iN THE HILL COUNTRY NORTH OF SAN Antonio, where the Texas flats give way to rocky bluffs of mesquite scrub, juniper, and live oak, Marco and Pauline Waterreus found their dream house. It was a roomy, wood-beamed ranch with horse sheds in back–the ideal place to put down roots with their four freckle-faced boys and growing menagerie of goats, horses, dogs, cats, hamsters, bunnies, and fish. Now that they were settled, Marco was preparing to leave his civilian job at Kelly Air Force Base and expand his own business as an architectural landscaper. He and Pauline were in love, and life was good. That was in January 1996.
A year later, their dream was history.
One day in November while tinkering with his lawn mower, Marco had trouble loosening a bolt with his left hand. Two months later, he started to limp. Pauline, a nurse, made an appointment with a neurologist.
Three weeks of MRIs, EMGs, and blood tests followed. But Marco felt fine and itched to get back to his routine. Nothing prepared him for the news to come. In February–on the day before Valentine’s Day–the doctor was brief and clinical as he gave the diagnosis: Marco had amyotrophic lateral sclerosis, or ALS.
Like most people, Marco and Pauline knew nothing about the disease. “What do we do next?” Marco asked. Before backing awkwardly out of the room, the neurologist ran through a quick explanation of the disease, saying there was no known cause or cure and suggesting that they read up on it.
Pauline remembers every detail of that night. She cooked dinner (pork chops), and then she and Marco took to the Internet to research ALS. Before long, they came to an awful realization: What they’d received that day wasn’t a diagnosis. It was a death sentence.
ALS is a rare, devastating condition, often referred to as Lou Gehrig’s disease, after the Yankee slugger who died of it at age 37 in 1941. ALS attacks nerve cells in the brain and spinal cord that control muscle movement; as these nerves, called motor neurons, shut down and die, victims lose more and more of their ability to move. The paralysis spreads through the arms, legs, face, and throat, eventually causing loss of speech and the ability to swallow. All the while, the patient’s mind is unaffected, so he literally becomes trapped in his own body. Death comes when the chest muscles can no longer force air in and out of the respiratory tract or when food becomes trapped in the lungs, causing aspiration pneumonia–usually two to five years after the disease is diagnosed.
“I remember speaking to my sister on the phone the next day,” Marco recalls, “looking tearfully at the beautiful red roses I had bought for my wife for Valentine’s Day.” Because he can no longer speak or move, he communicates with the aid of a robotic computer voice that’s controlled by an infrared light in his eyeglasses: “At thirty-six, I realized that I was going to die, leaving behind a wife and four young boys. My world was turned upside down.”
MORE THAN COINCIDENCE?
A month after getting the diagnosis, Marco and Pauline stumbled on some information that would bring a perplexing new twist to their struggle. The couple attended a support group run by the South Texas Chapter of the ALS Association (ALSA) in San Antonio. There, Marco met Kim Johnson, then 45, also an ALS patient, and discovered that he, too, had worked at Kelly Air Force Base, the huge 85-year-old complex that had provided military maintenance and support from World War I through the Gulf War. What’s more, Kim had been stationed in the same building where Marco was a financial officer–Building 171.
Two men from Kelly with ALS might have been a coincidence. But Marco and Kim weren’t the only ones. In the fall of 2000, the number of known cases from the base had climbed to 16. That’s when a nagging question began to spread through the community: Could there be a link between the air force base and ALS? As the word got out, Kelly workers with ALS seemed to turn up everywhere. By December of last year, there were 39 cases; this spring, that number skyrocketed to 83. As this story went to press, the South Texas Chapter of ALSA was in the process of verifying 15 more potential victims. Now medical experts around the country are concerned, saying this is an extremely high incidence of a rare disease that typically affects two out of 100,000 people in the United States each year. Even more baffling, while ALS commonly strikes people in their 50s or 60s, many Kelly patients were in their 30s and 40s when they were diagnosed.
The victims and their families aren’t sure who or what is to blame, but many believe strongly that the Air Force owes them an explanation. “I’m angry. I feel like my daughter’s life was robbed,” says Aida Etien, whose daughter, Barbara Crawford, 55, has been given only months to live. “I don’t know if it was the water. But something happened at Kelly because so many of them got this disease.”
A BIG-TIME POLLUTER
For decades, South Texans had considered Kelly Air Force Base a good neighbor. The base employed some 25,000 people, many of them civilians, providing high-paying jobs to a financially depressed community. But in recent years, San Antonians have been shocked to discover that Kelly was also a big-time polluter, unleashing toxic solvents, jet fuels, paints, and other hazardous chemicals into the ground and air. The civilian workers who spent time on the base witnessed a variety of horrors: open drain-valves that poured thousands of gallons of black solvents into the gravel; the removal of asbestos from Building 171 while people worked at their desks, shielded only by loose plastic sheeting; rats and wild cats running through the rafters; radioactive waste signs on the base’s golf course. “Actually, I think a lot of things were probably contaminated at Kelly,” says Kim Johnson’s wife, Val, who, like her husband, worked as a contracting officer at Kelly.
