People affected by epilepsy want others to understand

Fighting depression is
another common
experience.

By WILLIAM K. ALCORN

VINDICATOR STAFF WRITER

AUSTINTOWN — Patricia Davis, 59, was a schoolteacher. Thomas Capp, 50, worked in construction and is a machinist. Sparkle Sanders, 27, is a single mother with a 4-year-old son.

What they have in common is epilepsy and the desire for people to better understand the disorder that dominates their lives.

They chose November, National Epilepsy Awareness Month, to gather at the Mahoning Valley Epilepsy Fund and tell their stories.

Davis was 21 and a student at Westminster College in New Wilmington, Pa., when she had her first seizure.

“I had just finished an exam. I ran to my dorm and up three flights of stairs to my floor and bent over a water fountain to get a drink. That’s when I had my first seizure,” she said.

Capp was diagnosed at the age of 17 while attending Lordstown High School. His first episode occurred at home. He was examined by local physicians and at the Cleveland Clinic, but doctors could not find anything wrong, he said.

Sanders is not epileptic, but her son DaVail is. He began having seizures at 3 months and was diagnosed with epilepsy shortly thereafter. He has 15 to 25 seizures a day.

DaVail, enrolled in the special needs preschool at West Elementary in Youngstown, takes four medications daily. He has had four brain surgeries and a vagas nerve stimulation (VNS) implant.

The device sends electrical pulses through the vagas nerve in the side of the neck to the brain. It can reduce the number and intensity of seizures and reduce the number and amount of medications needed to control seizures.

Seizures that used to last 10 minutes now last just seconds, Sanders said.

She said epilepsy has slowed DaVail’s mental and physical development, and she does not know what the future holds for him.

While she said DaVail’s condition is nothing she would have wished for, she said some positive things have come from it.

“Because DaVail demands more of me, I demand more of myself,” she said.

Sanders, who had started college after graduating from East High School in 1998, quit to go to work. After DaVail was diagnosed, she devoted all of her time to him for four years.

“It came to the point where I was limited in what I could do for him. It’s very hard, because you just want to fix it,” she said.

Sanders said she suffered from depression and went into counseling. “I am just starting to do things for myself, such as going to school,” she said.

Sanders, a volunteer coordinator and visitation monitor at Hope House, is a junior at Youngstown State University, where she is studying social work. She wants to work with family and children.

Her son’s epilepsy gave her a chance to go back to school. One day while at the Mahoning Valley Epileptic Fund office picking up some information, a representative of UCB Pharmaceuticals was also there. They began to talk. The upshot of the conversation is that Sanders was offered a $5,000 Keppra Family Scholarship. Keppra, made by UCB, is one of the drugs that DaVail takes.

The depression that Sanders experienced is another thing in common between the three.

Capp, a 1975 graduate of Austintown Fitch High School, says he is capable of working and wants to work. But he hasn’t worked for two years and has applied for Social Security disability.

“What else can I do? If I get hired, they fire me before the health benefits kick in,” he said. He said he had good jobs at a couple of union shops, but the plants closed.

He has artistic talent and hopes to turn that into a way to earn money, possibly doing graphic arts on a computer.

“I think a lot things that happen to me make me feel bad. I think, where would I be if this hadn’t happened. If you’re not strong, you can’t get over it. It makes you feel empty,” Capp said.

What really helps overcome depression is to be a valued person. One way to do that is to help tell about epilepsy and give people a better idea what it is all about, said Janet Mau, executive director of the Mahoning Valley Epilepsy Fund.

“I would want people to not be so afraid of people with epilepsy and to hire us, or at least give us a chance. Don’t be afraid to sit by me in a social situation. I might be quiet and not say a lot, but I do have opinions,” Davis said.

“You need friendship. That leads to freedom and hope,” she said.

Also crucial to treatment is finding the right doctor, they agreed.

“You need the right doctor, one who will take time and respect you and give you the right medication. You have to be able to trust your doctor,” Davis said.

“Finding a doctor you are comfortable with and one who will address your concerns is very important,” Sanders said.

alcorn@vindy.com