Monday, Feb. 23, 1987

Probing A Mysterious "Cluster"

By Claudia Wallis

During his five years as a backup quarterback for the San Francisco 49ers, Bob Waters, now 48, suffered more than his share of bruises and broken bones. Thus when he began to experience some shakiness in his right arm more than four years ago, he simply chalked it up to an old playing injury that had been repaired with a metal plate. "My doctors and I decided that, well, maybe it has something to do with the metal," says Waters, who coaches at Western Carolina University. But gradually, as the muscle spasms spread and both arms weakened, Waters became alarmed. In February 1985 doctors confirmed his worst fear: he was suffering from amyotrophic lateral sclerosis, a progressive weakening of the muscles due to nerve degeneration.

Commonly known as Lou Gehrig's disease, after the brilliant New York Yankee first baseman whose career and life it cut short, ALS is generally fatal. Among its better-known victims: Actor David Niven and former New York Senator Jacob Javits. Though the cause remains elusive, doctors suspect that genetic susceptibility sometimes plays a role: 5% to 10% of ALS patients have a family history of the disorder. Some researchers consider it to be an autoimmune disease, in which the victim's immune system assaults his own body tissue.

In Waters' case, however, this seemingly random stroke of misfortune soon began to look like a clue to a medical mystery. Shortly after his diagnosis, Waters learned that his former teammate Matt Hazeltine, a linebacker, had also been stricken with ALS. Last December Waters heard of a third ALS casualty from the 1964 squad -- Fullback Gary Lewis. Both Hazeltine and Lewis died earlier this winter. Waters was stunned. Was it mere coincidence? The disease typically strikes 1 in 50,000 Americans a year, yet it hit three teammates on a 55-man squad. Waters' doctor, Stanley Appel, head of neurology at Houston's Baylor College of Medicine, was suspicious too. "Statisticians would tell you that there is still a possibility it's due to chance," he says. "But no matter how you figure it, 3 out of 55 is way out of proportion."

The trio of cases does not represent the first instance in which ALS has been found in tantalizing clusters. In Ohio three teachers who taught in the same high school classroom developed the disease. So did six people living on the same hillside behind the Berkeley campus of the University of California. The most widely studied clusters are located in the western Pacific, particularly on the island of Guam, where ALS was once at least 50 times as common as in the continental U.S. Last year Peter Spencer, a neurotoxicologist at New York City's Albert Einstein College of Medicine, offered a solution to the mystery of the Guamanian cases when he traced them to a toxin found in cycad seeds, which the natives used to eat in times of famine. The toxin specifically affects nerve cells, says Spencer, and "exposure may occur decades before the actual onset of the disease."

While Spencer's discovery cannot directly explain the cases of the San Francisco 49ers or the Ohio schoolteachers, it does lend credence to the notion that something toxic in diet or environment can later trigger ALS. Indeed, over the years, a befuddling array of culprits has been suggested. They include infection with poliovirus, exposure to heavy metals, employment in the plastics industry and a history of traumatic injuries.

Now, in the case of the 49ers, a new suspect has emerged: a fertilizer used on the team's practice field. Pasco Balzarini, a retired maintenance worker, remembers using a product called Milorganite on the field from 1947 until the mid-'50s (though he does not believe he used it in Waters' era, and neither the 49ers nor the local parks department can confirm it was ever used). Milorganite, made by the Milwaukee metropolitan sewerage district, is a heat- dried residue of sewage sludge and is used on lawns nationwide. Prior to 1978, it had a high content of cadmium, a heavy metal.

Last week the Milwaukee Sentinel reported that since 1961, two of 155 deaths among people who had worked in the plant where Milorganite is produced resulted from ALS. The Sentinel has also turned up 25 ALS patients in Wisconsin who say they have been exposed to the fertilizer. Neurologist Benjamin Brooks, who directs an ALS research clinic at the University of Wisconsin in Madison, considers these numbers "unusual" and feels any possible tie to heavy metals should be investigated. But he stresses that as yet "there is no established link between Milorganite and ALS." Late last week the sewerage district announced that medical experts would investigate the alleged connection between heavy metals, Milorganite and ALS.

Whether or not Milorganite is to blame, Bob Waters is convinced that the 49ers' cluster is not a coincidence. He has launched a personal crusade to find the cause. Over the past two months, with help from Dr. Appel, Waters has written and mailed questionnaires to 114 former 49ers inquiring about their physical condition, medications they have taken over the years and any unusual environmental exposures they had while on the team. Waters himself remembers taking anabolic steroids, to add muscle bulk, and other drugs.

Waters has been frustrated in his quest by what he perceives to be the 49ers management's lack of cooperation in providing addresses and his own medical records. "They have been reluctant to help and unfeeling of the situation," he charges. He is particularly bitter because, he says, he received the addresses too late to get the questionnaires to Hazeltine and Lewis, who might have provided some valuable clues before they died. As his physical condition deteriorates -- he has dropped 20 lbs. and has lost the use of both arms -- his search becomes more urgent. "If we can trace back to what caused this 22 years ago, maybe we can find a cure," he says. "If we can't find a cure for me, I hope I can last long enough to make it possible for someone else to be helped."

With reporting by Andrea Dorfman/New York