Posted on 03/01/2005 6:25:43 AM PST by sweet_diane
Why is a small area of South Alabama home to such a high number of cases of a rare disease?
In part one of our investigative report, we talked to two families who have never met, but have been affected by the deadly disease called ALS also called Lou Gehrig's disease, which attacks the muscles.
The peaceful waters along the eastern shore are calm and tranquil.
But could Mobile Bay, and the air and soil around it somehow be factors in the unusually high number of ALS cases?
Susan Calhoun: " Here he is, he's worked all his life. He's in the prime of his career and it just stopped. It stopped on a dime."
John Calhoun of Spanish Fort died from ALS in December.
His wife says it came out of nowhere and strongly believes the environment along the bay played a key role.
Calhoun: "I fully believe that there is a gene. I think it's connected genetically in some form or way and I feel like the environment triggers that gene."
Bert Woodard of Satsuma has been living with ALS for 21 years now and may be one of the longest living survivors.
Doctors told him an ATV accident triggered the first onset of ALS symptoms.
But what puzzled doctors is when he went through testing, his body had a very high level of mercury…much higher than normal, acceptable levels.
Where it came from remains a mystery.
Bert Woodard's Mother Lura Woodard: " He doesn't know, he doesn't have any proof but we think that has a lot to do with it, the paper mill chemical companies, mercury and water maybe...we just don't know."
We took Susan Calhoun and Bert Woodard's theories to Kelly Ivy.
He's not a doctor or scientist but chairman of the Southland Gulf Neuromuscular Association in Montgomery.
Ivy's daughter has the disease.
Chairman of Southland Gulf Neurological Association Kelly Ivy: "We show a total of 35 cases in a corridor band from Weeks Bay to Saraland. 35 cases in a population of approximately 61 to 63-thousand."
For the past year, Ivy has been tracking those cases to see if there are similarities or connections.
There are 8 ALS cases in Spanish Fort, 11 in Daphne and Fairhope, 2 cases in Bay Minette, one along the causeway, and 8 cases stretching from Point Clear to Bon Secour.
This does not include the 5 confirmed ALS patients in Saraland and Satsuma.
He believes what connects all the cases can be found in Mobile Bay.
Ivy: "The prevailing winds tend to come fro the south and the southwest meaning, they're coming straight off salt air fresh, salt air, bathing the eastern shore daily, fresh, saline salt water...and yet this hideously high incidence."
In a nutshell, Ivy believes the air from the Mobile Bay could be carrying "something" that might trigger a hidden gene in some people who are prone to have ALS.
There are many theories about why there are so many ALS cases near Mobile Bay.
With no clear answers, we turned our attention to Alabama's state toxicologist Dr. Neil Sass.
Dr. Neil Sass: "I'm not saying that it is or it isn't. If it were a true environmental contaminant that's causing this, my first instinct would be why do we have so few cases that we do? Another thing is why does it appear everything is on the east side of the bay when the majority of the industry is on the west side?
Dr. Sass says a team of epidemiologists, genealogists and toxicologists are aware of the ALS cases in Mobile and Baldwin counties.
They met with a group of ALS patients just last week at the University of Alabama in Birmingham -- one of the most respected medical research institutions in the nation.
Doctors say they will launch a major medical research project where they will study the ALS cases along the coast, and try to determine if indeed there is an "ALS cluster".
Dr. Sass: "Cluster is a very scientific term and we do not have data to say that there's a cluster. There are cases there, we don't know how that compares with anywhere else in the state."
The team from UAB will be looking for specific information where ALS patients worked and lived for the past 10 years.
Dr. Sass offers this advice to anyone who may be worried.
Sass: "Most people that all people should go about doing what they do everyday, the way they want to live them. If there is something going on we hope to find out what it is.
For Susan Calhoun, and other families affected by ALS, they say it's a step in the right direction.
Calhoun: "A cure is around the corner I really believe that and I think they might find it in our area"
Medical experts say they wish they could agree.
Dr. Sass: "At this point there is no evidence knowing "anything" that causes/triggers ALS. That's what we would like as an ultimate goal is to hopefully to find out, but a lot of time and effort has been put forth around the world and so far, nobody knows what causes ALS.
The research team from UAB will be sending a letter to every neurologist in the state of Alabama.
It will explain what the team is doing and ask for information to track every case of ALS and see how it compares to the number of cases in Mobile and Baldwin counties.
My father-in-law died of ALS in '97 at the age of 57. It's certainly a hard way for kids to lose their grandpa.
You forgot the sarcasm tag...
I know it is newsgeezer. Our youngest was just learning to speak when my MIL started losing her ability to speak. They developed their own language and 'the baby' could understand her when all we could hear were grunts and moans.
If you start a ping list for this subject, please include me. My grandmother is one of the ALS cases in the Point Clear/Bon Secour group and I have a 4 year old niece who is battling (successfully so far) leukemia (ALL type). She lives in the same area. I, too, grew up on the bay, crabbing and floundering, and learning to swim right infront of my parents' home. I find it hard to believe it's the water, but perhaps some other environmental factor. Your point about the spanish moss, the north wind and the paper mills is also a memory I share.
There have been cases where people with ALS-like symptoms had mercury-amalgam fillings removed from their teeth and showed an immediate improvement. Mercury certainly seems to be an aggravating factor for ALS, if not the cause.
I did...??
