By Rick Garcia
One cold January, Debra Nelson decided to drop in for a quick visit to her only son. Using her key to enter his apartment, the place was eerily silent. She called out for him with no response. She approached the bathroom and found him unconscious, lying face down on the floor. She called 911 but by the time paramedics arrived, he was already dead.
Lloyd “Jay” James Nelson, died of a seizure at age 25. His story goes deeper than dying as a result of epilepsy. Jay began experiencing grand mal seizures five years earlier, when the electrical activity in his brain began to change the vibrant 20-year-old.
Jay’s doctor prescribed Dilantin to control his seizures. Although he experienced an occasional seizure, taking Dilantin improved his quality of life. The prescription, however, was expensive. When Jay lost his job, he lost his medical benefits and paid out-of pocket on his prescriptions. His family helped out in order for Jay to maintain a regular medication regimen. He eventually applied for Medicaid, which assisted him with prescription costs. However, Medicaid mandated Jay use a particular pharmacy and would not approve payment if he decided to go elsewhere.
A few days prior to his fate, Debra drove Jay to the new pharmacy to have his prescription filled. By this point, the Dilantin was working well and Jay had been seizure-free for more than seven months. The pharmacist provided new medication, but Jay realized the pills looked different from the Dilantin he had been taking. He brought it to the pharmacist’s attention, but was told that it was a generic version of an anti-seizure medication and that there was no cause for concern. Jay took the medication as directed and died 48 hours later. This tragedy adds to the complexity of epilepsy.
When most people think of epilepsy, seizures come to mind. Seizures are the result of electrical discharges in the brain, almost like an electrical storm in the brain. Seizures can look different, depending on what part of the brain is affected. There are many different types of seizures and it’s expected that 70 percent of people who have epilepsy will become seizure free. But for many, epilepsy can mean disruptions at work, school, driving, and day to day activities.
Treatment for epilepsy has usually centered on control of seizures. Today, there are a number of medications as well as devices and the possibility of surgery for those living with epilepsy. But what’s surprising is the overall effect that epilepsy has on a person’s health and wellness.
For children with epilepsy, being labeled as a “freak” among peers can be devastating when they experience “petite mals” or “grand mal” seizures. Visible injuries to the head and face or limbs when falling are common results after the incident. The feeling of embarrassment and humiliation can result in depression, low confidence and self-esteem.
In an Epilepsy website blog, one teen with epilepsy offered some good advice: “Don’t stress about the thing after it’s over. Don’t worry about it if you just had major convulsions in public, because that’s not important. What is important is the fact that you’re not going to get rid of epilepsy anytime soon, so make the best of it. Forget it’s there. You’ll find you’re a lot happier if you’re not constantly living in fear. Sure, seizures hurt. When they’re done, they’re done, and if you know that there’s a good chance that it’ll happen again and at least you’ll be expecting it.”
According to the Foundation last needs assessment based on the U.S. Census and the county’s population, Epilepsy occurs in between one to two percent of the population.
Recently, policy makers and advocates have been concerned that people with chronic diseases or disabilities are not encouraged to develop good health habits. As a result, the Epilepsy Foundation of Michigan has offered conferences throughout the state on wellness and Epilepsy. Discussion topics include current treatments, complementary treatments, and stress management, adopting healthy behaviors including exercise, healthy eating, and sleep.
To learn more visit the Foundation’s website at www.epilepsymichigan.org or call 1-800-377-6226.
Rick Garcia, a nonprofit executive, a civil rights advocate, blogger and a contributing writer for The New Citizens Press can be reached at rrgarcianrg@gmail.com
This was printed in the July 28, 2013 – August 10, 2013 Edition
