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Epilepsy advocate,area resident, tapes TV show on topic

November is Epilepsy Awareness Month

Staff photo by Ted Cox November is Epilepsy Awareness Month, and Steve Moore, of Mason, is one of nearly 60 Epilepsy Advocates from across the country. Moore also co-hosts a cable TV show with Tom Koprowski. Here, they prepare to tape a show on their set in Highland Heights, Ky., on Nov. 18.  STAFF PHOTO BY TED COX

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By Ted Cox, Staff Writer 2:15 PM Tuesday, November 22, 2011

HIGHLAND HEIGHTS, Ky. — Sitting in the studio preparing to tape his cable TV show near the campus of Northern Kentucky University, Mason resident Steve Moore was relaxed and cracking jokes.

The 55-year-old hasn’t beaten epilepsy, but he’s come a long way in dealing with the chronic neurological disorder that changed his life dramatically in 1987.

“There was a lot of depression there,” he said. “It would just frustrate me. I’d see the family and what they’re going through. There was nothing I could do about it.”

But what frustrated him most in his first 10 years of dealing with the disease was the lack of information.

Epilepsy affects approximately 3 million people of all ages in the United States, or about 1 in every 100 people.

“There’s so much ignorance about epilepsy,” Moore said. “It’s always been a disease that was hidden.”

November is Epilepsy Awareness Month, and Moore is one of nearly 60 Epilepsy Advocates across the country. He was chosen after being a longtime volunteer for the Epilepsy Foundation of Greater Cincinnati.

He joined the foundation seeking support when, after two brain surgeries, he still was having seizures.

The seizures started when he was 31. He was at work and had the more dramatic convulsive seizure, called tonic clonic.

“It was just out of the blue,” he said, adding that he was healthy and active at the time, running 25 to 30 miles a week. “The next thing I know I’m waking up, and everybody is kind of looking down at me.”

Two brain surgeries in 1988 to remove a lesion helped cut out the tonic clonic seizures, but he would have regular complex partial seizures.

“It’s a momentary lack of consciousness,” Moore said. “People around me would say I just got a dumb look on my face.”

It changed his life in many ways. He wasn’t allowed to drive, and at his job as a computer systems support specialist for a pharmacy chain, he wasn’t allowed to be left alone.

“I have two girls, and suddenly Dad couldn’t drive to take them to soccer games or go to practices,” he said of his daughters, 8 and 12 when he had his first seizure. “I still pushed myself to go to work and exercise. I just wanted to get back to where I was, but we found out that the more I pushed myself, the more seizures I’d have. So it was just a vicious cycle I was in at that time.”

In 2000, an MRI showed Moore’s tumor was coming back. Doctors then performed a third brain surgery, removing the area that affects short-term memory, but also discovering the removed tumor was cancerous.

The good news was the cancer was contained and the seizures stopped. He’s only had one seizure since 2000.

He still has to take anti-epileptic drugs, but he’s able to drive again and is active with his two granddaughters.

The anticipation of seizures never goes away, Moore says, and his wife handles his finances because of worries about his short-term memory. When his company was bought out at age 50, he lost his job he hasn’t been able to find full-time work since.

But he’s dedicated himself to being an Epilepsy Advocate. In addition to his once-a-month cable show “Epilepsy Today” that airs on cable public access channels across southwest Ohio with co-host Tom Koprowski, Moore speaks at schools on epilepsy and goes to Camp Kern in Oregonia in the summer for Camp Flame Catcher, which caters to kids with epilepsy.

Contact this reporter at (513) 483-5245 or Ted.Cox@coxinc.com.

Life

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