Ride For Life: After stem cell surgery in China: "I feel better"

BEIJING, China -- Waiting for his wife to exchange dollars for Chinese yuan at a bank here, Kevin Lyles lifted his ball cap and tilted his head forward, revealing a shaved scalp and two small bandages.

It had only been four days since a Beijing doctor drilled two holes in his skull in order to transplant fetal cells into the frontal lobe of his brain in hopes of halting and even reversing a disease that is slowly killing him; amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.

The disease, which generally kills its victims in two to five years, attacks motor neurons, interfering with the brain's ability to tell its body what to do. It eventually leads to almost total paralysis.

In Lyles' case, it had robbed him of speech, hindered his ability to breathe deeply and to chew, and made his hands somewhat clumsy.

In just four days, Lyles was not only back in his hotel room and walking around, he appeared to be racking up small victories.

That morning, for the first time in recent memory, he was able to squeeze nail clippers properly with his left thumb instead of awkwardly gripping them in his palm, his wife said.

He could count to 10 clearly. He walked up five flights of stairs. He was able to tell his 3-year-old daughter, over the telephone, "I love you."

His speech was still mostly unclear to those who don't know him well, but his wife, Nikol Lyles, a nurse, said she is now able to understand him and that he hadn't had to write her notes since the surgery. Before the procedure, note-writing was how he communicated.

"I feel better," he wrote to a reporter. "The improvement in my talking is not as fast as I would like but my tongue is improving and I really believe it is answered prayer."

But physicians and researchers in the West warn that simply believing in a cure itself can do much to alleviate symptoms -- at least temporarily.

For example, in the 1970s, Lou Gehrig's disease patients flocked to Florida for injections of snake venom, treatments that seemed to spark some improvements but which were later debunked in two federal studies. If anything, it illustrated the power of human hope and human belief.

Also on a mission of hope with the Lyles family in Beijing are another Clarke County couple, Wilbur and Edith Newton, who live just south of Grove Hill. Like Kevin Lyles of Thomasville, they came for controversial, experimental treatment offered in Beijing by Dr. Hongyun Huang, who conducted research at Rutgers University in the United States before returning home. Similar procedures are occurring in at least two other countries, but Huang's method is unique in that he uses fetal cells from the olfactory bulbs of fetuses aborted in the second trimester. In theory, the cells cause motor neurons to regenerate, though Huang says he is not sure why some patients have improved so quickly.

Fetal cell research and transplants in the U.S. are legal but are hampered somewhat by religious and political opposition. In China, where abortions often are performed to comply with the country's one-child-per-family policy, it's not an issue. Both Clarke County families, Southern Baptists, say they oppose abortion, but reason that since they happen anyway, something good may as well result.

U.S. doctors have faulted Huang for operating on patients before demonstrating through scientific methods that it works. Huang contends the U.S. medical community is falling behind on an exciting field of research and treatment. He plans to collaborate with Harvard University, which has expressed an interest in following the progress of his American patients. He said he also plans to conduct the procedure on mice to demonstrate its effectiveness.

The ALS patients in Beijing, whose time is running out, say word-of-mouth reports of success are good enough for them. And they blame the U.S. medical community for not moving more quickly to offer the procedure back home.

In Beijing on Monday, Wilbur Newton was hoping things here might happen a little more quickly. He was still waiting for surgery.

An advanced ALS patient, Newton uses a wheelchair and can only raise his eyebrows for "Yes," shake his head a little for "No," raise his feet while sitting and smile.

Smiling has been a little tougher this week.

Waiting has been tough for him, his wife and his sister. They left Mobile on Oct. 1, endured more than 24 hours of travel and have spent most of their time in a Beijing hotel, eating hospital-delivered food, visiting with other patients and watching Chinese television. Doctors have not wanted Wilbur to venture out into the city's polluted air prior to surgery, so except for two trips to the hospital for tests and two outings one day last week, he has stayed inside. They had hoped for surgery last week.

Wilbur said he has been getting anxious. The uncertainty has been getting to him.

"I think we all did pretty good until the last couple days," said his sister, Lynn Gates, who accompanied them here.

"I just wish they'd give us a straight answer," Edith Newton said.

On Monday, Huang said the clinic had gone for a while unable to obtain cells and was waiting for the supply they had to finish a two-week culturing period in the laboratory. Newton's surgery might not happen until late in the week, he said.

So, while patients who have undergone the surgery have seen their speech improve daily, the Newtons still communicate by guessing letters of the alphabet. On the outing to the bank, after exchanging her money, Edith saw that her husband needed something.

"Is it the first half of the alphabet?" she asked. It wasn't. "Q, R, S? It's S? You want to sit up?"

He had slumped in his wheelchair. Though he can't control his muscles, he can still feel them, and he gets tired of sitting. When his wife and sister figured out that he wanted to stand, they pulled him out of his chair to an upright position, his arms and hands dangling in front of him. Cruelly, ALS has bestowed on him the body of a rag doll, while preserving his mind, his senses and his memory.

Other patients have gained strength in their legs and ventured out among Beijing's many bicycles, honking horns and narrow, winding alleys. Wilbur, though, waits, isolated from this ancient civilization, wrapped in his own battle, his motor neurons dying daily.

"Just trying to make the best of a bad situation," his sister said.