Epilepsy Walk 2018: Supporting People With A Misunderstood Condition
A big crowd is expected to put in some miles and raise some money this Saturday during the annual Walk for Epilepsy. The event will support the local chapter of the Epilepsy Foundation of Florida. The foundation sponsors fund raising walks all over the state, and the local event will be held this Saturday, May 19 at Community Maritime Park in Pensacola. Cecily Chundrlek, an advancement and development specialist with the local chapter of the foundation says the money raised locally helps fund some medical help for their clients. "They visit neurologists, they have particular testing done, they have sleep studies done. (At the foundation) we work with neurologists in the area. We also negotiate better pricing on the testing and the doctor's office visits for our clients."
A person is diagnosed with Epilepsy if they have two of more unprovoked seizures. Those patients often spend months or years trying to find the right combination of medications to control their seizures. And for the most part, medical science still doesn’t know why. "Why did they not sieze today and they are going to seize tomorrow, or they seized two weeks ago but not three weeks ago? Why an individual seizure starts? We don't even know that!" said Dr. Timothy Lynch. He is certified by the American Board of Psychiatry and Neurology in Epilepsy and is also an Assistant Professor of Neurology at Albany Medical Center in Albany, New York. He says that when a patient is diagnosed with epilepsy, the first step is always to try medications to control the seizures. "There are many medications out there. We typically break them down right now into older generation medications [like] Dilantin, Phenobarbital, Depakote, Tegretol [among others]. [These are called older generation meds because] one, they've been around longer. But almost more importantly, they have more side effects. You have to draw blood work to check liver enzymes, they tend to make people feel more tired, sleepy, have more cognitive effects [as well as] more drug-drug interactions. And the newer medications like Keppra, Lamictal, Topamax [there are a lot] and even more coming out. And those tend to be better because they tend to have less side effects, they tend to be less sedating [and] they tend to have less drug-drug interactions."
And choosing which medication or combination of medications will work for a particular patient usually comes down to trial and error. It’s all working toward one goal. "We want no seizures, period" said Dr. Lynch. "We usually say that if someone has gone a year without seizures that they are seizure free. Even one a year is too many because, frankly, you're not going to be driving. We often look at it as what can get someone back behind the wheel of a car and driving." Laws vary by state, but in Florida someone with epilepsy must go six months without a seizure to be able to legally drive a motor vehicle.
Everyone, however, is still allowed to walk. Cecily Chundrlek says people can register for the walk as individuals, or as members of a team. The walk has raised a good amount of money for the local foundation chapter in the past. "We've raised anywhere between $25,000-$50,000 [from the walks]. This year our goal is $45,000, and we're half way there." Chundrlek says individuals and teams get sponsors and hold fund raising events on their own to support their efforts in the walk.
Besides raising money for the foundation, there will be medical providers at the event offering more information about a condition that not many people understand. "It's something that, in the community, that we need to raise more awareness, and let people know that it is not discriminatory. You can get epilepsy at any time from a baby to an adult. You can also get it from any type of head trauma. [That] can cause seizures. So we focus on educating the community about epilepsy and seizures disorders."
The fourth annual Walk the Talk for Epilepsy is happening this Saturday, May 19 at Community Maritime Park in Pensacola.