Ride For Life: Alabama seeks answers to ALS numbers

The Mobile Bay area appears to have a higher-than-normal number of cases of Lou Gehrig's disease, a situation that deserves further study, according to the state toxicologist and a local support group.

Neil Sass of the Alabama Department of Public Health said he wants to interview patients in Mobile and Baldwin counties to determine whether they share characteristics that might have led to the disease. State officials also might conduct environmental tests to determine possible links, he said.

"There appears to be a number in excess of what we would expect in that population," Sass said. "I think there's something going on in south Alabama and I'm not going to say it's just Baldwin County. We as a department are going to start looking into it."

Lou Gehrig's, formally called amyotrophic lateral sclerosis or ALS is fatal and as yet incurable, causing its victims to slowly become paralyzed. Nobody has pinpointed a cause, despite decades of study, even in some of the most celebrated cases of Lou Gehrig's clusters.

In this country, an area with a population of about 100,000 generally sees two new cases of ALS a year and at any one time has seven cases altogether, said Mary Lyon, vice president of patient services for the ALS Association.

A local support group for ALS patients has counted 30 existing cases in the past year in an area from Satsuma to Point Clear, said Kelly Ivy, chairman of the Southland Gulf Neuromuscular Association. The population of that area is about 61,000, according to the U.S. Census. It does not include Mobile or Prichard.

Mobile and Baldwin counties together have a population of about 540,000. Statistically, it normally would have about 38 cases.

Ivy's areawide ALS count is based on those who approached the association for grants or medical equipment and those who attended the support group meetings, he said.

"We were shocked at the number of patients that were showing up and we were aware of," he said.

Ivy said he knows of other ALS cases in the area that he did not count because they didn't contact the association for help. The number does include one person who died three months ago. He said he is not sure whether any of the others have died.

ALS patients are expected to live two to five years after diagnosis. Most of the patients are originally from the area, said Ellen Gentle, a Fairhope resident involved with the association.

Ivy said his group's numbers are just the beginning. Epidemiologists will use scientific methods to determine actual counts, he said.

ALS patients and their families often voice perplexity at how a normal, healthy adult could contract such a terrible disease.

"He was never sick a day in his life," said Donna Eiland of Spanish Fort, whose husband, William 55, has ALS. "I mean, where does this come from? Where does this come from?"

Bert Woodard of Satsuma, who has lived with the disease for an unusually long time, at least 22 years, said a Florida neurologist told him several years ago that his autopsies on ALS victims revealed high levels of heavy metals and an absence of a calcium-bearing hormone in each of them.

His own levels of mercury were tremendously high when tested, he said. Why? He's not sure. He worked in a paper mill for a year after graduation before working offshore. Eiland's husband also once worked in a paper mill and, in Clarke County, three men with ALS worked most of their adult lives in paper mills. One of those men also had an unusually high level of mercury.

But paper mill work is common in south Alabama, so it's difficult to know whether there's a connection. Lyon cautioned against drawing conclusions before scientific research has concluded.

Woodard used to eat a lot of bream and flounder he pulled from a canal near the Mobile River. And, of course, he grew up in an area dotted with chemical plants along U.S. 43.

Three people who graduated a year ahead of him from Satsuma High School have also been diagnosed with the disease, he said. At least one has died. He heard, too, that a teacher there died of ALS.

"That's very rare," he said.

Researchers have eyed heavy metals as a possible cause of ALS, as well as trace elements, solvents, chemicals and radiation.

In England, a group of ALS patients reported heavy exposure to lead at three times the level of a control group, according to a report by the Agency for Toxic Substances and Disease Registry. Those patients had an unusually slow form of the disease. Another study found that in Texas, frequent exposure to lead and mercury seemed to produce an elevated risk of developing ALS.

Other studies, however, have failed to find any link between the disease and exposure to these things, the report said.

"We don't have anything at this point that we can point to with confidence that we can say, 'This is it,'" Lyon said.

Still, she recommends that all suspected clusters be examined by doctors and scientists if they contain at least twice the expected number of cases.

Investigating ALS will not be simple, Sass said.

"If it were something environmental, why wouldn't we have more cases?" he asked. "What else is involved besides just exposure to something? All this is a black hole we need to fill."

Finding a particular chemical or heavy metal would help researchers determine how it triggers ALS, said Jim Williams, who coordinates charitable giving for the Muscular Dystrophy Association.

"It's not looking to lay blame to anyone or anything or any chemical," said Williams, who has attended meetings in Fairhope on the topic.

Gentle, who hosted one of the meetings with her husband, Fairhope Councilman Bob Gentle, said the group is undaunted by the inability of others to find a cause of the disease.

"It just takes a small group of committed people for a worthwhile cause," she said. "If we can find the cause we can find the cure."

Added Williams: "I'd be delighted if one day down the road they'll say the cure came from research that started in Mobile, Alabama."