GRAND RAPIDS, Mich. — In photos, Robin Boback acted happy, but says for years, she lived in fear.
“It scared the living heck out of me,” said Boback, a retired educator who resides in Port Huron.
November marks National Epilepsy Awareness Month. The brain disorder impacts 1 in 26 people, including Boback, who experienced her first seizure at age 51.
“I got out of the shower, and just plopped on the floor in my bedroom,” said Boback. “My husband heard me and he came upstairs. He thought I was kidding around because I was flopping around. He put me over and my face was purple, my tongue was hanging out and he said, ‘Oh, my God call 911.’”
Doctors prescribed Boback medication, but she still struggled with seizures on a daily basis.
“There were so many that I never counted,” said Boback. “I didn't want to.”
The frequency of seizures changed within hours though in 2019, when Boback underwent surgery at Corewell Health West in Grand Rapids.
“I was like, ‘Wow’”, said Boback. “It was so unusual not to be confused, or my head turn into the right, or… to have control of my mind. That's what was great.”
Boback explains a team at Corewell Health localized her seizures and implanted a Responsive Neurostimulation (RNS) device. She happened to be the third person in the world to undergo the procedure in the back right part of the brain.
Dr. David Burdette, an epileptologist at Corewell Health and Boback’s doctor, says an RNS device monitors brain waves then gives small pulses when it detects seizure activity. People cannot feel the simulation and it does not cause any pain or unusual feelings.
“It allows her brain to reintegrate it and to function for Robin to be Robin,” said Burdette.
According to Burdette about one-third of people with epilepsy do not respond to traditional medicines. He notes those with it experience different types of seizures that can occur in a pattern or by chance.
Epilepsy’s causes vary too from genetics to brain trauma, although roughly 40 percent of people do not get a reason why for their diagnosis.
The National Epilepsy Foundationrecommends the following steps if someone experiences a seizure:
- Stay with the person until the seizure is over.
- Pay attention to how long it lasts.
- Stay calm. Most seizures only last a few minutes.
- Prevent injury by moving nearby objects out of the way.
- Keep onlookers away.
- Don’t hold the person down or put anything in their mouth like water, pills, or food.
- Make sure their breathing is okay.
“The obvious impact is seizures and the the difficulties that accrue from that, so difficulty maintaining or gaining gainful employment, injury associated with seizures,” said Burdette. “Additionally, it can have effects on mood, anxiety, [and] depression issues.”
Burdette wants to see more research and better treatments into epilepsy.
Boback does too. At 69 years old, she now lives seizure-free and encourages people with epilepsy to advocate for themselves.
“It gives you your life back,” said Boback. “It’s the best thing ever.”
