BOARDMAN, Ohio (WYTV) – Twenty-six months after being diagnosed with ALS, Christine Terlesky gets around the first floor of her Boardman home in a wheelchair.
Her muscles, wrists, fingers and ankles have been zapped of their strength. She is one of 30,000 people in America with the disease, for which there is no cure.
‘It is a good thing only 30,000 people have it. But at the same time, I don’t think there is that drive to get anything done,” Terlesky said in an interview last week with WYTV 33 News anchor Stan Boney.
ALS is amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, after the New York Yankee who died from it. But 75 years later, little progress has been made.
“The money is not there as you would say like cancer or heart disease or something else, because not that many people are afflicted with it,” Terlesky said.She is the daughter of long-time Boardman girls basketball coach Ron Moschella, who now coaches at Columbiana.
She is on one ALS drug, which she said is supposed to lengthen her life by two or three months. There are other drugs being tested, and Terlesky wants to try them, but they are not FDA approved.
“How much worse can it get? It can’t get much worse, so just let us try it,” Terlesky said.There is some stem cell research being done on ALS and she would love to take part in the study.“I have a better chance honestly of winning the lottery than I have of getting in a clinical trial,” Terlesky said. “If you don’t live in the state where they are doing a clinical trial, they won’t even look at your application.”
Last May, Terlesky traveled to Washington, met with Congressman Tim Ryan, D-Niles, and advocated for more ALS research funding.
She has become somewhat of a celebrity.
“People think that they know me and it is really nice. I always get well wishes,” Terlesky said.
Terlesky is going all the way with ALS. The next step is to have a feeding tube inserted, just in case.
“But I told the surgeon I signed a living will, but for this one, try to get me back because I am not ready to go to that jump,” she said. “I am luckier than some people with the things I can do and I just want to keep it as long as possible.”