Parents worry about their children from the moment they’re born. But for Shelley Regier and her husband Randy that worry is constant.
Their twin daughters, Emily and Ally, 19, were both diagnosed with epilepsy at a young age. Emily had her first seizure when she was 10 and, after an MRI and EEG, was told she had epilepsy. She was put on medication to try to control the seizures.
Two years later, Ally had her first seizure.
“The girls were at a friend’s house and I got a call that one of the girls had a seizure,” she said. “When I got there I was obviously thinking it was Emily, so I went over to Emily and asked how she was feeling. Ally says to me ‘no mom, I’m the one that had it.’ I was shocked.”
Since the girls are twins, Shelley had asked the doctor what the chances were Ally would have epilepsy. She was told the chances were two per cent.
“I kept thinking it’s impossible that Ally has epilepsy. I had completely put it out of my mind,” she said. ” The doctor put her on medication and she’s been fine every since.”
In fact, it’s been seven years since Ally’s had a seizure, which means she can stop taking her medication.
“The doctors have told me I’m OK, but I’m anxious about going off the medication,” she said. “I guess the medication is my safety net. I’m in school right now, I’m working and I want to get my licence. I just don’t think it’s the best time for me to do it. Having a seizure would wreck that for me.”
Ally’s taking culinary courses at St. Clair College and wants to be a chef. It’s tough as she watches her twin sister, Emily, still struggle with seizures.
“The first time she had a seizure I thought she was dying, I was so scared,” Ally said. “I think it’s the look she gets in her eyes. It’s like her eyes are empty. Even now I’m still freaked out by it. For her it’s not so much the seizures as it is where she is when she has one.”
In high school Emily was having seizures every two weeks. She now takes 18 pills a day to control them.
“In high school it was really hard and a lot of kids didn’t understand,” Emily said. “I remember they would post stuff on Facebook after I had a seizure. I don’t know if they realized I could read the stuff. I don’t think people realize how much it affects people’s lives.”
Emily can’t drive a car, go to the movies or concerts, or go to the bars downtown with her friends. Because of the medication she can’t drink, and the flashing lights in the bars could trigger a seizure. She can’t swim, take a bath or shower without someone keeping an eye on her.
Emily enrolled in the animation course at St. Clair College because she loves to draw. But the computers and light screens could cause a seizure, so she switched instead to office administration.
“A lot of times people will say ‘you don’t look like you have epilepsy,’” she said. “I’m not sure how I’m supposed to look. When I have a seizure it scares people and they don’t like how I look. My sister taped one of my seizures and when I saw it I didn’t like how it looks so I understand how they feel. It’s not something normal, it is scary.”
Shelley has finally become comfortable leaving Emily alone.
“Really it’s the unknown,” Shelley said. “You never know when she is going to have a seizure. We leave her alone more now and it’s getting easier. But I always ask her before we go. She knows now and if she’s feeling a bit off will tell me. She’s trying to lead a normal life to an extent and it’s definitely gotten better.”
The girls’ close friends know they have epilepsy, but they don’t tell many people.
“I’m pretty quiet about it,” Ally said. “I don’t want them to worry when they are around me. You can tell when people are scared or uneasy. It doesn’t make me embarrassed, but it does make me feel like a major burden.”
The impact of epilepsy can vary from person to person. There is no one picture of epilepsy. Some people who have seizures may experience more extreme emotional changes, or exhibit behaviours not considered socially acceptable. Sometimes medication and the seizures themselves affect a person’s emotional state or behaviour.
“Epilepsy impacts every person differently,” said Nikki Porter, communication liaison for the Epilepsy Support Centre. “The length, frequency and age at which a person started having seizures as well as environmental and genetic conditions can have an affect. Some people with epilepsy face many challenges such as behavioural or cognitive issues, while 70 per cent of others do not exhibit any issues.”
Accomplished runner Eric Coffey with some of his many medals. Coffey’s love of running helps him cope with his epilepsy. (NICK BRANCACCIO / The Windsor Star)
Eric Coffey, 13, looks like your typical Grade 8 student, but his father Jeff says epileptic seizures and years of living in a “medicated fog” have left him functioning at a Grade 4 level. He’s had trouble with aggression and bouts of rage brought on by the medications.
“He wants so much to be like the other kids,” Jeff says. “He’s 13 years old and wants to walk home from school like the other kids do, but it’s really hard because he’s not like the other kids.”
When Eric was six, his parents Tina and Jeff noticed he was constantly falling. At first they thought he was clumsy, then they realized it was something more. Eric was diagnosed with epilepsy and given medication to try to control the seizures. He also had to wear a helmet to protect his head.
“The very first time he had a grand mal it really scared me. I was alone at home with him,” Jeff says. “He went to the washroom and it seemed like he was in there for a long time. I finally went in to check on him and he was pinned between the wall and the toilet and his face was in the toilet bowl and he was convulsing. I grabbed him and just drove right to the hospital.”
At school he has an education assistant with him full time. The staff is aware of Eric’s epilepsy, and when he has a seizure there’s a special room for him to go and rest, rather than sending him home.
For the past year, Eric and his dad have been running in local races, which Eric loves. Running together has been therapeutic for them both. Jeff designed T-shirts to wear in races that say “Team Eric” on the front and “Epilepsy Road Runners” on the back.
“We run together and talk about everything from comic books to super heroes,” Jeff says. “It really gives us the opportunity to do something together. It gives him something to look forward to and be proud of.”
When Eric shows off his medals, he has a big smile on his face. “I just love to run. I don’t know why,” he says. “And, I really like the races.”
Eric hasn’t had a seizure in a year, but one can happen at anytime. He’s on two medications that seem to control them, but no one is sure what causes them. What his family does know is that the condition has had an effect on Eric’s relationship with his peers.
“The kids aren’t sure what epilepsy is. The kids are worried they are going to catch it so they don’t want to play with him,” says Jeff. “They don’t invite him to their birthday parties. There is such a stigma attached to epilepsy, and there’s shame. There still is discrimination and many of them are thought of as being mentally ill, and they are not. And because of this most that have epilepsy are very quiet about it.”
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