Our Strategies to Help an Adult with Epilepsy
Getting a diagnosis
Most people who are sick will go into the doctor's office, walk out with a prescription and feel better in 10 days. That doesn't happen when a seizure disorder is involved. Getting an accurate diagnosis can take several months or more when an adult has epilepsy.
It took over a year for my daughter to be accurately diagnosed. During the wait, we constantly second-guessed ourselves. We went back and forth between admitting that something was wrong and denying that there was a problem. Talking with a counselor who understands medical issues has been helpful.
Petite mal seizures
Ultimately, my daughter was diagnosed with petite mal seizures. Consciousness isn't lost but she becomes unaware of her surroundings for a few seconds to a minute. These can repeat before they stop or they can continue for a day or more
Heredity
Petite mal seizures can be hereditary. Doctors are currently deciding whether or not my husband has a milder form of the same problem. We've been told that since it is mild he won't face the same restrictions that our daughter deals with. This makes it much easier for him to deal with epilepsy as an adult.
Monitoring symptoms
My daughter's friends are quick to notice when she has symptoms. Our family is even quicker. When anyone notices that she is extremely scatterbrained, or has problems with conversations, we speak up and ask her if she is okay.
Usually this prompts her to evaluate the previous few days. She'll usually remember a forgotten dose of medicine or fess up to a late night of studying. As an adult with epilepsy, she must have adequate rest. Too little sleep lowers the seizure threshold and causes problems.
It's not the life that an adult with epilepsy wants to have. This means that at home, the TV volume needs to be kept low. At school, her roommate must be quiet so she can sleep.
Restrictions
When an adult has epilepsy the results can be devastating in other ways. The state won't allow my daughter to drive. Our town has no bus service. When she is home from graduate school she's stuck without transportation. We try taking her where she wants to go but sometimes our schedules won't mesh.
To help cope, we encourage her to build a support network by developing friendships. Even more than taking pressure off of me and my husband, it helps her learn to fit in.
Choosing a graduate school
As an undergraduate, the compact size of my daughter's school allowed her to walk where she needed to go. Her close knit group of friends helped monitor her symptoms and would walk her to student health if need be.
As an adult with epilepsy, choosing a graduate school meant applying to colleges where bus service is readily available. Her friends went to programs in other cities so she has to monitor symptoms herself. Getting to a doctor means a bus ride instead of a walk across campus.
Seeing her go to a large city where she didn't know anyone was hard. My husband and I balked when she decided to leave her service dog at home. If the dog hadn't taken to me as well as he does to her leaving him behind wouldn't be possible.
Even though my daughter is in graduate school she still has to cope as an adult with epilepsy. For me and my husband, this means accepting decisions we disagree with.
Coping
Learning to develop a network of friends paid off for her. Another young woman in the graduate school lives about 30 minutes from our home. It took them less than five minutes to meet and become friends. Knowing that they go almost everywhere together or with others is reassuring.
My daughter is better at self-monitoring but walking alone isn't recommended on a high symptom day. As an adult with epilepsy she knows that she can call the graduate school or 911 for help but she also wants to develop other coping mechanisms.
After brainstorming, she decided to carry a few dollars and a school business card. The name and number of a cab company is on the back. This way, if she's away from school and feels unwell she can call a cab. We're also considering a GPS enabled smart phone.
As caregivers of an adult with epilepsy we have to face the challenges head on. In doing so, we take power away from the disease and give dignity back to our family member.
http://www.epilepsy.com/articles/ar_1084289240
http://www.epilepsy.com/epilepsy/behavior_moods
http://www.medhelp.org/medical-information/show/897/petit-mal-seizure
Published by Gayle Crabtree
Gayle is an expert in budget and family travel. She is a trained mission team leader who has traveled extensively throughout the United States and Canada. Her road trips experiences include traveling with di... View profile
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