Epilepsy: Grand Forks man discusses challenges, triumphs of this ‘hidden’ disease

It’s been nearly 40 years, but Linda Grahek remembers the day when something “was just not right” with her infant son, John.

“He was just laying there, not crawling around, not searching things out like an 8-month-old would,” she said.

“When I picked him up, his body was just hot,” she said. Linda and her mother put John in cool water. She later tried to feed him “and his eyes rolled back.”

John was rushed to the hospital where medical staff placed him in a tub of ice and water to lower his temperature. He went into convulsions which lasted 13 hours. After ruling out meningitis, the doctor prescribed phenobarbital, a medication used to control convulsions.

To this day, Linda is unsure whether John’s condition was caused by high fever, a case of measles or having been delivered with forceps, she said. There’s no history of epilepsy in the family.

Cause unknown

Seizures can happen to anyone at any time and in 70 percent of the cases, the cause is unknown. Potential causes include infections and maternal injury, stroke, brain malformation and head trauma, according to the Epilepsy Foundation of Minnesota.

There are 60,000 people with epilepsy in North Dakota and Minnesota. They are among 2.2 million Americans who have the disease. While epilepsy is most often diagnosed either in childhood or after age 65, it can occur at any age.

The disease can be treated through medication, surgery and special diet. Also vagus nerve stimulation — an implanted pacemaker-like device that regularly delivers electrical stimulation to the brain — can control seizures.

For those who take medication, the trick is finding the most effective prescription drug or “medication cocktail” for the patient, Linda said.

Scar tissue

John attributes epilepsy to scar tissue on the left side of his brain, he said. Because the left hemisphere controls the right side of the body, when seizures occur, he falls to his weakened right side, Linda said.

Coming out of the seizure, John “will look at you, smile when he sees you’re talking to him, but can’t speak” right away.

John and his wife, Kim, raise his son, Walter, 12, from a previous relationship.

Early on, while dating, Kim was at John’s apartment when he had a seizure.

“It scared her,” he said. “My son said, ‘oh, that’s just my dad.’ He knows what to do.”

John takes four prescription medications and can take another drug, diazepam, if he feels a seizure coming on. His seizures each last five to 10 minutes, he said, and he remembers nothing about the incident afterward.

At age 14, John was examined by doctors at Gillette Children’s Hospital in St. Paul, who suggested he return one year later to undergo surgery to remove the scar tissue. He and his family opted to treat his condition with medication.

“Unless they can guarantee I won’t have (seizures), I’m not going to have the procedure,” John said.

Combating ignorance

John has “adapted” to the disease, but it hasn’t been easy.

As a student at Emerado, N.D., elementary school, he wore a portable electroencephalograph (EEG) device which captured brainwave information doctors used for diagnosis and treatment. Despite his appearance, John was never teased or harassed, he said. “Kids are not as ignorant in grade school.”

He didn’t encounter that same level of understanding in high school, where he endured “severe bullying,” Linda said.

“It was tough because I was different, I did not fit in,” he said. At times, John was also stung by family members who were “embarrassed” by his seizures or a doctor who told Linda he was having seizures “to attract attention,” he said.

His ability to cope is anchored in a love for fishing.

“I knew what I wanted to be,” he said. “I wanted to be a fisherman when I grew up. I kept my focus on that.”

He spent hours watching fishing shows on TV. His father often took him on fishing trips.

Jobs and insurance

“I go through struggles on a daily basis,” John said, not the least of which are landing and keeping a job and securing health insurance.

He does not have a drivers’ license — a question that appears on job applications — although he could if he met certain conditions, he said. But transportation is not a problem for him these days. He walks to work, rides with family members or uses Dial-a-Ride.

He is frustrated though by the drivers-license question when the ability to drive is not a job requirement, but it’s asked as a way to facilitate a background search, he said.

Although it’s illegal to ask about epilepsy on a job application, John is haunted by how the disease can torpedo his employment ambitions.

At a prospective workplace, if an employee knows about John’s seizure disorder and informs the employer, he said, “I don’t have a chance to show the company what I have to offer.”

He says epilepsy is not something he can completely control. “Just because people have epilepsy, it doesn’t mean we cannot do our job.”

True passion

Through ups and downs his true passion, fishing, has remained intact.

As a young adult, he got involved in the professional fishing circuit and competed as an amateur angler for many years.

However, during a fishing tournament in 2009 he had a seizure, fell out of the boat and nearly drowned.

Tournament officials told him in a letter from their attorney that he must step down from that particular competition, but John has no plans to give up fishing competitively. He intends to fish in three events beginning in April.

For his last birthday, Kim gave him a special lifejacket that’s designed to inflate if he falls into the water.

John and Linda would like to combat the stigma and dispel the fear and misconceptions that surround epilepsy.

Such fear can be traced to earlier times when some believed that people with epilepsy were “crazy” and should be institutionalized.

The disease can be “very scary, but you’re not alone,” Linda said. “Don’t be afraid to talk about it. It’s just a health condition like diabetes or high blood pressure.”

“Epilepsy is hidden,” John said. “You make it visible by talking about it.”

“I do not allow my seizure disorder to stop me from doing anything… Anybody can do anything as long as they put their mind to it.”

Call Knudson at (701) 780-1107; (800) 477-6572, ext. 1107; or send e-mail to pknudson@gfherald.com.

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