ALS isn’t the only health crisis linked to the old Kelly airfield. In recent years, high rates of liver cancer, kidney cancer, leukemia, and birth defects have been reported among people living in neighboring zip codes. No fewer than 18,000 households sit above a slow-moving plume of Kelly-contaminated groundwater. The 12-mile-square cauldron of poisonous chemicals was discovered in 1988 when the city was digging a sewer trench about a mile from Kelly. Workers were overcome by noxious fumes from a pool of degreasing agents and paint-removing solvents oozing eastward from the base.
This month, Kelly is closing down–not because of the pollution, but because of nationwide military cutbacks. And as the Air Force evacuates, San Antonio community leaders are in the process of converting the 100-plus buildings on the base into a business park. At the same time, in response to pleas from families, politicians, and the ALS Association, the Air Force has launched a $5 million epidemiological study, scheduled for completion this fall. The main question: Can what is going on at Kelly be defined as a “cluster”–that is, did the 83 known ALS victims get sick because they were exposed to a common trigger? Perhaps the most famous cluster was Love Canal, in Niagara County, New York–where high rates of cancer were traced to a toxic dumping ground during the late 1970s, and the whole community was shut down.
But proving a true cluster is tricky. “You always have to consider whether you have a statistical fluke,” explains Stanley Appel, M.D., director of the Muscular Dystrophy Association/ALS Center at Baylor College of Medicine, in Houston. It took the military 25 years to finally make payments to veterans suffering from illnesses linked to Agent Orange, a defoliant used during the Vietnam War. And debate is still swirling around Gulf War Syndrome, a series of illnesses thought to be caused by an experimental anti-nerve gas drug used in the Persian Gulf conflict in 1991.
THE AIR FORCE PLEADS NOT GUILTY
At Kelly, the San Antonio Metropolitan Health District, the Texas Department of Health, and the South Texas Chapter of ALSA are all working with a team of Air Force scientists spearheaded by Lt. Col. Kenneth Cox, M.D. “There are many questions to be answered before any sort of cause-and-effect connection can be made between ALS and Kelly AFB,” Lt. Col. Cox insisted recently.
In December, when the count of Kelly ALS patients stood at 39, Lt. Col. Cox said the situation would only be significant if the total reached 43 or more. Now that the number has nearly doubled, he still downplays the gravity of the situation. “We have more cases, but a different time frame,” he says, meaning that over half the cases date back more than 20 years (and at least one of the known Kelly workers with ALS came to the base as early as 1938). Spreading the number of cases over six decades reduces their overall impact.
Still, 32 of the 83 identified ALS sufferers worked at Kelly from 1980 on, which provides a sizable, contained group for researchers to study. There is also the matter of Building 171, where at least 17 of the 83 victims worked. “That is a huge building that housed about 2,500 people with many different work histories,” Lt. Col. Cox maintains. “We don’t know that it has any bearing.” In fact, he says, “If they gave me a nice corner office with windows, I’d be glad to work in Building 171.”
Many people in the San Antonio community believe the military may not be able–or willing–to see the obvious. Oil its editorial page, the local Express-News flatly accused the Air Force of “statistical double-talk” when confronting the growing number of ALS cases. Indeed, Texas Congressman Ciro D. Rodriguez and other community leaders have expressed skepticism that the Air Force can investigate itself objectively. As a result, the Air Force has invited ALSA to bring in three independent scientists to review its work. In addition, Rep. Rodriguez has convinced the Agency for Toxic Substances Disease Registry (an arm of the Centers for Disease Control and Prevention, in Atlanta) to conduct an independent study, which should be completed by the end of the summer.
The Greater Kelly Development Authority, a nonprofit organization overseeing leasing of the space to new tenants, also commissioned its own study of potential hazards in Building 171, partly in response to concerns from employees at Lockheed-Martin, which has moved into the structure. Its findings: Building 171 is “cleaner” than the average home or office–though the study’s authors have recommended that the building be retested periodically.
THE SEARCH FOR CLUES TO ALS
ALS has been baffling researchers for more than a century. Robert G. Feldman, M.D., a neurology professor at Boston University, spent almost two decades studying a troubling group of ALS cases in Middleborough, Massachusetts. Over the last 30 years the disease has killed some 24 people who lived within a six-block radius in the relatively small town of 22,000. But after years of research and theories about two plants dumping toxic chemicals into the groundwater nearby, Dr. Feldman was unable to determine if the 24 cases of ALS had a common cause. And it remains to be seen whether the Veterans Administration, now investigating a higher rate of ALS among Gulf War veterans, will be able to find a single trigger.
