She had her first seizure at 20. She wants people with epilepsy to know they’re not alone.
Terri Pajares began having epileptic seizures while she was in college, and after exhausting several medications, had to give up driving and rely on friends and family to get around. However, a life-changing surgery several years ago helped her regain her independence and inspired her to found the nonprofit Epilepsy Awareness of America.
The organization is holding its fourth annual Epilepsy Awareness Walk at 8 a.m. on Saturday, Nov. 4 at Lafreniere Park to raise money to fund research and procedures for others living with epilepsy. Pajares, who works in the Jefferson Parish Attorney’s Office, says she “felt the drive to help other people because of how my life improved with surgery.”
Tell us about your history with epilepsy.
I was 20 years old when I had my first seizure. I was in a college class in an auditorium, and I fell to the floor. Next thing I knew I was in an ambulance, asking, “Why am I here?”
I’m relatively lucky. My seizures aren’t as bad compared to some people. Mine are called focal seizures. It’s like I’m on pause. I lose consciousness. I’ll come back, but I won’t necessarily know how I got from Point A to Point B.
What upsets me the most is the loss of memory and the loss of independence. I don’t remember my kids growing up and major accomplishments. You’re also shut off from a social life. The only time I could go somewhere was if someone was willing to take me, and you always get tired of having to ask.
What do you think people misunderstand about epilepsy?
There’s still too much stigma about having epilepsy. I think people think that epilepsy makes you lose your intelligence, so people don’t want to talk about it.
Tell us about your surgeries.
After my first seizure, I was put on medicine that helped for a while, but then the seizures came back. I jumped through all the medicines. They termed it drug-resistant epilepsy. I was getting ready to have surgery, and then Hurricane Katrina hit and everything backed up.
I finally got my first surgery in 2020 on the left temporal lobe, which is where your short-term memory exists. They took out the portion of my brain where the seizures were coming from.
The seizures then started happening on the right side of the brain, so in 2022, I had a device implanted that works like a pacemaker. A pacemaker senses the heart’s not beating and shocks against it to get the heart beating again. Mine is just the opposite: it senses the seizure coming on and shocks against it to prevent it.
How did the procedures affect your life?
After my first surgery, I wanted to help other people because it made me come alive again. I got some of my freedom back.
What can attendees expect from the Epilepsy Awareness Walk?
I started the walk to gather people around to talk and support each other and maybe find a solution beyond daily medication to make our lives better, to become more normalized.
There will be music and Dr. Piotr Olejniczak, a professor of neurology at LSU Health Sciences Center in New Orleans, will give a talk.
We will also be auctioning off a 2021 team football signed by Saints players and raffling off gift baskets and gift cards from Target, Raising Cane’s, Chick-fil-A and a necklace from Kendra Scott.
The funds raised will go toward helping people cover their insurance deductibles for surgeries, procedures and research.
Is there anything else you want people to know?
I want people living with epilepsy to know that they’re not alone.