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  ALS clusters puzzle medical experts
Posted November 17, 2004 in ALS News

Sunday, November 14, 2004
By KAREN TOLKKINEN
Staff Reporter
Copyright 2004 al.com. All Rights Reserved.

OKALONA -- Paper mills were Rickey Baugh's life. In 30 years, as he tells it, he toiled at pretty much every plant in southwest Alabama, working on machines that roll out paper towels and cardboard boxes, climbing into tanks to tinker with equipment, enduring danger and dirt for relatively good pay.

He was getting out of his car one day in the early 1980s at the MacMillan Bloedel plant in Wilcox County when a machine exploded, spraying an acidic cloud that ate paint off cars parked in its path. Baugh pulled on rubber boots and a rain coat and joined a cleanup crew.

In 2002, he worked at the Georgia-Pacific paper mill in Choctaw County a week after two men accidentally breathed hydrogen sulfide and died during an incident that disabled a dozen others.

It paid for him to be careful, but also not to think too deeply about the things that could happen to a man who was trying to support a family and make house and car payments.

Baugh was careful, he said, but now he wonders if the paper mills got him after all.

At 49, Baugh sits at his round dining room table most of the time, listening to country music on the radio. His guitar sits in a corner of his living room. He expects he'll never be able to play it again. He can barely feel his hands nowadays, not when someone grips them, not when he rubs them over and over. He fumbles with a cigarette lighter and is embarrassed by his awkwardness. His hands, he said, feel cold to him, icy cold, like a dead person's. He has lost 65 pounds.

Earlier this year, Baugh was diagnosed with a fatal, incurable disease called amyotrophic lateral sclerosis, ALS for short, and less formally known as Lou Gehrig's disease, after the famous baseball player who died of it.

He also learned that he wasn't the only one: In five years, two other former workers at the MacMillan Bloedel plant, now owned by Weyerhaeuser, had been diagnosed with the disease.

That three coworkers were diagnosed within five years is statistically unusual. The good thing about ALS is, it's pretty rare. Nationally, there are two cases for every 100,000 people, according to the California-based ALS Association.

At MacMillan Bloedel plant, there were about 2,000 workers at its peak, said Jackie Walburn, Weyerhaeuser's regional spokeswoman. Clarke County itself has a population of not quite 28,000.

Baugh can't help but wonder sometimes if there's some connection with his paper mill work.

Walburn says she believes the company runs a healthy mill and that there's no connection.

"This is out of our area of expertise," she said. "But according to our industrial hygienist experts, the cause of ALS remains unclear. There is no current science which links ALS to the workplace."

That doesn't stop Baugh's former coworkers, Wilbur Newton, almost totally paralyzed by the disease, and Kevin Lyles, who was diagnosed in 2001, from weighing possible connections.

Newton and Lyles were the subjects of four Mobile Register stories when they went to China in October for a controversial surgery involving transplanting cells from aborted fetuses into their brains. Both showed almost immediate signs of improvement and are now back home.

But wondering is all they can do. Even scientists who have devoted their careers to ALS haven't been able to figure out what causes it.

"Anything that's unusual should be looked at a little more carefully," said Dr. Marinos Dalakas, chief of the Neuromuscular Diseases Section of the National Institute of Neurological Disorders and Stroke in the Washington, D.C., area.

Still, he added, examining clusters of ALS cases has not helped researchers thus far to understand much about the perplexing disease.

That three cases would show up in such a small group could just be the roll of the dice, said Alabama state epidemiologist Dr. J.P. Lofgren.

"When you do anything in life, things cluster," he said. Like his daughter throwing a six four times in a row. Like toothpaste preferences.

"Here and there you'd find more people who use Colgate than in other places," he said.

Over the years, ALS clusters have popped up around the country. Years ago, Dalakas heard about a cluster in the Midwest; more recently, one among football players, he said. There has been a theory, never substantiated, he said, that excessive exercise might predispose people to contracting the disease.

Other scientists have speculated that diet or exposure to chemicals or heavy metals might trigger ALS.

In Guam, a Pacific island and U.S. territory, researchers suspect that a tremendously high ALS rate among natives is linked to the practice of eating fox bats, which feed on poisonous seeds of the palm-like cycad tree.

After Gulf War veterans appeared to be dying of ALS in higher rates than the general population, researchers from the Harvard School of Public Health examined death records and determined that indeed they were -- but then, so had all military veterans throughout the 20th century, no matter what branch or when they served. They presented their findings in April at a meeting of the American Academy of Neurology.

At least one state is closely studying its patterns of ALS cases, especially along industrial rivers containing toxic heavy metals. Massachusetts is creating an ALS disease registry to help look for links to environmental, genetic, chemical or other factors.

"I've been doing this for four years now," said Rick Arrowood, chief executive officer of the ALS Association's Massachusetts chapter. "I've seen people walk in who have just been diagnosed and you think, 'Why?' And in a year or so they pass away and you think, 'How did this happen?' And families will say, 'Oh, remember, you worked at the leather tannery, you were exposed to chemicals,' or 'You were obsessed with your yard, you were exposed to pesticides.' ... Hopefully this registry will be able to say well, it's likely it could be caused by X. And finding out what X is, is going to be the challenge."

One scientist who has been trying to understand motor neuron death for more than 20 years applauded such examinations.

"We need bigger numbers, bigger studies," said Lee Martin, a pathologist at the Johns Hopkins University School of Medicine who has discovered that, in mice, transplanted adult stem cells from the olfactory bulb can delay ALS symptoms and death.

"ALS has been linked loosely to well water consumption, high duration physical activity in athletes, some type of environmental toxin and electromagnetic radiation. There have been some very interesting studies. There presumably is a link between electric utility workers and ALS," he said.

Could there be a link to paper mills?

At paper mills, chemicals are used in everything from purifying the pulp to bleaching the fibers and coating the paper. For some reason, Newton's mercury levels were unusually high. Baugh, however, said doctors told him his blood looked as healthy as a 21-year-old man's.

Walburn said the company cares about its workers, and that it has welcomed academic studies of employee health issues. It has cooperated with Johns Hopkins researchers who were examining the health of paper mill workers, she said.

Further studies, Arrowood said, are crucial.

"Is it a coincidence or is there an environmental link? And that's the crux of the question," he said.

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