Even if scientists trace a common thread to Kelly, one major question will still need to be answered: What activates the disease? Not everyone exposed to contaminants at Kelly came down with ALS. “It’s what we call the `two-hits’ theory,” Baylor University’s Dr. Appel explains. “Some people must have a susceptibility to the disease. If you’re exposed to a possible trigger–whether it’s a toxin, a virus, or a trauma–and you don’t have the susceptibility, then you aren’t going to get it. You need both hits in order to get ALS.”
“IT’S TOO LATE FOR DAD”
Marco Waterreus may never learn why he developed ALS. He does realize, however, that his time is running out. His muscle function will never come back, and his lung capacity is dropping dangerously low. “The boys know their dad’s going to die,” Pauline says. “We were riding along the other day, and they were talking about when Dad gets sicker. One of them said, `Well even if there’s a cure, it’s too late for Dad.’ It’s on their minds.
“I have fleeting moments of being upset about how things turned out,” Pauline adds. “It can seem unfair. But we just try to be a family and value every day together.”
As his wife speaks, Marco struggles to compose a message on his computer. Eventually he nods to the simple statement he has written: “My hope is that my experience can save even one person. Because this disease doesn’t just affect that person. It affects everybody in that person’s life.”
Beating the odds.
ELIZABETH LEBLANC loves to draw wild tigers–elaborate sketches that show a talent beyond her 11 years. The maturity in her brown eyes also belies her age. Elizabeth and her sisters, Katherine, 14, and Christine, 16, have had to grow up quickly during their mother’s long bout with ALS. “Sometimes I ask God, `Why did you have to pick my mom?'” Elizabeth says. “When I see other moms playing with their kids, I wish we could too. But then I’m just happy that she’s alive.”
In 1989, Mary Rose LeBlanc was three months pregnant with Elizabeth when she started tripping over air and experiencing bone-tired exhaustion. A few months after her daughter was born, Mary Rose learned she had ALS. She was just 35. “The doctors said her chances were very poor,” her husband, Robert, recalls.
At the time, Mary Rose was on medical leave from her lob at Kelly, where she and Robert worked as electronics engineers. Determined to beat the odds, she consulted a nutritionist who recommended a strict holistic diet, high doses of vitamin C, and a daily regimen of lemon-water to flush out her liver. (Doctors don’t advise anyone to try this unproven therapy.) “Within two weeks, Rose’s energy came back,” Robert says. “We went from looking at grave sites to talking about her going back to work.” In fact, Mary Rose did return to work–at Lackland Air Force Base–for ten more years.
Although Mary Rose is in a wheelchair, the progression of her disease has been blessedly slow. Robert, who now works at Lackland, serves as a Girl Scout leader, attends PTA meetings, and transports the girls to cello and violin lessons. “The kids give us a reason for going on.” he says. “It’s heartbreaking to think of them being without a mom.” In a nearby chair, Mary Rose looks as if she’d like to touch her husband’s arm, but she can’t. Instead she simply smiles. “We try to set an example and never give up,” she says.
ITS STARTED ON KIM JOHNSON’S annual ski trip to Lake Tahoe in February 1995, when he fell on the slopes and had trouble getting up. Back home, he saw his doctor, who thought he might have a pinched nerve. Then, two months later, he couldn’t cut the fingernails on his right hand. In July, a neurologist gave Kim and his wife, Val, the worst possible news. “I think you have ALS,” he said. “And there’s not much you can do for it.”
“We left the office in shock,” Val remembers. “We walked to our car and just stood there and hugged each other.” Together, Kim and Val had led a fastpaced, fun-filled life, even when their daughter Tracie, now 28, was small. They golfed, played softball, traveled, and socialized with a wide circle of friends.
Slowly, all those pleasures have been lost. Still, Kim and Val are coping with ALS far better than most. It’s been six years since his diagnosis and Kim, now 49, has outlived the two- to five-year span he was told he had. He’s one of the lucky ones: The couple’s exhaustive research has led them to the best treatments available, and between insurance coverage and their own savings, they’ve managed to buy whatever equipment they need to make Kim as comfortable as possible, including a motorized Swedish-made wheelchair and an air-circulating mattress, which prevents bed sores.
Still, there is one aspect of the disease that equipment can’t help. “The worst is not being able to express myself.” Kim writes on his computer, which he operates with the frail strength remaining in his right hand. “I try to adapt. My philosophy is not to dwell on things I can no longer do and to enjoy what I still can. I try not to have down days. But I do have down moments.”
Learning how to die.
