Editorial
Front Page - Friday, September 10, 2010
Epilepsy Foundation providing aid, education, support
David Laprad
Audrey Sullivan is the education services director at the Epilepsy Foundation of Southeast Tennessee. She’s helping to raise awareness about epilepsy and educate people in the greater Chattanooga area on seizure recognition and first aid. Mickey McCamish, executive director, is a former Navy captain and golf resort president and CEO. He spends his days speaking to the community about his experiences and helping to raise funds for the foundation.
- David Laprad
As the father of a man with epilepsy, Mickey McCamish has a lot of experience with the brain disorder. He’s endured the lack of support many epileptics and caregivers face, dealt with lifestyle changes and followed the research through the years, hoping scientists would find a cure. Although McCamish does not suffer from epilepsy, he and his wife have shouldered the burden of caregivers for almost two decades.
While unfortunate, his familiarity with epilepsy makes him an ideal advocate for epileptics and their caregivers. As executive director of the Epilepsy Foundation of Southeast Tennessee, McCamish can offer more than a caring hand; he can offer his empathy.
“Our son was 14 at the time. He was a baseball player and the captain of the junior varsity basketball team. When I received the call that he’d had a seizure, I questioned whether or not they had the right number, because I’d seen him a couple of hours earlier, and he was fine,” McCamish says.
Caused by brief interruptions in the normal electrical activity of the brain, seizures are the symptoms of epilepsy, according to literature the Epilepsy Foundation distributes. Epilepsy currently affects an estimated three million Americans, or more people than Parkinson’s, Cerebral Palsy, Multiple Sclerosis and Muscular Dystrophy combined. It can result from head injury, infection, fever, brain tumors, or other trauma that damages the brain, although for 70 percent of people with epilepsy, there’s no identifiable cause.
Moreover, people of all ages and races, and in all walks of life, can develop epilepsy.
McCamish’s son was in school when his first seizure occurred. His teacher, who hadn’t been trained how to deal with epilepsy, ran out of the classroom screaming for help. Once the McCamishes knew what they were dealing with, they were on their own, as there were no support groups in their area.
The Epilepsy Foundation remedies this situation for people with epilepsy and caregivers in Southeast Tennessee. Through financial assistance, education and support groups, the Foundation gives people with seizure disorders a chance at living normal life, and gives the people taking care of them the support they need.
While there’s no cure for epilepsy, treatment for the symptoms can include special diets, drugs, surgery, or a combination of these options. However, the prospect of controlling seizures with medication is daunting, as the drugs are costly, and some patients must take their medication up to four times a day. With this in mind, the Epilepsy Foundation has assistance programs in place that can pay for the drugs a person with epilepsy needs.
“These are tough economic times, and the last thing we want is for someone to experience a seizure as a result of not taking his or her medication. So we will step in and provide some financial assistance to help purchase the necessary medication,” McCamish says.
The Epilepsy Foundation also provides education in an attempt to dispel the myths about the disorder and provide practical information on what to do should anyone ever be in a position to help someone who’s having a seizure.
“My son’s teacher was frightened because she didn’t know what to do. We want to arm people with information so they’ll be able to respond appropriately,” McCamish says.
Education for school nurses and teachers help school personnel detect and deal with epilepsy in the classroom. Other programs help students understand epilepsy as a controllable, non-contagious medical condition.
“You can imagine the mocking that occurs. It hurt our son, who was used to being a star athlete. We ended up putting him in a boarding school because of the lack of education,” McCamish says.
The Epilepsy Foundation also provides training for law enforcement and emergency re-sponse teams about epilepsy and seizure management. Educational videos, speakers and presentations are all available to organizations and business that would like to train their staff.
“A seizure can happen anywhere, at any time, so it’s good to be prepared,” McCamish says.
Finally, the Epilepsy Foun-dation hosts monthly support groups that allow people with epilepsy and their caregivers to come together to talk about their experiences. The Foundation also brings in experts to discuss a variety of topics. Past guest speakers include neurologists, a lady that trains dogs to recognize when a seizure is about to occur, a lawyer who discussed the legal ramifications of the disorder and a social security disability specialist. To put it simply, McCamish says, “There’s a lot to learn.”
Average attendance at the support groups is 30. That’s a small percentage of the approximately 15,000 people in South-east Tennessee with epilepsy.
To secure the money for its services, the Epilepsy Foundation engages in a number of fundraising efforts, including the Chocolate Lovers’ Fling, held each April. The Foundation also applies for grants, obtains help from United Way and receives a portion of the money guests at Sticky Fingers spend the first Monday of each quarter. From the Tennessee Crush football team, to BI-LO grocery stores, to the Chattanooga Classic golf tournament, a number of businesses, organizations and events are rising to the occasion.
With epilepsy costing $15.5 billion a year, their timing could not be better, McCamish says.
Not only that, but “interesting things” are taking place in the search for a cure, McCamish says. For the first time, scientists believe epilepsy might have a genetic link, and are conducting studies aimed at testing the theory.
Even without a cure, Mc-Camish says epileptics such as his son can lead a normal life.
“He’s a welder, and he has a girlfriend who’s aware of his medical condition. He also goes swimming, although not alone, even though he’s been seizure-free for a couple of years,” he says.
There’s always a chance, even when all of the precautions are taken, that a seizure could strike. That’s why the Epilepsy Foundation hopes to provide support for people with epilepsy and their caregivers well into the future.
“Whenever I see my son’s name come up on my cell phone, I become concerned,” McCamish says.
To learn more, visit www.epilepsy-setn.org.
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