By Molly Lovell

Staff Writer

Kristine Binette of Sanford is encouraging people to come out of the shadows and stand together to find a cure for epilepsy by hosting Maine’s First Walk for Epilepsy May 18 in Saco.

“Epilepsy is something a lot of people don’t want to come out and say they have. There’s still a lot of misconceptions. The walk is about educating, getting the word out and coming together,” she said. 

Binette was inspired to educate the public about seizure disorders when her 8-month-old daughter, Delia, was born with epilepsy.

She said epilepsy ranges from the very mild to very severe and that Delia is in the middle of that scale. Her seizures have lasted anywhere from 35 seconds to more than 10 minutes and at times have caused her to stop breathing. Epilepsy is defined as a neurological disorder characterized by recurrent, unprovoked seizures. Seizures are signs and/or symptoms due to abnormal or excessive neuronal activity in the brain.

Binette said sometimes Delia shakes, her back arches or she becomes very stiff during a seizure. After the seizure ends, Binette checks her daughter’s ability to make eye contact to be sure she’s recovering properly. 

“As she’s coming out she starts to cry and scream. When she was little she didn’t cry, now she’s more conscious of what’s going on and she doesn’t like it,” Binette said. 

When Binette learned of Delia’s epilepsy she felt “a whole mess of things,” she said. “You want something to say that’s the reason why.”

Amid experimenting with medications and doctor visits, both locally and in Boston, Binette said she and her husband began to believe that it was Delia’s destiny to have epilepsy.

“God placed her with us because he knew we would be able to take good care of her. This was going to be her future no matter what. You have to think about it that way,” she said.

Binette received much support from friends and family, but began to wonder about those people living with epilepsy who might not have such a support system. That’s when she contacted the Epilepsy Foundation of Massachusetts and Rhode Island to help her with developing a walk in Maine. The foundation serves more than 144,000 people living with epilepsy in Maine, New Hampshire, Massachusetts and Rhode Island. Binette serves as the walk’s executive director.

Through networking, Binette has seen how a lack of education about epilepsy has made those with the disorder feel isolated and frightened to be open about it, something she hopes the event will halt.

Judy Bullard of Scarborough is helping Binette get the word out about the upcoming walk because she has experienced that stigma. She was diagnosed with epilepsy at 8, and now at age 47, feels strongly that the general public needs to be educated about epilepsy.

“Growing up there was a lot of fear and a lot of misunderstanding. My parents were afraid and didn’t want to tell people I had it. They wanted me to be normal,” Bullard said. 

During childhood she had grand mal seizures but currently and for most of her life Bullard has simple partial and complex partial seizures. During these seizures she might experience loss of speech, loss of motor ability in a hand or she might briefly stare blankly.

Bullard also has catmeniel seizures, which are triggered by hormone changes in her body.

She said stress, anxiety and talking on the phone can trigger a seizure. 

Three years ago she had a Vegas Neuro-Stimulator implanted in her chest, which sends messages to the brain to regulate activity so seizures won’t occur; for Bullard this multiplied the seizures from six to 24 in one month and she had the device removed within a year.

Besides medication, Bullard tries to control her seizures though relaxation exercises. She also gardens and works with animals, which helps, she said.

“When I have a seizure the most I want you to do is say, ‘Are you OK?’ I don’t want you pawing at me or trying to remove me from the situation, as long as I’m safe,” she said.

During her 20s Bullard recalls having a seizure at work and being told to take time off. Upon arrival back at work, she learned her position was eliminated.

She also recalls having a seizure in a bookstore during which patrons panicked.

“The whole issue with me for epilepsy is it’s been in the dark ages, still, there’s not enough education. I live a normal life as most people do, when people are afraid of it, it doesn’t help,” she said.

Bullard tells friends and acquaintances about her epilepsy on a one-on-one basis. 

“I worry about it only because I don’t know how people are going to react as a whole. It’s a delicate balance. I want people to know who I am and I want the issue to be out,” she said.

Bullard said she hopes this walk, and telling her story, will be the first step of educating people in Maine about epilepsy.

Bullard said for some people, developing a relationship with an epileptic person can be difficult, but her partner of 17 years, Pam Anderson, said she didn’t think twice about the epilepsy.

“I think the first time I saw Judy have a seizure it was scary, I didn’t know what to expect. We talked about it beforehand, but there’s not a lot you can do, just be there for the person,” Anderson said.

She said epilepsy is like any disability in that discrimination can be seen in the workplace and in social settings.

“It’s not that well known and people associate it with grand maul seizures. I think it scares people, I think that discrimination is there but for most people, the seizures are relatively well controlled,” Anderson said.

Binette hopes by the time her daughter is in high school, discrimination will have dwindled.

“It’s slowly happening, the change. You look at kids in high school and to some of them, it’s a death sentence. They can’t drive, medication makes them sleepy in class and friends might be scared of them. I want to teach her [Delia] to say, ‘You know what? I have epilepsy and if you don’t like it, oh well,’” she said.

Maine’s First Walk for Epilepsy is scheduled for May 18 at Young Elementary School, 36 Tasker Street, in Saco.

The entry fee for the two-mile walk is $30 per person or $60 per team. Participants are encouraged to fundraise for the event. To register visit www.epilepsyfoundation.org.