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Morgantown resident talks about living with ALS

Published: Jul. 28, 2021 at 10:13 AM EDT
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MORGANTOWN, W.Va (WDTV) - Amyotrophic Lateral Sclerosis (ALS) affects between 12,000 to 15,000 people across the U.S., according to the CDC.

ALS has a 100 percent fatality rate with no known cure, but there are treatments. Morgantown resident Seth Poling has ALS and says, “On average life expectancy is 3 to 5 years. Currently there are only two medications Food and Drug Administration (FDA) approved. At best, those medications could add a few months to my life.”

On Thursday, the House Committee on Energy and Commerce will hold a hearing with the FDA about access to ALS treatment. With the hearing date getting approaching, Seth says it’s important to spread awareness and learn more about the disease and possible treatments.

Seth’s story with the disease started in 2014 when he was on a cruise and noticed some twitching in his right shoulder. He just thought it was the result of an old sports injury, but that’s how ALS works -- it kills the nerves that move muscles. After eight months, he found out he had a torn rotator cuff, but his doctor recommended a second opinion. That second opinion from a neurologist led to concern, but they still didn’t think it was ALS because he only had twitching in both arms and weakness in his right hand. After a year went by, he noticed he was slurring his speech in 2017 and that’s when he got the diagnosis. “My mother and mother in law asked me to seek another opinion,” said Seth. “This time I went to Johns Hopkins on June 29, 2017. I was officially diagnosed with ALS.”

Since this diagnosis, it’s been hard for Seth -- a husband and father of two -- to help his family. He said, “Battling ALS is difficult for anyone. It’s extremely difficult with a 2 and 3 year old. I can no longer walk or move my arms or my hands. I can’t change diapers, make food or pick my boys up.”

Seth relies on technology to get through life, like his eye gaze communication device and wheelchair, but there is more to Seth than what meets the eye. “My motivation to keep going is my wife and kids. Their my rock. I can’t wait to see what my ornery boys do next. My family needs me no matter what my physical abilities. I am just bull headed and refuse to quit. I attribute my will to live to playing sports and my sense of humor. I want to win and have fun. Adapt and overcome.”

Seth says that his wife is like super woman along with the rest of his family that works tirelessly to help him out, including his aid. Most importantly, Seth wants people to know that ALS isn’t hopeless and it doesn’t have to be a death sentence. He encourages people to go to iamals.org for more information and to help the fight against the disease.

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