Living with Epilepsy: How Our Life Has Changed
In honor of National Epilepsy Awareness Month, The Epilepsy Foundation of Texas provided this message from one of their members, Luann, who has a 16 year old daughter Abigail with epilepsy. Luann describes how her family’s life has changed since her daughter was diagnosed.
“Due to the type of Epilepsy Abigail has, “Generalized Epilepsy with Tonic Clonic Seizures upon Awakening”, there are certain lifestyle changes we have made since her original diagnosis 26 months ago. Because Abigail’s seizures are at highest risk of occurring upon awakening, Abigail cannot take naps. Taking naps is considered a disruption in the sleep cycle so discipline with proper bed times is important in our home.
Our morning ritual consists of me waking Abigail up at the last possible minute so as to allow her as much sleep as possible. Because so many of her seizures have occurred while I was in the shower, I now wake her up AFTER I have completed my shower so as to be able to hear her should a seizure occur. If on weekends, she is up before I have showered; she must sit on the couch until I am out.
Since the first 7 months after her initial diagnosis were such a roller coaster ride, we have learned what now works for us. I keep a journal of her seizures, what was happening in her life before a seizure would occur so we could pinpoint if the breakthrough was result of menstrual cycle, not getting proper sleep, being sick, or unusual stress occurring. I also maintain a journal of ongoing questions for the next visit with neurologist.
For me as Abigail’s mother, the fear of that next seizure is never but seconds from my mind at all times. I listen for sounds constantly in our home, especially in the mornings. Our daily precautions are to adhere to the strict sleep schedule mainly. I do have more rugs throughout the house so as to cushion tonic clonic seizures to the floor. I make sure all phones are in their cradle and charged at all times so in case an emergency does arise. I stayed tuned in reading about current issues with epilepsy on the website, searching and digging for more constantly so I can better prepare my daughter for living with this disorder outside our home. Knowledge is power in dealing with this disorder. Without knowledge, the fear can be and is all consuming at times.”
For Luann, she is extremely aware that she may need to dial 9-1-1 at any moment, and although she is educated and prepared for that situation, it is still a moment of panic and fear. To have her daughter’s condition, detailed medical notes, and their home address already available to 9-1-1 the moment she calls for help can provide great peace of mind. The Epilepsy Foundation encourages all families to create their free Safety Profile at www.smart911.com for that peace of mind, knowing that 9-1-1 has their information and can help them in their moment of need.