Austin “DJ” Brooks was never one to sit still. He loved to be active, even seeking out extreme activities like riding dirt bikes and racing stock cars. The 24-year-old Oxford man was an epileptic, but it was rare for him to have a grand mal seizure, often marked by a loss of consciousness and violent muscle contractions.
Given the rarity of his seizures, Brooks likely felt there was no reason to keep his epilepsy from letting him live an active life, and many experts probably would have agreed with him. But in late June, Brooks, who was reportedly reeling in a bass while fishing on Swan Lake in Oxford with his girlfriend, had a seizure, lost control of his body and fell out of the canoe he was in and drowned.The tragedy raises the question: How does one pursue an active life with epilepsy while staying safe?
It can be tricky, but many people do it, said Allison Gamber, program coordinator for the Epilepsy Foundation of Connecticut, a state affiliate of the national Epilepsy Foundation.
“It’s just about taking the necessary precautions,” she said.
In Brooks’ case, his sister, April, who lives in Oxford, said there were some actions that could have saved her brother’s life.
She said while it’s common for those fishing on Swan Lake not to wear life jackets, and it isn’t required, she said it “might have made a difference.”
April Brooks said if she were to give any advice to people with epilepsy who want to lead active lives, it’s that they have to pay attention to their bodies. Often, she said, someone with epilepsy will get a sense when a seizure is coming on. Sadly, she said, it seems that her brother did have such a premonition before his accident. “His girlfriend said he wasn’t feeling well and wanted to get off the water,” April Brooks said. “That’s when he got the bite (from the fish). He went to reel it in, and that’s when he had the seizure.”
According to the Epilepsy Foundation of Connecticut, about 60,000 people in the state have epilepsy. The CDC reports that about 2 million people in the country have epilepsy and about 140,000 Americans develop the condition each year.
Epilepsy is a neurological condition that causes recurrent seizures. Though epilepsy can’t be cured, it can be often controlled through medication, lifestyle adjustments such as getting enough sleep, and, in some cases, surgery.
Brooks reportedly had a grand mal seizure before his accident, which his sister said was a rarity.
“He’d only ever had a couple grand mal seizures,” his sister said. “They were mostly just twitches.”
She said her brother’s epilepsy didn’t pose much of an obstacle to doing what he loved. He had been going out on the water since he was 3 years old and racing stock cars since his teens.
In most cases, Gamber said, epilepsy shouldn’t be an impediment to an active life. Some epileptics participate in activities that even those without a medical condition might consider risky, such as rock climbing and scuba diving.
“It’s amazing what some of our folks do,” said Gamber.
Ken Quick, of North Haven, is a perfect example. Quick is vice president of the Connecticut Epilepsy Advocate, which raises awareness about the condition. He’s also a surfer, bike rider, rock climber and all-around athlete.
“I try to live my life as normally as possible,” said Quick, 40, who was diagnosed with epilepsy at 12 years old.
He said his condition is well-controlled and his seizures are infrequent, but he does worry that he could have a seizure while surfing or engaging in another activity. So he plans accordingly. Quick said he always alerts everyone accompanying him on his adventures about his epilepsy. He also tries to take good care of himself, eating well and getting enough sleep.
Quick said staying safe is important, but he doesn’t want to be afraid to live his life. “People should take appropriate precautions, but they shouldn’t be afraid of trying new things,” he said. “Life is short.”
Dr. Lori J. Cretella, a neurologist at the Hospital of Saint Raphael in New Haven, said epileptics can lead adventurous lives.
However, even those whose seizures are well-controlled need to be careful. “What I usually tell my patients is that the most important thing is for them to take their medicine,” Cretella said.
She also advises that those with the condition don’t venture off on a rock-climbing expedition or other adventure unaccompanied. “Don’t swim alone,” Cretella said. “Avoid heights alone. Wear a helmet (for activities like climbing or biking).”
If a patient’s seizures aren’t well-controlled, Cretella said, then they shouldn’t engage in activities like swimming, boat or sports. In fact, even everyday activities — like driving — are out of the question.
Robert A. Fiore, president and founder of the Connecticut Epilepsy Advocate, said those with epilepsy need to be especially attuned to their body’s cues and avoid things that could trigger a seizure. People with epilepsy need to be especially mindful of things like getting enough sleep and getting regular meals because neglecting these things can trigger seizures, Fiore said.
“A person living with epilepsy needs to follow strict criteria,” he said. “They need sleep. They can’t skip meals. They need to do everything they can to keep stress down.”
Dr. Srinath Kadimi, a neurologist at St. Vincent’s Medical Center in Bridgeport, said avoiding alcohol is also important, as is staying attuned to clues, known as auras, that a seizure may be coming. The auras can be a certain smell (Fiore said some people smell chlorine) to a feeling of anxiety or impending calamity.
Courtney Benedetto, a physical therapist with Griffin Hospital in Derby who was diagnosed with epilepsy, works with a lot of people with epilepsy who have fallen or otherwise injured themselves while having a seizure.
Like Quick, Brooks and many others with epilepsy, Benedetto loves the outdoors and her sport of choice is riding personal watercraft (better known by its brand name, the Jet Ski). But, she said, she’s sensitive to the messages she gets from her body.
“If I wake up with a headache or if I just don’t feel right, I don’t get on the Jet Ski that day,” she said.