Christopher Reeve comes to URI Tuesday to talk about stem-cell research and the inspiring progress he's made regaining feeling below his neck.

09/29/2002

BY G. WAYNE MILLER
Journal Staff Writer

Christopher Reeve was passing an evening at his home near New York City two years ago when his wife, Dana Reeve, noticed that his left hand had stirred. He seemed to be gesturing to emphasize a point in their conversation.

"Are you doing that on purpose?" she said.

He was not. Since being thrown violently from a horse in 1995, the star of Superman and other films had been almost completely paralyzed. Below his shoulders, he could not feel any sensation or voluntarily move a muscle.

Christopher Reeve's left hand quieted, as spontaneously as it had started. Startled by what she'd witnessed, Dana Reeve asked her husband to will it into motion.

"Try," she said.

It would hardly be the first time he had made such an attempt. For years, he had sat in his wheelchair or laid in his bed and commanded a toe, a foot, an arm, a hand -- any part of him below his shoulders -- to move. None ever did. The signals from his brain could not effectively pass the damaged top of his spinal cord, the central nervous pathway to the body below.

OK, he thought, let me try that.

As Dana watched, her husband looked at the finger and said: "Go."

Journal photo / Steve Szydlowski MAN WITH A MISSION: Christopher Reeve, last Oct. 26 at Brown University, where he gave the parent's weekend keynote lecture.

The finger moved.

He tried it again.

It moved.

The Reeves were thunderstruck, for medicine had never recorded a case of someone so severely injured regaining function after so many years. And while Christopher Reeve had participated in an aggressive regimen of physical therapy, he had received no experimental treatment -- no new wonder drug, no infusion of stem cells, no similar intervention that had proved a magic bullet.

Dramatic though it was, he thought, the finger movement must have been only an aberration.

"It's a party trick," he told his wife.

It was more than that, as the ensuing months were to demonstrate.

With the help of a neuroscientist at Washington University School of Medicine in St. Louis, Reeve gradually regained a significant degree of function. Today, he can move every finger of his left hand, his right wrist, and both feet. In a pool, where the pull of gravity is lessened, he can "walk" and slowly flap his arms like a crane taking flight. He can feel a light touch over most of his body, and differentiate between a pin prick and a cotton swab, an ability that seems trifling until it is lost. He is encouraged that he will achieve his seven-year ambition of walking again.

Still, the wiggle of a single finger remains monumental. The heavens didn't part that evening, but something near-miraculous occurred.

"That was so startling that I really didn't know what to make of it," Reeve said last week in an interview. "I was so overwhelmed that I had to downplay it in order to control myself and not raise anybody's expectations."

REEVE IS coming to the University of Rhode Island on Tuesday to discuss stem-cell research. His appearance occurs during a whirl of publicity surrounding the actor, who marked his 50th birthday last Wednesday with a black-tie dinner (and $2-million fundraiser for his paralysis research foundation) in New York. His second book, Nothing is Impossible, has just been released. Reeve was the subject of a recent hour-long documentary on ABC, and was featured last week on The Today Show and Larry King Live. On Reeve's birthday, the U.S. Senate and House introduced The Christopher Reeve Paralysis Act of 2002, which seeks to expedite research and provide greater assistance to those like him.

Obstacles to healing will preoccupy Reeve at the URI forum, "Stem Cell Research Ethics and Public Policy," the fourth in an autumn-long series on the Kingston campus.

In his remarks, Reeve will urge politicians to follow California, which passed controversial legislation, signed into law last week, that gives scientists broad freedom in using stem cells. With the potential to cure a multitude of diseases and disorders (and to serve as a sort of fountain of youth for all), stem cells could be instrumental in Reeve's further recovery -- and a godsend to others like him.

Use of the cells is controversial because one type -- the embryonic -- is derived from human eggs, which, if fertilized, could develop into people. The Catholic Church and other religious groups have joined some lawmakers in opposing use of embryonic stem cells. President Bush has permitted limited research, but has forbidden federal funding of the far-reaching experimentation that is needed before stem-cell therapy can become reality.

