Understanding Epilepsy – The Third Most Common Neurological Condition
Have you ever witnessed someone experiencing a seizure? Most of us would be at a loss for what to do. Even caregiving professionals who recognize an epileptic seizure may not know whether to intervene or call 911. While 1 in 26 people will have epilepsy during their lifetime, most of us are more familiar with neurological conditions like Alzheimer's and strokes.
Then there are the stereotypes and misconceptions about epilepsy. Epilepsy is not contagious. A person with epilepsy cannot swallow their tongue. Perhaps most surprisingly, most episodes – or seizures – are not medical emergencies. Often, the most appropriate course of action is simply to monitor the situation and let the episode run its course.
Even healthcare agencies have bought into these misperceptions, with some refusing to send caregivers to the homes of individuals with epilepsy. Monica Anzelone, Director of Programs & Services at the Epilepsy Foundation of Connecticut, has heard some say they are not equipped to care for someone with epilepsy. While Monica believes they are discriminating, she understands their reluctance given the stigmas surrounding the disorder.
“When people hear epilepsy, they get concerned and fearful and feel they’re not equipped, not realizing that you don’t need to go through that much training,” Monica says. You don’t need to be a nurse or a doctor. Most episodes may look scary but last only 1-3 minutes and are not life-threatening. If you know first aid, training is relatively simple, quick (90 minutes) and can be completed in person or online.
Some people first experience epilepsy as children. Some kids grow out of it and for others, it continues into adulthood. For those who develop epilepsy as adults, it can be brought on by a traumatic brain injury, a stroke, a fall, tumors, respiratory dysfunction, or situations of unknown origins. Some may initially be diagnosed as the result of an episode while driving. Surgery offers epileptics the possibility of less frequent episodes and for some, even a cure. But most live a normal life span and can manage symptoms with medication.
Caregiver Training and Support Resources
The real worry, Monica says, is that families who are denied caregivers may feel compelled to go it alone. She believes that agencies concerned about liability and independent caregivers who fear that they may not have the training they need will feel confident once they realize how quickly and easily they can get up to speed. The Epilepsy Foundation of Connecticut offers free, 90-minute trainings which participants can complete online at their own pace, or in person. Caregivers and agencies in other states can contact the National Epilepsy Foundation for local training options.
Discover how easy it is to bring your gifts as a caregiver to people with disabilities, including epilepsy. Visit Rewarding Work to find opportunities for you to make a difference in the lives of individuals and families.