If it weren’t for the wheelchairs, it would look like a lecture for medical students.
Neurologist Wise Young stood at the blackboard, drawing an occasional sketch to help explain inhibitors, receptors, the growth of motor neurons and axons, cell transplants–everything he finds exciting about the science of spinal cord injuries.
There was rapt attention among the 40 gathered in a small conference room adjoining Young’s laboratory at Rutgers University in New Brunswick, N.J.
As Young talked, those who could write were scribbling notes and preparing questions, which kept the session running for more than two hours.
Young told the spinal cord patients and family members that science was progressing fast and soon they could be faced with dozens of experimental therapies–much like patients with AIDS and cancer are today.
“You’ve got to understand your condition so you can make these decisions,” he told them.
Young, 49, who went from New York University to Rutgers in 1997 to head a group devoted to spinal cord injuries, started holding monthly meetings for patients last August after realizing that he was spending too many hours every day on the phone with patients, attempting to explain their conditions, and advising them on various therapies, many of which they heard about on the Internet.
“People are hungry for information,” he said.
Now he has made it a mission not only to educate patients, but also to rally them to unite as a community and lobby for more research money.
At a recent meeting, Young summarized the latest news from the scientific front. At a neuroscience conference held in November, he said, “there were three or four papers that changed the way I looked at spinal cord injury. . . . And I’ve been studying this for 20 years.”
Some of these new findings gave clues to possible drugs that might prevent paralysis or even restore some feeling or motion to long-paralyzed limbs. Others opened the possibility of transplanting special types of brain cells to replace damaged nerves.
Young’s account of the new research came as encouraging news to patients at his Rutgers meeting, many of whom have been paralyzed for years.
“The information was uplifting,” said John Fig, 42, of Parlin, N.J. Fig said that in the 11 years since his accident, he had become jaded by reports of promised cures for paralysis.
He has been paralyzed in the legs and parts of the upper body ever since a boating trip during which he dove into shallow water and hit the bottom. “At first, I tried to read everything,” he said. “After about five years, I wasn’t so gung ho.”
Fig, a computer programmer-analyst who runs a home-health-care firm, met Young last year at a fund-raising event for the Central Jersey Spinal Cord Association, where Young was speaking and Fig was asked to make the introduction.
Some of the other patients at the Rutgers meeting were paralyzed from the neck down and used respirators to breathe. Others could walk. Many had been adventurers and athletes who got hurt riding motorcycles or bicycles, diving, riding horses or surfing.
Morgan Edwards, 40, a firefighter from Long Island, has been a paraplegic since August. He was doing some construction work, he said, helping with a drainage ditch, when the ground caved in under him and he fell 65 feet.
Christine Markow, 23, a graduate student at Princeton University, was told she would never walk again after a sledding accident in Vermont. Determined to prove that grim prognosis wrong, Markow pushed herself with three-hour sessions of rehabilitative exercise. Surprising her doctors, she slowly regained the use of her legs down to the ankles. She now walks with a cane, but even that, she said, could be temporary.
Fig said his injury didn’t follow predictions, either. “They gave me a list of things I couldn’t do,” he said. The doctors told him he could use his wrists, but not his arms. He found the reverse to be true.
Young said he had seen many people defy prediction. He’s convinced that the spinal cord does heal a little, even in so-called complete injuries–the ones thought irreparable. Actor Christopher Reeve, almost completely paralyzed in 1995 when he fell off a horse, has regained the ability to shrug his shoulders and now has feeling in his upper body.
“He can feel his son holding his hand,” said Young, who treated Reeve after his accident and witnessed this slow progress.
Every year, about 10,000 people in the United States become paralyzed from a spinal cord injury.
Federal agencies spent about $70 million last year on spinal cord research, a small amount, said Young, compared with the $8 billion spent on care for the patients.
