HOSCHTON -- With hands that once formed powerful salutes, National Guard veteran John Conley now fumbles in an attempt to shake hands. Smiling, he and his wife Sandy are seated on a sofa with his guide dog curled up at his feet.
"I have never been put in a position where I had to fight for my life, until now. And I'm fighting," Conley said.
The Hoschton resident spent four years in the National Guard but was never deployed. The battle he now faces is Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease. ALS is a progressive, fatal, neurodegenerative disease which causes muscle weakness and atrophy throughout the body.
The veteran, who considered it his duty to serve during his days in the National Guard, now serves in a different capacity. His current mission is to raise awareness about ALS by being an inspiration and a source of strength to others. He speaks to audiences about the disease and encourages fellow patients by saying, "We're all soldiers in the battle against ALS."
Conley was selected to share his story as a part of the Muscular Dystrophy Association's online series "ALS: Anyone's Life Story." The 31-day awareness campaign highlights a patient's story every day in May, which is ALS awareness month. His story is featured on the website today.
After receiving his ALS diagnosis, Conley told his doctors "I'll be your best fighter." It's been three years since he first began to experience ALS symptoms. Starting in February of 2009, he began to feel sharp pains in the back of his legs as if someone stuck a knife in them. The leg pain continued and soon his arm muscles began to twitch. These instances took over his entire body and in August of 2009 he was diagnosed.
Shakily outstretching both arms, one in a brace and the other brace-free, he signals to the brace-free arm to show the extent to which the muscles have shrunk. Without a brace, his left arm hangs almost lifeless. Although he commands his left index finger to move, no action follows. Motor neurons, which connect the brainstem and spinal cord to muscle fibers, have stopped sending nerve impulses to muscles in his arms and legs.
Commenting on his symptoms he said, "Those I'll take, as long as I'm breathing good." The Conleys said most affected patients die of respiratory complication within two to five years after diagnosis.
Stroking her husband's arm, Sandy, a nurse at Gwinnett Medical Center in Duluth, said, "It was hard to separate being a wife from being a nurse."
Initially, Sandy's knowledge of ALS weighed heavily on her because there is no known cure and no method of care. Every three to four months her husband goes to palliative care in which doctors monitor the progression of the disease and try to alleviate his pain.
Sandy refers to ALS as "the most dehumanizing disease" and said there were many tears at the beginning of their journey. Support groups helped at first but their effects wore off. "Once you wrap your brain around it, you don't want to live it and see it all the time," she said.
Her husband agrees, and suggests patients with ALS read about it and digest it but move forward and battle the disease.
Conley's most recent attempt to move forward and battle ALS is participating in a stem cell trial at the Center for ALS at Emory University. Although doctors cautioned him that the treatment would not stop or slow the progression of the disease, he said there was never a doubt as to whether or not he would participate. He hoped that the trial might have positive affects for him but desired to find a cure for others.
"No matter how terribly you're affected, there's always someone who's worse off than you," he said, repeating his mother's wisdom. This mantra, his faith in God and the support of his family give Conley the hope and strength to carry on.
Shifting his weight and sitting up, he said, "I wake up every day happy."
For more information on ALS and to read Conley's story visit awareness.als.mda.org