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IAN HILL Epilepsy doesn't just affect the brain

Saturday, August 31, 2002

CANFIELD -- Janet Mau showed me my brain on Friday. Then she showed me my brain on epilepsy, a seizure disorder I was diagnosed with last year.
"It's like a shock to the brain," said Mau, as several red Christmas lights glowed on a carpet hanging behind her. The carpet was shaped like a brain. "All the neurons are firing."
Mau is director of the Mahoning Valley Epilepsy Fund Inc. The carpet is hanging on the wall of the organization's booth at the Canfield Fair.
The carpet is used to educate children about epilepsy. Typically, it's only dotted with a few blinking white Christmas lights. The white lights represent normal brain activity, Mau said.
When a child asks about epilepsy, Mau turns on the red lights. The child is asked to throw Velcro balls at the carpet until the red lights dim. The balls represents the drugs used to treat seizures.
Seizure during lunch
I'm glad my girlfriend, Kate, hasn't seen the carpet. She'd have me throwing balls at the brain for hours on end.
"Always take your medicine!" Kate would say.
She's been like that ever since I had a grand mal seizure while eating lunch with her in Columbus last year. A grand mal seizure occurs when a person blacks out and loses some muscle control for a few seconds or minutes.
The last thing I remember before having the seizure is eating a turkey sandwich. My concentration wavered, and I suddenly got dizzy.
A few minutes later, I woke up on the floor. My head was spinning and my stomach felt like it was trying to crawl up my throat.
Know what to do
Many feel confused and drowsy after waking up from a seizure. Mau stressed that it's important for people with epilepsy to have a group of friends that know how to react to seizures.
A first-aid instruction sheet available at the epilepsy fund booth recommends cushioning the head of a person having a grand mal seizure.
A person having that kind of seizure should be turned on their side to keep their airways clear, and their glasses, ties, and neck jewelry should be removed. The seizure should be timed.
Bystanders should call paramedics if the seizure lasts more than five minutes or the person stops breathing or has multiple seizures in a row.
Education is the goal
Mau said the goal of the epilepsy fund is to educate people about care for seizures while also helping people with the disorder lead normal lives. She said the fund tries to educate students about classmates with epilepsy. It also helps people with epilepsy find jobs.
"The condition is so scary that perhaps its easier for [employers] to look another way rather than take on the challenge of someone who has a seizure," Mau said. "We find that those who have seizures make good employees because they're happy to have those jobs."
About 1 percent of Americans have epilepsy. Some of those cases are caused by head injuries, strokes or tumors. Most, however, have no known cause.
Less than 10 percent of people with epilepsy have a father or mother with the disorder.
Medication can control seizures for about 30 percent of those with epilepsy.
Mau said the 6-year-old fund hopes to have offices in Austintown or Canfield before the end of the year.
After going to the hospital in Columbus, I told Kate that I had been too busy to refill my prescription of Dilantin, a drug that helps control seizures. She wasn't pleased.
I was prescribed Dilantin last spring after having a seizure in a parking lot at the corner of Mahoning Avenue and state Route 46 in Austintown. I told my doctor that my father has epilepsy, and my great-grandfather was diagnosed with "falling down disease."
My doctor still gets a kick out of that.
"Falling down disease, right?" he says when he sees me.