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Published Saturday, May 5, 2007
Church hit hard by Lou Gehrig’s disease
Six members of First Presbyterian have been diagnosed


By Sarah Bruyn Jones
Staff Writer

ALS WALK

When: 9 a.m. today
Where: University of Alabama Quad
Visit: www.alsalabama.org



NORTHPORT | “On Saturday, I’m going to walk for you, Carrie, bad knee and all," said the Rev. Charlie Durham, as he got up to leave Carrie Rogers’ hospital room.

Rogers has amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. Earlier this week she was at Northport Medical Center to be fed. That’s when Durham stopped by for a visit.

For Durham, pastor at First Presbyterian Church in Tuscaloosa, ALS has become all too familiar. Six members of his congregation have been diagnosed with the debilitating disease; four have already died.

The first death came in May 2002. Another followed six months later. Nearly a year to the day after the second death, another longtime First Presbyterian member died from ALS. The most recent death was in July 2005.

“This is the worst disease I have ever seen in my life," Durham said. “It has robbed me of some of my special friends."

Durham’s descriptions of those who have died are haunting. He’s watched as the first symptoms appear -- Rodgers, a math teacher, would drop the chalk during class -- and progress to the point when they can barely speak. He has witnessed the bodies of professionals at the top of their careers wither away.

ALS is a progressive, fatal neuromuscular disease that attacks nerve cells and eventually results in total paralysis. There is no known cause or cure, and even diagnosing the disease is daunting.

“I was diagnosed by process of elimination," Rogers said. Her diagnosis came three and a half years ago.

Speaking is not easy for Rogers. She pronounces each word slowly, sounding out syllables so those listening can decipher what she is saying. (Durham said his skills at lip-reading help.) Eating is difficult, and she uses a power wheelchair. While her body is failing, her mind is strong.

Worldwide about two in 100,000 people will suffer from ALS each year, and at any given time four to five people out of 100,000 will have ALS. So the fact that ALS has attacked the bodies of six people at First Presbyterian where membership is around 1.400 is unusual.

For Dr. Eugene Marsh, a neurologist and dean of the University of Alabama’s College of Community Health Sciences, it is a mystery he’s been talking about for years. Marsh is also an active member at First Presbyterian.

“I was seeing more people than I felt like I should both in the community and especially at our church," Marsh said. “It wasn’t scientific, just observational."

He mentioned it to a colleague at UA, Dr. John Higginbotham, who specializes in epidemiology, the study of disease incidence and affects on communities.

Higginbotham enlisted a group of graduate students to examine the rate of ALS in West Alabama during a decade.

“If there was something there [at First Presbyterian], the thought was we would have a higher rate of ALS in Tuscaloosa than the rest of the country," Higginbotham said.

By the end of the fall 2005 semester, the students had produced a report indicating that while there appeared to be a cluster of ALS patients at First Presbyterian, neither Tuscaloosa County nor West Alabama had a higher than normal incidence rate of ALS.

The other counties they included in the study were Walker, Marengo, Pickens, Hale, Sumter, Perry and Greene.

In fact, the report indicated that the incidence rate of ALS in West Alabama is well below the worldwide rate. By interviewing four area neurologists, including Marsh, the students tallied 29 different cases of ALS within 10 years.

“That’s significantly less than what you would expect," said Ryan Martin, one of the students who conducted the study. “But we were limited in what we had to work with for counting the occurrences."

The students concluded that a more thorough investigation of ALS in West Alabama would require data from all the neurologists who treat ALS patients in the area.

Martin said there is a strong possibility that they missed some cases because they had trouble interviewing all who are believed to treat ALS in the area.

The students also explored whether any other commonalities among the six ALS cases at First Presbyterian existed. But besides attending the same church, nothing was discovered.

“Everyone just kept saying it was the nicest people in the church who were affected," Martin said.

John Upchurch, whose wife, Katherine, has ALS, said a federal registry to record ALS cases is needed. Upchurch started a local ALS support group, and he and his wife are members at First Presbyterian.

There has been some effort on Capitol Hill to pass legislation that would establish an ALS registry.

Establishing a registry could lead to more research funding, Upchurch said, and it could also help establish links that might unveil what causes the disease. Environmental factors and genetics are believed to be factors.

Marsh said while he respects the research done by the students, further investigation might be needed to determine why there is a cluster of ALS at First Presbyterian.

While some medical clusters are simply coincidence, others often point to environmental causes or other clues about the disease.

“We have to try to come up with the next best way to look into this," Marsh said. “I don’t want to make it sound like we don’t trust what has been done. We do. But in science sometimes you just have to look at things in many different ways to try and come up with answers."

In the meantime, Durham turns to the things he knows: visiting those affected, praying with them, and walking at the Alabama ALS Association’s Walk to D’Feet ALS event.

As Durham stood in the parking lot of Northport Medical Center after visiting with Rogers, he reflected on the biblical story of Job, who had everything taken from him but still remained faithful to God.

“Like Job, these are the faithful," he said of Rogers and the others at First Presbyterian with ALS.

Reach Sarah Bruyn Jones at sarah.jones@tuscaloosanews.com or 205-722-0209.

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