Ann Helbe, a retired nurse and ophthalmic technician, lives with epilepsy and is a member of the Epilepsy Foundation of Delaware’s board of directors.
November brings crisper air, beautiful foliage, falling leaves crunching underfoot and fresh scents.
It is also the time for National Epilepsy Awareness Month.
So, just what is epilepsy? Epilepsy has been defined as irregular electrical activity in the brain, causing seizures. It is the fourth most common brain condition and affects people of all ages. One out of every 26 people worldwide has epilepsy.
Epilepsy is a seizure disorder diagnosed after two seizures, not caused by any other medical condition.
There are various types of seizures, and each presents differently. Most people identify epilepsy with a tonic-clonic (formerly grand mal) seizure because there are visual effects of the seizure that can be seen by people who witness them. However, there are many types of seizures, depending on where the irregular electrical activity begins in the brain. These range from a brief loss of attention (absence seizure) to types involving muscle activity.
Types of seizures
What can be done for epilepsy?
First, a patient’s history is of utmost importance. A neurologist will order an electroencephalograph (EEG) if it appears that the patient is having seizure activity. An EEG detects the intensity of electrical activity in different areas of the brain and records them, which helps the doctor know what treatment is needed. Different areas of the brain control different functions of the body, so it’s important for the doctor to know the specific location of the brain being affected.
Other tests might be done after the initial diagnosis — for 3D images, to view differences in tissue density or to watch for chemical reactions in the brain.
Once the diagnosis has been established, the next step is usually medication. There might be several trial-and-error medications. Some of the side effects are so unpleasant.
There is a myriad of medications available now.
There are also surgeries for epilepsy and vagus nerve stimulators. Surgeries are not done without thorough monitoring in an epilepsy monitoring unit.
The Epilepsy Foundation of Delaware has helped so many people with epilepsy and their families. This disease doesn’t just affect the patient but the caregiver and his or her siblings, too.
The newly diagnosed patient has so many questions. For the young, they can include: Am I going to have any friends? Will the kids at school laugh at me if I have a seizure? Can I play sports? Will I ever be able to drive? How am I going to get good grades, when I fall asleep due to the medicine I’m taking?
For an older newly diagnosed patient or one with uncontrolled seizures, there are many of the same concerns: Am I ever going to meet someone? How will I hold down a job? Will I be able to drive or have children or have friends who aren’t afraid of my seizures? If I can’t drive, how will I get to work and how will I date? If the medications make me groggy, will I be able to stay awake at work?
What some people have never even thought of is that these are honest concerns and worries that need to be dealt with or else the most common mental problem with epilepsy happens: depression and anxiety.
Let me share a little bit of my own struggles with epilepsy. Ever since I was a young girl, I have had episodes that we first didn’t realize were seizures. It started with blinking my eyes uncontrollably, then spacing out in grade school, which caused the teacher to call my mother to school to tell her I was daydreaming in class. I didn’t have my first tonic-clonic seizure until high school. After the diagnosis was reached, I was put on a medication that made me have a rash all over my body, and the school nurse sent me home with, “most likely, German measles.” The same thing happened the next day.
I remember having a grand mal seizure in math class, and the teacher ran from the room. I didn’t know it at the time because I was unconscious. My classmates told me. However, when the realization hit me later that night and the next day, I was so embarrassed, ashamed and angry that an adult would leave me like that. The teacher came into class the following day and said, “You know, I think you really should see a doctor.”
When I was growing up, there was no Americans With Disabilities Act (ADA). There were only a few medications to treat epilepsy. There were no support groups or programs to learn more about it.
Due to Mom’s instilling deep faith in us, I’ve been able to jump every hurdle. Have doors been closed to me? Absolutely! Have I experienced negative effects of medications? Most definitely! Have I been able to drive? Never!
However, I have been so fortunate to do many things in my lifetime. I am married and have children and grandchildren. I have held down many wonderful positions and had a career as a nurse and an ophthalmic technician.
We were fortunate that there was always public transportation near us and, if not the Red Arrow trolley or the train, there were buses.
At this stage of my life, volunteering is important to me, and volunteering with the Epilepsy Foundation of Delaware is one of my favorite ways.
Today, there are so many opportunities to learn more about epilepsy.
The EFDE has provided Meet & Greet Support Groups, has an annual conference and offers first aid training for seizures to anyone who is interested. It also has three programs that teach about how to take care of epilepsy and avoid depression and anxiety, at no cost to a person with epilepsy and with no need to drive since they’re online.
Today, there are so many various medications to treat epilepsy.
There are surgeries and the vagus nerve stimulator.
The ADA helps students and people in the workforce have their needs met.
And yet, with all the information available today, there still seems to be a stigma associated with epilepsy.
The Epilepsy Foundation of Delaware is here to help get answers to questions for families.
We need more teaching!
And we need more people who aren’t afraid to say, “I have epilepsy, and I will never let it own me.” These people are our greatest advocates and share their knowledge with anyone who is interested.
Reader reactions, pro or con, are welcomed at civiltalk@iniusa.org.
