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Sikeston resident taking on ALS

Sunday, March 27, 2005

(Photo)
Mary Calhoun holds a photograph of her father and sister who both died from ALS. Calhoun is selling ALS bracelets to raise funding for research.
SIKESTON -- Anyone who has ever read the national best seller, "Tuesdays with Morrie," may have an idea of what life is like for someone who has been stricken with Lou Gehrig's disease.

But Mary Calhoun of Sikeston has lived it -- over and over again.

Over the past 20 years, at least five family members have suffered from the incurable neurodegenerative disease officially called amyotrophic lateral sclerosis, or ALS.

Calhoun's family's most recent victim to ALS was her sister who succumbed to the disease in December.

Now Calhoun is taking on the disease in an effort to educate and fund research. Recently some of Calhoun's family members sent blood samples for ALS research to the Feinberg School of Medicine in Chicago.

"Anything we can do to stop this disease, we will," Calhoun said.

And when the official ALS bracelets came out earlier this month, Calhoun jumped at the chance to help and contacted the St. Louis Regional Chapter of the ALS Association.

"By raising money for the ALS Association and donating our blood, we are trying to help them find a cause or cure so they can take control of it," Calhoun said.

Although the disease has existed for 135 years, there is still no known cure and no treatment. The only medicine that has been federally approved is rilutek, and a person who takes, if soon enough, may extend their lives by 30-90 days.

"A lot of people don't even know what ALS is," Calhoun observed.

ALS or Lou Gehrig's disease is a neurodegenerative disease that attacks the nerve cells in the brain and the spinal cord.

"Motor neurons run along the spinal cord, and they send messages to the brain and to the muscles. And with ALS, the motor neurons die," explained Bob Wessels, executive director of the St. Louis Regional Chapter of the ALS Association.

Ultimately those stricken with ALS become a quadriplegic, Wessels said.

"You can't communicate. Your brain is perfectly normal, and what happens is you become trapped within your own body," Wessels said.

Some of the things that contribute to the death of ALS patients include the muscles atrophy and eventually the muscles in the lungs give away and a person can't breathe on their own.

"Their body becomes such a weakened state that things such as the flu and pneumonia can have devastating effects on ALS patients," Wessels said.

Two forms of ALS exist in the United States, Wessels said. One is sporadic and it affects 90 to 95 percent of all cases and the other is familial, which affects about 5 and 10 percent and is the kind that runs in Calhoun's family.

In those families, there is a 50 percent chance each offspring will inherit the gene mutation and may develop the disease. Calhoun said contracting the disease is a constant worry of her family members.

"It's not a disease that's going to take you off the earth right away, it lets you linger on here," Calhoun said about ALS.

The disease doesn't affect only the patient, but the spouse and family members are also affected, and there's usually more than one victim with ALS, Wessels pointed out.

Calhoun agreed.

"It's very hard living and watching a loved one go down hill gradually. What it usually starts out as losing control in their hands and goes from one body part to the next body part," Calhoun said.

As ALS progresses patients go from feeding themselves to having someone else feed them then having a feeding tube and help with personal things such as using the bathroom, Calhoun said.

"Your mind is still there and you know what's going on with you. My sister she couldn't move, but she could move her eyes and you knew she understood what you were saying," Calhoun said.

ALS is also a major costly disease, Calhoun said.

"The one medicine that is prescribed, I think, costs about $600 a month," Calhoun said. "And insurance won't even pay for it because it's an experimental drug."

Wessels said selling the ALS bracelets, like Calhoun is doing, is a great way to raise money for ALS research and services because there is a tremendous need for funding. The ALS Association, especially the St. Louis Regional Chapter, which serves all of eastern Missouri and southern and central Illinois, provides free in-home services for ALS patients and family members.

Cost of the authentic ALS bracelets, which feature the phrase "Strike Out ALS" is $1, and they are available at Family Dollar in Sikeston or from the St. Louis Chapter Web site. The bracelets are red and similar to the other awareness bracelets currently being sold throughout the United States.

"I'm just trying to get the word out about ALS," Calhoun said. "If people don't know to help, then how are they going to help?"

For more information, contact the St. Louis Regional ALS Association by visiting www.alsa-stl.org or calling 1-888-873-8539.