I see that now - I didn't notice that when I copied and pasted the URL info, it inserted freerepublic info too. I tried again and it did the same thing...
I remember the "Don't eat the fish warnings" due to mercury testing but that involved certain of those swampy areas north of Mobile.
I would be surprised if the ALS cases were linked to smelly paper mills because such mills are just about everywhere.
I would not hesitate to swim in the waters of the Bay except I would not do so at night because of certain large critters.
Another good point. Recently there has been a huge move to the Eastern Shore...the population is way out of control and continuing to do so. (developers gone wild) That also affects the numbers. Tho the cases I have a personal connection with were Fairhopers from way back.
Your grandmother and niece will be in my prayers.
A friend died from ALS a few years ago. Very cruel disease. The comments above are quite interesting. This "rare" disease is evidently not rare in certain areas and I should think the medical community ought to sit up and take notice. Perhaps someone in a position to have influence should get in touch with the people charged with our public health.
ALS seems to be more prevalent in the male population and MS more so in the female population. I've always thought this was interesting and should invite investigation.
FYI, I have always suspected that the "no-see-ums" (midges) that we have in the area carry an infectious agent similar to Lyme Disease. I was raised in the Theodore - Grand Bay area and left the area right after high school.
When I decided to retire (at age 50), I came back to the area, bought property cleared it and built a new house.
During the clearing of the property I was floored by something? I went from wanting to work from daylight to dark to barely being able to get out of bed...I was tired and slept all the time, I became mentally confused and began to have panic attacks...all out of the clear blue. Suprisingly, daily antibiotics helped the situation.
I went to many doctors and even had a spinal-tap looking for Lyme disease, which came back negative. The MD's eventually sent me to a shrink where I was diagnosed with major depression and ADHD at the age of 50. They put me on anti-depressants and Ritlin...which didn't do a damn thing and I quit taking them after about a year and one-half.
I have been retired in this area for ten years now and have gradually gotten better over this ten year period. I'm still convinced something happened to me when I spent the time here to build the house. I still do very little and tire out easily. I'm in excellent physical health otherwise. I don't eat (never-have) the seafood in the area.
"(developers gone wild)"
Ain't it the truth! How I wish we'd bought property in Point Clear back in the 70s.
It might be nothing. Let's say for example, that the chance of a certain disease occuring in a population is 1 in 100,000. that does not mean that there will be one case in every locale of 100,000 people. Due to randomness and probability, there will be some areas that have sinificantly more than 1 in 100,000, and some that have significantly less than 1 in 100,000. It doesn't neccessarily mean tha there is something in the air where there are more than 1 in 100,000 cases.
You story of moving here and clearing your land are very similar to mine...curious to say the least. First thing we did after getting married was buy land 2 doors down from my MIL and start clearing it, the only parcel of land not previously a corn field so..lots of growth. I became pregnant almost immediately and then the stress of actually paying for the land and new baby set in! I've always associated my 'symptoms' to those and other life stresses.
The skeeters and 'no see em'... I've seen mention of Lyme Disease on various ALS forums and while they were trying to diagnose my MIL they ruled it out as well, but my MIL always felt like it somehow played into it all.
You mean you've never had a fried butterfly Gulf shrimp?! Heaven on earth man! lol
My grandpa bought land in Gulf Shores back in the 40's a block off the beach. It was either $500 or $1000 per lot, I can't remember.
We are currently looking to move as they are 5 laning the road we live on and will be taking alot of our property. Gotta make room for all the commuters. I've only been a Baldwin Countian since '82 and I sure do miss the old days.
"I went to many doctors and even had a spinal-tap looking for Lyme disease, which came back negative. The MD's eventually sent me to a shrink where I was diagnosed with major depression and ADHD at the age of 50. They put me on anti-depressants and Ritlin...which didn't do a damn thing and I quit taking them after about a year and one-half."
I once tested positive for Lyme disease but it was a false positive. I was all wrapped up with weird symptoms and I attributed it to a mosquito bite. I even became convinced I had ALS after reading the various symptoms. (Reading medical journals will drive one crazy) I eventually concluded it was due to a fall I had at my house and also arthritis in the spine. I've just learned to live with it.
ALS scares the bejeesus out of me.
My sister has been investigating all the ALS/MS stuff for a while. I'll have to get her to add this article to her dossier. Her research does show that perhaps the water doesn't have anything to do with it, and maybe it's the air. I have to believe that if it were the water my whole family would be dead from mercury poisoning. Considering all the fish and shrimp we've eaten out of the front yard, it seems likely that at least one of us (there's 7) would be sick.
We are about a mile south of Brookley Field. The Mobile side of the Bay is pretty trashy, but there's always been plenty of wildlife around. The Eastern Shore is much prettier.
I think I remember her talking about the incidences of "sickness" being higher toward the mouth of rivers that dump into the bay. Satsuma, Saraland, Pritchard, and Chickasaw are all in close proximity to each other, and really close to some of the industrial plants out on the river. I know the paper mills put out some darn toxic smells, but I wonder if they have anything to do with the ailments. My Grandfather worked for International Paper for something like 40 years and died at 83, so who knows.
The Bay does "flush" quickly because it's so shallow. In fact recently nearly all the water was replaced thanks to Ivan. The jog the storm took to the east just before landfall put the eye wall east of the Bay and sucked all the water out. The surge when the storm came ashore filled it back up, but the surge strength was minimal west of Gulf Shores.
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