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September 23, 2018

Epilepsy Resources Available Locally for Kids and Adults


A legislative column by Assemblyman Will Barclay

Epilepsy affects one out of 100 Americans. It is a medical condition that produces seizures, which affect a variety of mental and physical functions. When a person has two or more unprovoked seizures, they are considered to have epilepsy.

In a recent New York Times article, the chairman of the Epilepsy Foundation, Dr. Brien Smith, chief of neurology at Spectrum Health in Michigan explained that his epilepsy started at a young age. In the article he states “I remember waking up as a young child with weird dreams — a kaleidoscope view of the world. In my midteens I had these feelings of kind of a brain warp that would pass. Finally as a junior in high school, I had a seizure getting out of the car in the high school parking lot.” It was later determined that he had a brain tumor, which never showed up on early scans, but was likely the cause of his seizures. Many other conditions can cause seizures and all seizures do not look alike. In the same article, he recalls what it was like to have a seizure in front of his fellow medical students and how most reacted: frozen with fear.

A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain, according to the Epilepsy Foundation’s website. One in 10 adults will have a seizure sometime during their life. Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.

Local and national advocacy groups are banding together to change the stigma that is attached, better educate the public, and reach out to healthcare providers to educate them on the different types of seizures and possible causes. This month Syracuse hosted its first ever walk to raise awareness about epilepsy at Onondaga Lake Parkway. Local resources are available to those who experience seizures. The Epilepsy Foundation of Rochester, Syracuse and Binghamton has many resources available. They may be reached at (585) 442-4430 or visit www.epilepsy-uny.org. NY Employment Solutions also provides individualized employment solutions for individuals with epilepsy, traumatic brain injuries, and other neurological impairments. The program director in Syracuse can be contacted at (877) 214-7715 or for more information, visit www.nyemploymentsolutions.org.

Camp EAGR, which stands for Epilepsy Association of Greater Rochester, is a week-long residential camp for boys and girls, ages 8 to 17 who have epilepsy, regardless of seizure control, ambulatory and personal care needs. Camp EAGR gives kids a chance to build self-confidence, self-esteem, independence and social skills. I was able to watch a video of kids climbing rock walls, swimming and horseback riding at Camp EAGR. They sure looked like they were having fun together.

This is a great camp for kids with epilepsy. It allows campers to connect with other kids who have had similar experiences. This may be the first time that children have met other kids with epilepsy. The week-long stay is $400 and includes food, lodging and access to all camp facilities. To sign up or to find out more information, call Michael Radell at (585) 442-4430 x2702 or write to him at [email protected] The deadline to register is Aug. 1 and requires a non-refundable deposit of $25.

If you have any questions or comments on this or any other state issue, or if you would like to be added to my mailing list or receive my newsletter, please contact my office. My office can be reached by mail at 200 North Second Street, Fulton, New York 13069, by e-mail at [email protected] or by calling (315) 598-5185. You may also friend me, Assemblyman Barclay, on Facebook.

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