'Epilepsy isn't contagious'

By BETSEY BRUNER
Sun Staff Reporter
04/20/2003

Flagstaff teenager Paul Babbitt III has epilepsy. He also has one strong hope: That people will not be afraid of him. 

"Epilepsy is not contagious," said Paul, 14, a student at Northland Preparatory Academy. "It is not as bad as people think it is. People are scared of you. People are nervous. They want to stay away from you. They're afraid they're going to get it, or you're going to have a seizure in front of them."

Since receiving a diagnosis of epilepsy two years ago, Paul has tried hard to adjust to the disease, a condition marked by recurrent seizures.

"Before, life was great," he said. "Now, there's certain things I can't do. I'm kind of learning to accept it."

Accepting his disease means not playing baseball anymore, something he used to love to do as a Little Leaguer.

"If they throw balls toward me, it might send me into a seizure," Paul said. "Other than that, I'm athletic. I work out and swim. I can play really gentle softball, if the ball is traveling really slowly, and doesn't get off the ground."

He also bicycles, and loves to hunt wild duck on the Verde River.

He skis at Snowbowl and Purgatory, Colo., and attends adaptive ski school.

"They clip you into a lift so if you go into a seizure, you don't fall off a lift," he said.

Accepting his disease also means losing some old friends, keeping others and, he hopes, making new ones.

"Some friends, they start just not being nice to you," he said. "They think you're going to give them epilepsy. I've kept a lot of my old friends. New friends, I've made a few this last year. That's also why I switched schools."

Paul lives in downtown Flagstaff with his father, District One County Supervisor Paul J. Babbitt Jr.; mother Mary Kuzell-Babbitt; and sister Marney, 17.

At the time of his diagnosis, Paul already was dealing with a processing deficit caused by cerebral palsy that has affected his learning abilities.

"Then you add epilepsy on top of that, and it's very challenging," his mother said. "It slows down the brain, kind of like you're drunk. He also can't write. We have voice-activated computers."

 SPEAKING UP IN D.C.

Despite his health challenges, Paul is a fighter, dedicated to helping improve the lives of people with epilepsy.

He just returned from Washington, D.C., where, accompanied by his father, he participated in Kids Speak Up, a new national program sponsored by the Epilepsy Foundation.

The program helps families of children with epilepsy make their voices heard in the halls of the Capitol as advocates for the nation's 2.3 million children and adults with the disorder.

He was one of 37 young people 14 years and under with epilepsy who participated in the program. They traveled from their home states to Washington to tell legislators about their experiences with epilepsy. Their main goal was to explain why it's critical to fund programs to educate the public.

Epilepsy is sometimes called a seizure disorder. It is a chronic medical condition produced by temporary changes in the electrical function of the brain, causing seizures that affect awareness, movement or sensation. It is the most common neurological condition in children, and the third most common neurological condition in adults, after Alzheimer's and stroke.

Paul was selected to participate in Kids Speak Up because his health challenges are representative of those faced by many of the 350,000 children with epilepsy in this country.

Before the trip, Paul was optimistic about the impact his efforts might have back home.

 "I feel I'm going to be able to do a lot of good for epilepsy in the state of Arizona, mainly young people, but adults, also," he said.

 The Babbitts stayed at the Metro Center Marriott with the other Kids Speak Up participants, each accompanied by their own adult.

They had some fun, too -- visiting with one of Paul's uncles, Bruce Babbitt, and touring the Smithsonian Institution and the Spy Museum. They also worked hard, making the rounds of lawmakers.

"I think it went very, very well," said the senior Babbitt, who is familiar with pushing through funding for causes after holding elected office in Flagstaff and Coconino County for two decades. "We went to the Hill and spent a hard day visiting the delegation. Paul's message on behalf of the Epilepsy Foundation was to ask for an appropriation to address research and development needs at two federal agencies:  the National Institute of Health and the National Institute of Neurological and Stroke Disorder."

Babbitt said that he and his son asked the House to sign what is commonly known as a "Dear colleague" letter in support of appropriations for funding epilepsy causes.

"The members write to each other and say, 'Yes, we will sign on to this appropriation request.' We had a fine reception from all members of the delegation, and we had a commitment from Mr. (Rick) Renzi that he would sign the letter."

With his father's help, Paul learned a lot about the political process during the four days in Washington.

"Senator Kyl and Senator McCain aides say that they would support the epilepsy bill," he said. "We don't know about Representative Pastor, and we don't know about Representative Hayworth, but Representative Renzi signed on right away, and those three were given some kind of letter to sign."

Paul also met briefly with New York Sen. Hillary Rodham Clinton, but found the experience "kind of weird, seeing someone famous."

NOT GOOFING OFF

The Babbitts are back in Flagstaff, and Paul is working extra hard at school, where his condition is a learning handicap.

"It affects the rate you think at," he said. "It's hard, because people think you're goofing off, but you're actually thinking. It's hard to focus."

His favorite subject is science, when he understands it.

"I may want to be a scientific researcher," he said. "If there's only one thing I want to do it's find a cure for epilepsy. They'll find a cure, eventually. It might not be in my lifetime, but eventually. They would need multiple cures, because there's several kinds -- just electrical and brain damage."

Paul has a combination of seizure types that require multiple medications to treat. His simple, partial focal seizures are frequent and include random movements of parts of his body. He also has grand mal seizures, or convulsions, during which he may lose consciousness and fall the ground.

He describes epilepsy in his own, vivid words:

"It's like your brain is a switchboard and it's short-circuiting. That's how I would describe it, without getting really technical. Your brain is sending electronic impulses through the wrong nerves, and sometimes they overload too. The result: You go into a seizure."

Perhaps Paul's interest in science derives, in part, from his struggle to find a correct balance for his medications. He takes at least two types of pills each day to try to eliminate seizure episodes. Unfortunately, he does not find complete relief.

"The major side effect of the medicine, it makes you tired all the time," he said. "My medicine level, we think it's not where it should be. It's making me tired, and dizzy, and light-sensitive from white light, or something that's light or reflects light."

GIVE HIM SPACE

Paul also is interested in helping educate the public about seizure first aid. People often use the wrong techniques when trying to help.

"They pin you on the ground and try to get you to stop shaking," he said. "They put random things in your mouth to get you to not swallow your tongue -- which is physically impossible. They pump adrenaline into your system by holding you down and can make you seize longer."

If someone is having a seizure, you should move any harmful objects out of the way, give them space, place their head on the left side to secure their airway and let them seize, Paul said. Call 911 if the seizure lasts for more than three minutes.

Paul and his family will be participating in an Epilepsy Foundation seminar in Flagstaff Saturday. The seminar will be another opportunity to educate people about epilepsy, an often misunderstood condition.

 In Washington, Paul learned not to use the term epileptics, but, rather "people with epilepsy."

 Paul is a person with epilepsy, but his personality is his own -- strong, vibrant and upbeat.

He is not a victim, so don't be afraid of him. 

To see pictures of Paul go to the photo gallery.