"I have no problem with people who have a consistent moral point of view, a deeply held and consistent position on the issue," Reeve said. "However, I think that many politicians don't -- they're not coming from a place of absolute morality, but more from political calculation."

Reeve cited Republican Sen. Sam Brownback of Kansas, a strident opponent of stem-cell research, as someone in the latter category.

"Senator Brownback and others on the religious right -- social conservatives, as well -- have said that they believe that an egg, unfertilized, just by itself, is already an individual. Meaning, as an individual, it is entitled to the same rights and protections as you and me. I find that very hard to understand."

Although embryonic stem cells can be produced from fertilized eggs, stem cells also can be grown from unfertilized eggs into which DNA from another individual has been implanted (a process known as somatic cell nuclear transfer, or therapuetic cloning). If Brownback were to be consistent, Reeve said, the unfertilized eggs a woman sheds through menstruation should be mourned. "To take it to an absurd extraction here, in terms of logic, women should be holding funerals for their eggs once a month. And that's, of course, ludicrous."

Brownback has stated his opposition to stem-cell research publicly -- and also in letters written to the actor. "His advice to me," Reeve said, "is to draw nearer to God -- and that God will ease my suffering." Reeve has not written the senator back.

REEVE'S STORY has been told many times-- once by the actor himself, in his first book, the ironically titled Still Me, published in 1998. It is the story of an actor who made his major stage debut at the age of 15, studied drama with Robin Williams at New York's prestigious Julliard School of Performing Arts at 21, and appeared in the first of his four blockbuster Superman movies in 1978, shortly after he turned 26.

Blessed with talent and looks, Reeve became a major player in Hollywood and on Broadway.

His personal life was equally charmed. He married and had children. He made lots of money. He earned a pilot's license and crossed the Atlantic solo.

And he became an accomplished equestrian.

He was competing on May 27, 1995, when his horse suddenly balked. Reeve's hands caught in the reins, and his 6-foot-4-inch, 230-pound body was launched forward. He landed on his head, and the force broke his neck centimeters below his brain stem. Given at best a fifty-fifty chance of surviving the surgery to reattach his head to his spinal column, Reeve left the hospital weeks later, a quadriplegic who required a ventilator to breathe. When he finally came home, at the end of 1995, he needed complete assistance to live.

His body was wasted, but his spirit did justice to the superheroic character that had made him a star.

Over the next several years, Reeve directed one TV movie, starred in a second, played himself in two more, and narrated still others. He wrote his books. But he devoted most of his energy to becoming an advocate for the disabled, trading on his celebrity status to build the Christopher Reeve Paralysis Foundation into a powerful research and lobbying organization.

Asked what has sustained a man whose physical magnificence made him a heartthrob, Reeve said: "Above all, my family: Dana, the children, my parents, Dana's parents, our friends -- that's been the most important factor. I don't know how anyone could face this situation alone. I've had a tremendous support system. Then, I guess I just refuse to accept absolutes."

The foremost "absolute" he rejected was the early declaration by his doctors that he would never regain function below his shoulders, let alone realize his dream of walking again. Although his brain could not move his arms and legs, therapists and machines that electrically stimulate muscles could. By the autumn of 1995, Reeve could breathe briefly on his own and move his head slightly left to right, but years of little further progress followed.

Unbowed, Reeve intensified his program; he wanted his muscles to be ready for the day when his central nervous system was resurrected, and he wanted to be in overall excellent health, in hopes of avoiding the chronic infections and hospitalizations that often afflict the paralyzed (on that count, he succeeded). And, while science may not confirm its existence, he kept faith in the healing power of the mind.

"I have a core belief that is probably helping me, and that is: The body wants to be whole. It is striving all the time to be whole. That means, it is trying to repair itself whenever there is damage of any kind. And there is a great deal that we can do, with our own inner resources, to help it. That has a great deal to do with the relationship of the mind to the body."

