BUCKHANNON – A local author shared her family’s experience with ALS during a recent Rotary Club of Buckhannon-Upshur meeting.
Mary Alice Poling attended the Sept. 20 Rotary meeting to talk about the book she wrote, “My Daddy Has ALS.” She wrote the book for kids like her own grandchildren, who are growing up with a father — Mary’s son, Seth — who was diagnosed with ALS at age 28.
“It was for other people’s children, to know how Seth and his boys related to each other,” Poling said.
ALS is a fatal, motor neuron disease, characterized by progressive degeneration of the nerve cells in the spinal cord in the brain and brain.
“It is often called Lou Gehrig’s disease after a famous baseball player,” Poling said. “ALS is one of the most devastating disorders that affects the function of nerves and muscles. ALS does not affect mental functioning or the senses, such as seeing and hearing, and is not contagious. There’s no cure for the disease.”
ALS most commonly occurs in people from ages 40 to 70, but it can occur at a younger age. Seth Poling was diagnosed when he was 28 and the average life expectancy is between three and five years after the diagnosis. About 30,000 US citizens are living with ALS and the odds of being diagnosed are one in 300.
“There are two types of ALS: sporadic is the most common, it makes up between 90 and 95 percent of all cases, and these are random,” Poling said. “Then you have the kind that is passed down from generation to generation. Seth had sporadic, so we don’t know what caused it. It could possibly be a hit from playing football, it could be something when he was golfing with his dad and they sprayed the course or something like that — we have no idea.”
ALS affects each individual differently, and this contributed to a long, drawn-out diagnosis that took years for Seth.
“It took us from 2014 to 2017 to get a diagnosis, taking us from Ruby to Cleveland Clinic and then back to Johns Hopkins,” Poling said. “He first noticed a twitch in his arm in 2014. We thought it was just a rotator cuff problem.”
Seth’s symptoms began in his arm and shoulder, which eventually made it difficult to use his hands, and eventually, his family noticed he was slurring his speech.
“I really didn’t notice it until somebody in our family at a holiday event asked if he’d been drinking, so it was starting to affect his voice and then the swallowing and eating,” Poling said. “He had to have a feeding tube and then he decided to take a more drastic step, which a lot of people don’t do, and we decided to do the ventilator. A lot of people don’t like to go with that extra life-saving measure, because it is very difficult.”
Poling also recalled their struggle to obtain a drug that would help lessen the symptoms and potentially extend Seth’s life.
“You take it 14 days, and then you’re off for the rest of the month,” Poling said. “At that point, when he started, it was like $50,000 for those 14 days. It took Erica and us six months to get him approved. I called President Trump, I called Shelley Moore Capito, we wrote the insurance company letters, we did everything to try to get him approved for that drug, until Erica said, ‘We just haven’t talked to the right person.
“Finally, she talked to their insurance person, and this one lady said, ‘Go to your insurance policy, and on page 125, there are four questions. Answer those four questions and give me the backup that proves the answers and fax it to me.’ That was on Friday afternoon. Monday morning they approved it, so somebody could have told us that six months earlier. Now that drug comes out in a pill form, but again, it is very expensive.”
Seth Poling discusses his battle with the disease via social media and recently made an appearance before a B-UHS football game, talking about his condition and his time as a football player.