By Annette M. Boyle
PROVIDENCE, RI—For many veterans, the onset of epilepsy is terrifying, and a confirmed diagnosis does little to provide relief. The VA aims to reduce the fear associated with seizures and encourage more veterans to seek help with the “Veterans and Epilepsy: Basic Training” series of videos.
“There is a culture of stoicism in the military, which prevents veterans with epilepsy from reaching out to get more information about their epilepsy. Hopefully these videos will show veterans and all individuals living with epilepsy they are not alone,” explained Stephanie Chen, epilepsy nurse practitioner with the San Francisco VAMC.
“The VA Epilepsy Centers of Excellence have a mission of improving the health and well-being of veteran patients with epilepsy and other seizure disorders through the integration of clinical care, research, and education,” Paul A. Rutecki, MD, national director, Epilepsy Centers of Excellence, William S. Middleton Memorial Veterans Hospital, told U.S. Medicine. “The Basic Training videos were produced to help educate patients and their care givers as well as de-stigmatizing epilepsy. We wanted veterans with epilepsy to give their personal experience with epilepsy and how they have dealt with issues that relate to the condition. Also, the goals are to help patients and caregivers better self-manage epilepsy and its co-morbidities”
The videos directly address the challenges veterans with epilepsy face, but they also provide hope by showing how patients who choose treatment can live productive and successful lives.
- The first video, released in October 2015, follows an Army Ranger, Matthew, as he and his wife wrestle with the sudden onset of nighttime seizures and come to terms with an epilepsy diagnosis. The segment presents the questions asked to get a good description of a seizure and imaging and other tests commonly used to determine whether a veteran has epilepsy rather than syncope, sleep problems, migraine headaches or other issues. It also reviews when an epilepsy monitoring unit might be used. In the video, Matthew candidly discusses how frightening it was to find out he had epilepsy and his concerns about discrimination arising from the diagnosis.
- Another video in the series describes the psychosocial issues associated with epilepsy. It features a veteran, Luke, who suffered a closed head injury as a paratrooper at Fort Bragg. During his grand mal seizures, he has been restrained by the police, robbed, had four bikes stolen and had several accidents of increasing severity before he stopped driving. For individuals like Luke, epilepsy reduces their ability to travel, hold jobs, pursue hobbies, see friends and can often lead to isolation, loss of independence, loss of self-worth, stigmatization, anxiety and depression. The fear of when the next seizure would be was “worse than the seizures themselves,” he said, and the anxiety crippled him emotionally for years. With therapy, though, he is now volunteering and seeking other ways to “push back” against his epilepsy.