Gillian Charpentier has a seizure almost every day. Now 53, and having lived with epilepsy since she was two years old, she has become accustomed to people ignoring her during an episode—or even worse.
“Many times, people don’t help,” Charpentier says in a phone interview. “They’ll go the other direction. I was in Safeway just a week ago. I had my coffee mug in my hand and I was holding onto that for dear life [during a seizure]. One woman came over, and I could hear her say, ‘Do you want a glass of water?’
“As soon as I was able to say no, she laughed at me and never came back.
“People need to be educated in Vancouver,” she adds. “Nobody knows what to do when someone has a seizure.”
Charpentier, who lives and works in Vancouver, is one of 40,000 British Columbians with epilepsy, a neurological condition in which abnormal bursts of electrical activity in the brain can result in a range of different seizures.
There’s no cure, but treatments, which include medication, surgery, vagus-nerve stimulation, and, in children, a ketogenic diet (which is high in fat and low in carbohydrates), are aimed at controlling those seizures.
To help someone having a seizure, you need to know what a seizure looks like. That’s where things can get confusing, because there are more than 20 different types.
The ones most people are familiar with are called tonic-clonic, or grand mal. These usually last no longer than three minutes, but they involve an abrupt loss of consciousness, jerking, stiffening of the body, falling, and possibly shallow breathing or drooling.
“People would see shaking like crazy,” Charpentier explains. “You know when you’re freezing cold? That happens, but it’s a lot more vigorous than that. It’s like strobe lights or a thunderstorm going off in your head. It’s very scary because there’s nothing you can do in that moment.”
“Absence”, or petit mal, seizures usually last between two and 15 seconds and are characterized by a blank stare, loss of awareness, pause in activity, and possible eyelid fluttering.
So-called complex partial seizures feature repetitive, purposeless actions such as hand-wringing, nonsensical speech, wandering, or lip-smacking.
Simple partial seizures may include psychic symptoms such as déjà vu, hallucinations, or feelings of fear.
A person having a seizure doesn’t necessarily fall down. Charpentier, who at one time had up to 100 seizures a day, has had many standing up.
“It’s like my feet are glued to the floor,” she says. “You can’t move.”
Instead of ignoring someone who’s having a seizure, talk to them. “Tell a joke or tell a story, anything,” Charpentier says. “The sound of their voices is calming.”
Don’t restrain someone having a seizure, but if they’re standing you can offer physical support so they don’t fall.
Protect them from injury by moving objects out of their way, cushioning their head, and loosening anything tight around their neck. If they’re on the ground, gently turn them on their side as soon as possible. Stay with them until they regain consciousness.
A crucial step is to time seizures. If they last five minutes or longer, the person needs immediate medical attention.
Charpentier has found ways to cope. She often walks on grass instead of cement in case she falls during a shaking episode and hits her head on the ground.
She also has a seizure-alert dog.
The canines, trained by the Lions Foundation of Canada, are capable of barking for help in the event of a seizure, and although there’s no scientific evidence to prove how or even whether they can sense an event in advance, they give their handlers a sense of confidence.
(According to the B.C. Epilepsy Society, some individuals have claimed that they can train dogs to recognize and respond to seizures, but without official recognition, these dogs don’t get an official service-dog vest or the right to access places that service dogs have.)
Charpentier’s dog, Curly, has shown a knack for warning her when a seizure is about to strike.
“She can tell me an hour ahead of time,” Charpentier says. “She will do her barking, and then I might be alright for a bit, but generally, boom. That’s it. I go into it. It is incredible.”
Like seeing-eye dogs for the visually impaired, seizure-response dogs aren’t to be petted, fed, or played with by others when on the job. And when a seizure-response dog barks, the message is this: offer or find assistance.
“When the dog barks, don’t run the other direction,” Charpentier says. “Come to us. He is not barking to protect me [and keep people away], he’s saying ‘Come here. I need help.’ What he is is my voice.”
Curly has also given Charpentier a sense of assurance.
“I used to be scared to go out,” she says. “Now I’m working and I’m in a choir. I don’t have to worry because she’s right there.”