Roger Long was a high school hoop star. Now the man from Peru, N.Y., uses a wheelchair and relies on an air machine.
"The hardest part to deal with is the slow, gradual progression of not being able to do something," Long said.
The 61-year-old was diagnosed three years ago with ALS, also known as Lou Gehrig's Disease. It attacks nerve cells in the brain and spinal cord. Long's family and friends help him with his day-to-day activities.
"The care someone needs; it becomes more extensive as times goes on, but you just find ways to do it... Sorry, I didn't want to cry," wife Darlene Long said.
Roger Long grew up in Cadyville. Ever since he was little, the outdoor enthusiast enjoyed swimming and fishing in the Saranac River which is part of the Lake Champlain Basin. Researchers at UVM and Dartmouth want to know if his exposure to the water is what caused him to develop ALS. One of the primary focuses-- toxins from algae blooms in the lake.
"So if people are exposed to those toxins either through drinking water, washing in that water, swimming in that water or through aerolation, little particles in the air that they may inhale, or through eating fishing that are contaminated by those toxins," said Dr. Rup Tandan, a professor of neurology at UVM.
Nationwide, for every 100,000 people, an average of two people will suffer from ALS. But between Plattsburgh and Elizabethtown about a dozen people have been diagnosed with the disease. All live near the lake. It's the only cluster around Lake Champlain. The researchers are trying to find out why these patients and not others developed ALS. Over the next several years, 1,000 people will be asked to fill out surveys. Researchers will ask questions about exposure to various toxins in the lake, military background, medication intake, diets and genetic makeup.
"There is a prevailing hypothesis or theory that some people who come down with ALS may not only have these environmental exposure, but they may already be genetically predisposed, in the sense that they may have a certain genetic makeup, including with certain specific genes that does not allow them to deal with these toxins as efficiently as other people may be able to," Tandan said.
Roger Long says he knows there is no "magic wand" that will cure him. But he tells his story to spread awareness about the disease that is slowly taking over his body.
"I'm desperate for a cure for future people who may contract the disease. I don't want anybody going through this," Roger said.
"Then there are moments of tears, when you recognize things are progressing and you are losing more," Darlene said.
The Longs hope researchers hit a home run soon and find a cure for the disease that is named after one of baseball's greatest players who lost his life from it.
Researchers are also studying a cluster of ALS patients around Lake Mascoma in Enfield, N.H., as part of this study.
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