut down by the injury. The experiment was a success: after using the treadmill for three to six months, most of the cats could walk again.
Werriig's experiment was inspired by the observation that when newborn babies are held upright, their toes touching the ground, they spontaneously move their feet in a stepping motion. To him, this suggested that there was an innate 'program 'within the human spinal cord for walking; perhaps this program could be retrieved, like an intact file on a damaged hard drive.
In November, at a conference in New Orleans, Reeve met with John McDonald, an ambitious spinal-cord researcher at Washington University in St. Louis. McDonald agreed to supervise his therapy, and that winter, for the first time since his accident, Reeve entered a swimming pool.
Around this time, Reeve found that he could wiggle the toes on his left foot. 'The sequence didn't make any sense," he said. 'So I thought, why shouldn’t I try everything?" In 2001, Reeve discovered that he could move his right leg slightly when lying on his back- His left leg revived next. Finally, Reeve's arms started to respond; he still can't lift them while sitting up, but his exercises in the pool are making them stronger. His workouts are now so rigorous, , that he often feels muscle burn afterward.
McDonald's association with Reeve has allowed him to create a flourishing rehabilitation institute in St. Louis. Forty patients are now undergoing treatment. McDonald recently started a pediatric program. "I credit Chris with leading me down this path, he has said.
In 2001, McDonald began studying groups of paralyzed patients. He discovered that patients who used the electrical- stimulation bike had fewer pressure sores, blood clots, and infections. "The best way to avoid skin breakdown is put two inches of muscle on your buttocks," McDonald said. "The best way to build bone density is to put radial forces on bone. The bike is the best way to do that."
Critics note that Reeve has financial resources that far exceed those of ordinary families. When asked how he pays for the team of eighteen people, from nurses to physical therapists, who regularly assist him. (His annual medical expenses exceed five hundred thou- sand dollars a year; his insurance covers two-thirds of that.)
Before the accident, Reeve explained, he was a member of three unions, and his disability benefits were unusually large, totaling some four million dollars. He also receives free equipment from manufacturers who hope to draw attention to their products; one company gave him an electrical- stimulation bike, which cost a hundred thousand dollars, for home use.
Reeve is unapologetic about mobilizing his resources to sustain his life and spur his recovery. He points out that he has worked tirelessly to encourage bold scientific research. To help ordinary families, he argues, exotic experiments need to become everyday procedures. And Reeve believes that too many researchers lack a sense of urgency.
As Reeve became acquainted with the scientific community, he grew frustrated by the widespread careerism. "Professors with tenure submit a grant application to get a little bit of money to try to have a little bit more success, which would then get them another grant and then another few years to achieve another little bit of success, but not to launch a major presumptive strike to get rid of the whole problem," he said.
Later, he added, 'I want things to happen quickly. I certainly want to benefit within my lifetime. I don’t want to get out of this wheelchair at the age of seventy-five. I am fifty-one, and am now very healthy, and would like to be out of the chair very soon. I'm not willing to resign myself to being an advocate for research that will benefit people only after I'm gone. I'm not that noble." He laughed, but it wasn’t a joke.Even more controversial, Reeve believes that researchers need to stop being so timid about giving experimental therapies to humans. In the United States a new therapy is typically tested on animals for years before it is tested on humans, and even then it is administered to a slowly growing group.
Most scientists think that this approach protects patients, but Reeve believes that it often harms more than it helps---by slowing science to a crawl.
In our conversation, he described how, in a commencement address at an Ivy League medical school, he had told the students the story of Hans Keirstead, a professor at Irvine. Keirstead, who was working with human embryonic stem cells, had designed a treatment protocol that shortened the three stages of a traditional clinical trial to two stages. 'I said to the audience, 'This is how these young guys are thinking. This is a young scientist who really wants to make a difference. What he did was truly commendable,'" Reeve recalled
Afterward, he went on, This tenured professor said to me, "That is very disturbing. It's very upsetting, because thats rushing things, and if one mistake is made it could set the whole field back ten years."
Reeve replied, "It might be upsetting to you, because it's not the way you are used to thinking. But it’s not upsetting to me as a patient. Because, let's face it, nothing of any significance has ever been achieved without reasonable risk."
"Early results have been promising, however, and nobody appears to have been harmed. In October, Wise Young, the researcher at Rutgers, traveled to Beijing to examine Huang's patients. "I saw this with my own eyes," he told me. No one should view Huang’s protocol as miraculous, Young said, "but it is bringing back sensation and some motor function." All the patients in Huang's study had chronic injuries, he said; on average, they had been paralyzed for two years. "One very puzzling thing is that many of the patients are recovering function within three to five days, which is too fast for regeneration," Young added. "There may be some other mechanism of recovery that we don’t understand.'
Reeeve is even more excited by the work of Dr. Hongyun Huang, a Chinese neurosurgeon. Huang, making a leap that Reeve applauds and others condemn, has injected olfactory glial cells into the spinal cords of nearly four hundred paralyzed patients, including three Americans. Huang obtained the glial cells from aborted human fetuses. (Such fetal-tissue research is banned in some U.S. states, and the Bush Administration supports a federal ban.)
The speed with which Huang has moved to clinical trials has stunned many in the West. Some scientists, such as Ram6n-Cueto, think it is important to do more research first; she is determined to do primate trials of her method before proposing human studies. Given that scientists do not yet fully understand why glial-cell implantation works in rats, the F.D.A. would also, likely have been wary of green lighting Huang's study.
Since news of Huangs success leaked out on Internet discussion groups, thousands of desperate patients have contacted him. Huang has set up a program that allows Americans and other non-Chinese to visit Beijing for one month, for surgery and preliminary rehabilitation. The cost is twenty thousand dollars; six thousand people, Huang says, are now on a waiting list for the program.
Young, who has created a Web site, Sciwire.com, to dispel rumors overstating the promise of new methods, tells patients who ask about Huang's trial to wait for more data. "But there is no way
you can talk these people out of doing it," he said. "You can tell them wait another year until the paper has come out and maybe he’ll come to the states and they say, Hey, I don’t want to wait three or four years to try this."'
When asked what part of his rehabilitation he treasured most, he replied " The warmth of human skin was the sensation he valued most. Feeling my children’s touch again—that’s been the most amazing thing. Adapted from The New Yorker