TONY CORTINAS was the kind of man who could do it all. He held down two jobs for nearly 30 years–as a sanitary engineer for the City of San Antonio (eventually being promoted to supervisor) and as a member of the Texas Air National Guard, at Kelly Air Force Base. Four nights out of seven, he played softball. At home, he was an attentive dad to his daughters, Laura and Alma. He and his wife, Alicia, talked of retirement, dreaming of long, lazy fishing trips at their retreat on the Texas Gulf Coast.
Now, instead of trolling for trout in the Gulf, Alicia spends her days caring for Tony. Since being diagnosed with ALS in 1997, he has lost the use of his arms and hands and, at 54, is showing signs of advanced ALS: respiratory problems, frequent choking, nearly unintelligible speech. “I cried for a year and a half,” Alicia says. “I’d go into the closet because I didn’t want him to see me. Now we laugh. What else are we going to do?” Like dozens of other ALS patients who once worked at Kelly. Tony believes his illness may be related to his former job. He was a heavy equipment operator at a city landfill, where the base sent barrels of cast-off chemicals to be buried. Sometimes the barrels would explode and the chemicals would eat the paint off machinery. “There were no guidelines as long as the government was paying,” he says. “We used to joke: `Be careful you don’t retire too late.’ Because it seemed everyone was dying when it came time for retirement.”
The love of his family has helped. Sixteen-year-old Laura is especially close to her father; she wears a pin made from the Lou Gehrig postage stamp issued in 1989, in memory of the Yankee great who died of the disease. “My friends understand,” she says. “They always ask how my dad–and mom–are doing.”
For Alma, age 31, who is raising her own family a block away, her father’s illness has deepened their relationship. “The other day, my dad asked me, `Did I teach you everything you need to know?'” she says, her voice cracking. “I told him, `Yes, Daddy, but I didn’t think that would include teaching me how to die.'”
Helping those with ALS.
When ALS patients in San Antonio come to neurologist Carlayne Jackson, M.D., for a second opinion, she tries to give them hope. “My biggest hurdle is that they are first told they have two to five years to live,” says Dr. Jackson, director of the South Texas ALS Clinic at Reedes Rehabilitation Center at University Hospital in San Antonio. She shows them that there are things they can do to make their lives easier or even buy valuable time.
Physical and occupational therapy can help a person adjust when he starts to lose motor skills. As the disease progresses, a small, portable device–called the Bi-Pap–helps the patient breathe; a feeding tube keeps him nourished when he can no longer swallow; and equipment such as a Hoyer lift helps family members move the patient from wheelchair to bed.
Unfortunately, there is still only one FDA-approved drug, Rilutek, which can help slow the disease. But creatine, the amino acid supplement made famous by home-run king Mark McGwire, and stem cell proteins show promise. Both seem to improve the health of motor neurons in lab mice.
“Research right now is quite exciting, but we have to make sure we do all the right tests carefully,” cautions Lucie Bruijn, Ph.D., science director and vice president for the ALS Association. “But while we’re moving fast in scientific terms, patients are desperate and want results today.”
?Tragedy times free.
BARBARA CRAWFORD is bedridden. But her long days on a tilted hospital bed in her mother’s den are far from quiet. Her faithful cockatiel, Petie, carries on at full throttle, especially when a visitor leans in too close to his mistress. “He is very protective,” Barbara says.
Just nine months after being told she has ALS, Barbara, 55, is declining quickly. She is disarmingly open about it: She has written her obituary, planned her memorial service, and pledged her body to the University of Texas Health Science Center for research.
For Barbara, a widow, the ALS diagnosis is just one in a string of military-related tragedies. Barbara and her twin sister, Carol, were born in the Kelly hospital–their father, an air force lieutenant, was killed on a secret training mission in 1945, before they were born. In 1983, Clyde, her husband of 17 years, was stricken with fast-moving small-cell cancer. He was a Vietnam veteran and a civilian worker at Lackland Air Force Base (also in San Antonio). Barbara nursed him until he died a year later at age 56. Then she took a job at Kelly, where she worked in the medical clinic for two years. While she never had direct contact with chemicals used at the base, she often encountered workers with contaminated clothes that would make her skin itch.
Ironically, in January–nearly 20 years after her husband’s death–Barbara was notified that his cancer had been linked to Agent Orange, a defoliant used in Vietnam. She is now eligible for substantial compensation from the U.S. military. Yet, for Barbara, the money is a case of too little, too late. It can’t buy back what she longs for now–her husband, her independence, and her life. “It’s very frustrating to need someone to feed you or scratch your nose,” she says. But she hopes that the gains made with Agent Orange will allow scientists to move more quickly with their studies of possible links between ALS and Kelly. “I want them to find out what is causing this, take responsibility, and clean it up,” she says. “And I hope that by studying us, researchers will be able to create a drug cocktail that could make ALS a chronic rather than terminal condition.”