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500 walk at Eastwood Field to aid ALS group
By Bob Jackson
NILES
Judging by the bright smile on her face, the warmth of her handshake and her genuinely positive spirit, you’d never know that Donna Marciano is essentially living out a terribly undeserved death sentence.
Diagnosed in 2012 with amyotrophic lateral sclerosis, or ALS, the former Struthers High School guidance counselor knows it’s just a matter of time. Still, she’s determined to stay positive, and to fight as hard as a guy named Rocky – who just happens to have the same last name as hers.
“I’m not angry,” the 64-year-old Struthers woman said. “I was never angry, and I was never whiny. I look around and I see so many people out there with disabilities. None of those negative things do any good.”
Marciano was one of some 500 people at Eastwood Field on Sunday morning for the 10th annual Youngstown Walk to End ALS, which is the ALS Association’s signature fund-raising event.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The damage leads to paralysis and, ultimately, robs patients of their ability to breathe.
According to the ALS Association, the average survival time after diagnosis is three to five years. There is no known cause or cure.
“My friends, my family, and my faith,” Marciano said. “That’s what gets me through. I thank God every day for what I still have. You have to look at the positives.”
The disease, more commonly known as Lou Gehrig’s Disease, so far has primarily affected the lower part of Marciano’s body, leaving her unable to walk, confined to a wheelchair, and dependent on her husband of 35 years, Nick, to be her constant caregiver.
She retired from her job at Struthers High in 2009, the same year Nick retired from the Youngstown Police Department. That also was about the same time she started noticing something wrong.
“Mine started with foot-drop,” she said. “My foot kept slacking when I walked. I couldn’t control it or stop it, and I thought, ‘This is crazy.’”
Donna said her mother had Parkinson’s Disease, and two cousins have multiple sclerosis, but she doesn’t know whether that family history contributed to her own disease.
“It’s just kind of like a lottery, I guess,” Donna said. Then, again showing her wide smile, she added, “But not a good one. I had three good years after I retired. It’s just day-by-day. You just go with it.”
Ben and Kasey Zizka came from Medina with their children, 5-year-old Lukas and 2-year-old Quinn, to take part in Sunday’s event. Ben, 36, had an uncle who died of ALS, and another uncle who is battling the disease.
He and Kasey, 33, said they obviously are concerned about the possibility of Ben, or one of their children, inheriting the disease, but medicine still hasn’t come up with a definitive way to tell.
“Even if you have the gene, there’s no guarantee whether you’ll get it or not,” Kasey said. “That’s what’s so scary.”
Ben said the family has attended all of the Youngstown ALS chapter’s walks and will continue to do so.
“We’ll walk until they figure it out,” he said.
Youngstown State University President Jim Tressel and his wife, Ellen, were honored guests at the event, and walked with the participants. They wore signs tagged to the back of their shirts that said, “For the Francis and the Terlesky Families.”
Tressel said his first experience with ALS was during his YSU coaching tenure, when former Brookfield High School football coach John Delserone was diagnosed with the disease in the mid-1980s. He said Delserone was an inspiration to him and to the YSU football team.
Jeffrey Francis was a good friend and a YSU booster, and was president of First Place Bank, who died of ALS in 2005, Tressel said. Christine Terlesky was a former standout athlete at Boardman High School, where she later taught social studies and was the girls basketball coach. She was diagnosed with ALS in September 2013. Her husband, Brian, is a former YSU football standout.
“It’s just a tough, tough, tough thing,” Tressel said, noting that last year’s Ice Bucket Challenge helped generate national awareness of the disease that had, until then, largely flown under the radar. “Now we just have to keep up that momentum.”
Mary Wheelock,executive director of the Northern Ohio Chapter of the ALS Association, said ALS inexplicably affects military veterans at twice the rate as civilians, regardless of whether the military personnel were deployed overseas or not.