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Bad luck or bad dirt?
Environmental activist stricken with mysterious disease

By CHARIS ANDERSON
Standard-Times staff writer
May 25, 2008 6:00 AM
NEW BEDFORD — Brian Woolley is sick.

His legs hurt all the time; he gets muscle cramps all over his body; his speech slurs if he talks too long. About four weeks ago, he was forced to start using a cane.

"Just walking with a cane now is killing me because back in December, I was doing really good and now it's just going downhill it seems very, very fast," said Mr. Woolley, a 51-year-old New Bedford resident.

Mr. Woolley's doctors think he may have ALS, a progressive neurodegenerative disease.

In the U.S., about 5,000 people are diagnosed each year with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, and about 20,000 people have the disease at any given time, according to statistics from the National Institute of Neurological Disorders and Stroke.

The disease, which affects nerve cells in the brain and the spinal cord, has an average survival rate of three to five years.

Mr. Woolley, who lives on Summit Street with his wife, has lived near the site of a former city burn dump for more than 30 years.

New Bedford High School was built on the site, which is contaminated with polychlorinated biphenyls (PCBs) and other toxic substances. In 2000, the city discovered contamination across Hathaway Boulevard at McCoy Field, on which the new, $70 million Keith Middle School was later built.

"I live next to which we now know is a toxic dump site," Mr. Woolley said. "That was just a field back then ... I've been playing in that all my early years and early teen years."

Coincidence? Or could Mr. Woolley's exposure to PCBs and other contaminants such as selenium, magnesium and lead have caused the symptoms he is now experiencing?

That is exactly what the Day Neuromuscular Laboratory at Massachusetts General Hospital is trying to find out.

"Basically there's no known cause of ALS," said Nicole Couture, a clinical research assistant at the lab. "We're looking at both genetic and environmental factors that might be causing it."

The lab is enrolling participants for an ALS gene study that is trying to pinpoint what triggers the disease.

"ALS runs in the family, meaning more than one person (in a family) has the disease about 10 percent of the time," Ms. Couture said.

But, she said, "In Brian's case, he has no family history. He's the only one."

In addition to doing research, the lab also offers treatment. Mr. Woolley is a patient at the lab's clinic, according to Ms. Couture.

When Mr. Woolley realized the lab was studying environmental risk factors, "that really flipped me out," he said.

As part of the study, he had to complete a detailed questionnaire about his exposure to different contaminants. As he went through the survey, contaminants that were found in his neighborhood cropped up again and again.

"I went down the list to see which ones that they're looking at is in McCoy Field," he said of the contaminated site. "All these are in here."

If anyone would know what contaminants were at McCoy Field, Mr. Woolley would: He formed a community environmental group called Wasted Away when he heard the city was planning to build a school on the contaminated site and took on the role of neighborhood watchdog. His activism started years before his recent illness.

Many of his initial concerns have been addressed, he said, and Keith Middle School is "one of the cleanest contaminated sites in the city."

"I'm glad about that, but I'm not glad about the situation I'm in now," said Mr. Woolley. "The doctors can't tell me if six months from now I'll be using a wheelchair, you know?"

"When I got this," Mr. Woolley said, tapping the brochure from the ALS gene study at the Day Neuromuscular Lab, "and when I saw environment, I was like, 'Oh my God.'"



In Middleboro, a cluster of ALS cases has been found around two waste disposal sites. A preliminary study conducted by the state Department of Public Heath found a 72.7 percent greater risk of ALS incidence in Middleboro compared to the national rate.

There is no evidence of an ALS cluster in New Bedford.

The ALS study isn't the only study in which Mr. Woolley will participate. Starting June 4, the state's Department of Public Health will be conducting interviews with some members of the New Bedford community to assess the risk of exposure to PCBs.

People who have worked at New Bedford High School or Keith Middle School, or people who live in the neighborhood of the schools, will be eligible to participate, according to Suzanne Condon, director of the state's Bureau of Environmental Health.

Current and former students at the schools may also participate, but they are likely to have a much lower risk of exposure than people who have lived or worked in the neighborhood for years, according to the Department of Public Health.

"We want people to know what level of risk we think they may or may not have," Ms. Condon said. "We'll be involved, I think, for some time to come in trying to do the continued outreach."

After the initial interviews are completed, the 100 individuals who have the greatest risk of exposure will be offered the opportunity to have their blood tested for PCB levels.

The state Department of Public Health will also be analyzing the pattern of cancer occurrences in the neighborhoods surrounding New Bedford High and Keith Middle School.

The outcome of that analysis is likely to be of interest to Mr. Woolley, who was diagnosed with Hodgkin's Lymphoma in 1976.

The age-adjusted incidence rate of Hodgkin's is 2.8 per 100,000 people, according to the National Cancer Institute, while the incidence rate of ALS is 1 to 2 per 100,000 people, according to the Day Neuromuscular Lab.

"Having both those diagnoses is very rare," Ms. Couture said.

When Mr. Woolley was diagnosed with Hodgkin's, he remembers sitting down with a team of doctors who asked him questions ranging from what foods he ate to if he painted or used lacquers, Mr. Woolley said.

"But they never asked me, like, 'Where did you play?'" he said, referring to the contaminated dump he played in growing up. "And now it feels like one big circle."

To cure his cancer, Mr. Woolley underwent a combination of radiation and chemotherapy that left him with permanent damage to his aorta, he said. He suffered a heart attack about eight years ago that was caused by the aortic damage, he said.

Doctors are also looking at radiation damage from those long-ago cancer treatments as a possible cause of the symptoms he's experiencing now, according to Mr. Woolley.

Diagnosing ALS is mostly a "rule-out" procedure, according to the Muscular Dystrophy Association Web site. All other possibilities must be ruled out before ALS is diagnosed.

"I'd just like an answer, 'Yes, you have this,'" he said. "I'm a fighter. I'm not going to sit down and say, 'Oh that's it.'"

Living with his symptoms has been really hard, Mr. Woolley said. He has had to cut back on his work as a truck driver, limiting himself to two or three days a week. And his body is failing him on even simple tasks: He struggles to hold a pen in his hand now.

Mr. Woolley has an older brother who has no health problems. If Mr. Woolley's symptoms were caused by his exposure to the contaminants, he's not sure why he is sick and his brother isn't.

He's always bitten his fingernails, Mr Wooley said; perhaps he ingested the contaminants that way, he hypothesized.

"My mother believes I got it all from (the contaminated site)," he said. "In a way, it don't matter. Let's just address the issue."

Contact Charis Anderson at canderson@s-t.com.
http://www.southcoasttoday.com/apps/...NEWS/805250316