ABOUT A YEAR before the day he moved his index finger, Reeve met neurologist Dr. John W. McDonald, medical director of the Spinal Cord Injury Program at the Washington University School of Medicine. McDonald, now 39, had long admired Reeve from afar. Reeve's advocacy, in fact, had been a prime factor in McDonald's switching his specialty from strokes to spinal-cord injuries.

After that first meeting, McDonald began a series of studies and introduced Reeve to a more rigorous exercise program. For the first few months, Reeve did not improve.

McDonald had not seen Reeve for a while, when the actor returned to St. Louis in late 2000.

The doctor asked the actor how he was doing.

"There's something that you might find interesting," Reeve said.

McDonald asked what it was.

Reeve bent his index finger.

"I was stunned," McDonald said last week in an interview. "This was impossible."

Said Reeve: "The first order of business was to, A, videotape it, and, B, put me in the MRI to see about the command to move the finger -- to find out where it was coming from in the brain. And it turned out to be the correct part. And that was the real surprise. We went on from there."

McDonald carefully chronicled Reeve's continued improvement throughout 2001 and this year, publishing his findings in this month's issue of Journal of Neurosurgery: Spine. What McDonald does not do is explain Reeve's recovery -- although he speculates, cautiously, that strenuous physical activity may have played a role. Did exercise somehow stimulate the growth of new neurons in Reeve's spine? Did exercise reactivate cells that survived the accident? Or was it some unknown mechanism, perhaps linked to Reeve's gutsy determination, that was responsible?

McDonald and other scientists who have reviewed Reeve's case will only say that they are inspired to further study. And they suggest -- again, cautiously -- that others might benefit from an intensive program like Reeve's. For his part, Reeve is urging insurance companies to pay for exercise therapy for other paralyzed people who lack his financial resources.

His injury was still fresh when Reeve vowed to walk again; he said it would happen by the age of 50. It didn't, of course. The actor has set no new date -- but he intends to keep his vow.

"It's going to require a combination of physical preparation on my part . . . and pushing politics and economics aside so that science can succeed.

"I often compare it to the building of the Transcontinental Railroad in the 1860s. I see the patients and their helpers are in Omaha, headed west, and the scientists are in Sacramento -- which is actually not far off, because California is where there are a number of biotech companies. They head east, and we meet in the middle, in Utah."

It is possible that Reeve will need nothing but more time on his current program to reach his goal. "His recovery has been steady and progressive, and the expectation is, he would extend that line," said McDonald. "How far, no one knows."

The likelihood, however, is that exercise alone will not get Reeve on his feet again. Even if it could, years might be saved by innovative new treatments.

STEM -CELL THERAPY is not the only possibility for people with spinal-cord injuries: pharmaceuticals, genetic engineering, and cell grafts from the olfactory gland are among the other advances that show promise. But with their proven ability to grow into a range of other cells, including neurons, stem cells remain high on many scientists' lists.

Reeve is no scientist, but he believes that he can influence the politics.

"I see the California legislation as an opportunity for other states to follow suit," said Reeve. "And that would have a tremendous impact on the future for millions of people who are currently suffering.

"I think back on the last four years, and how little the [federal] government has done, and it's really pretty painful to contemplate."

Christopher Reeve speaks Tuesday at 5 p.m. in Room 271 of the University of Rhode Island's Chafee Social Science Center. Joining him for a panel discussion of "Stem Cell Research Ethics and Public Policy" will be Dr. Peter Smith, professor emeritus of pediatrics at Brown Medical School, and the Rev. David Ames, Episcopal chaplain at Brown University and assistant clinical professor of comunity health at Brown Medical School. The discussion, which is free and open to the public (although seating is limited), is the fourth session in an autumn-long colloquium, "Genetic Technology & Public Policy in the new Millennium," sponsored by URI and The Providence Journal.

More information on Reeve and his foundation can be obtained from Reeve's Information on Reeve's new book, Nothing is Impossible: Reflections on a New Life, and his earlier book, Still Me, along with excerpts, can be found at http://www.randomhouse.com/author/results.pperl?authorid=25162

An introduction to stem cells written by the National Institutes of Health can be found at: http://www.nih.gov/news/stemcell/primer.htm