Living with Epilepsy

Dan Dougherty

Speaking Out

For most of his 42 years Dan Dougherty has been living with epilepsy, while residing with his parents, Neil and Bernadette, in their home outside Philadelphia. As Dan puts it, he "seized the world" when he was born. He was in fetal distress the first four days of his life as he suffered frequent convulsions.

After that, he had a pretty normal childhood--until he was 10 years old. That's when, while out sledding with his dad, he had a seizure at the bottom of a hill. He didn't convulse; instead he began vomiting and felt dizzy. When he had several more episodes of disorientation and nausea, Dan's parents took him to see a pediatric neurologist. The doctor diagnosed him with epilepsy.

The disease has had a profound effect on Dan and his family, but he has worked hard to shape a more fulfilling life, one that pushes him beyond the physical limitations of his condition. Despite an occasional stutter, he has embraced public speaking and, through the group Toastmasters, has learned how to talk with conviction to a roomful of strangers. It has enabled him to work with the regional chapter of the Epilepsy Foundation and speak about his disease. And it has enabled him to find his voice.

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Abnormal Brain Signals

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Epilepsy is a condition with a wide range of seizure types that vary from person to person. A seizure is a sudden surge of electrical activity in the brain that usually affects how a person appears or acts for a short period of time. Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well. The seizures may be related to a brain injury or a family history, but often the cause is unknown.
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A Family's History

Dan's Dad, Neil, as well as Neil's mother, also have lived with epileptic seizures. Neil was born with hydrocephalus and then when he was about four years old, he suddenly went into a state of continuous convulsions. From that time until he was about to start first grade, he continued to have seizures. Then, all of a sudden, first grade started and the seizures stopped. During the eighth grade he started having petit mal seizures. He had those seizures from the time he was 13 years old until he got married at age 27. Unlike Dan, Neil's seizures have ceased over time. The last seizure he had was in 1984.

A Big Challenge

Over the years, medication has helped reduce Dan's symptoms. But because of the area of the brain affected by his seizures, neither medication nor surgery can eradicate them. So Dan has had to live under the care of his parents, a situation that has presented its share of challenges.
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A Complex Condition

Treatment of epilepsy can be very complex. It needs to be individualized because so many factors have to be considered, including the types of seizures. For most people with epilepsy, oral medication is usually the first line of treatment, and for a good percentage of the population, it is effective. Some patients do have a seizure disorder that makes them resistant to drugs, but they often can be treated with surgery or electronic stimulation.

The Implant Option

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Since Dan's epilepsy is inoperable and medications don't fully control his seizures, he is banking on new technology to help him. Recently, the FDA approved a treatment called Responsive Neurostimulation (RNS) in which a neurostimulator is implanted in a person's skull. It monitors brain wave activity and when it detects a seizure, it produces a small "zap" or electrical stimulation to stop it. Because the medications he takes have had side effects that affect him emotionally, Dan augments his treatment with therapy and antidepressants.
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Unpredictable Seizures

Dan has experienced several types of seizures. When he was first diagnosed, and for some time after, he had simple partial seizures. This is when the person is fully awake, but becomes detached and disoriented. They generally only last a few minutes and the person usually can go back to what they were doing before the seizure started. Then, for a period of about 10 years, Dan also experienced grand mal seizures, more serious episodes which result in loss of consciousness and violent muscle contractions. Eventually, Dan's seizures evolved into complex partial seizures. These usually start in a small area of the temporal lobe or frontal lobe of the brain, but quickly involve other brain regions that affect alertness and awareness. After a complex partial seizure, a person may be tired or confused for 15 minutes and may not be fully normal for several hours. Another challenge for Dan is that he does not receive warning signals-or auras-before one of his seizures begin.
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Facing Fears

In May, after a seven-year journey through the ranks of Toastmasters, Dan faced one of his biggest challenges. He had to run a workshop on team leadership. If he succeeded, he would earn an Advanced Toastmaster Gold Level ranking.

It would not be a particularly dramatic setting, simply a conference room in an office building just north of Philadelphia. But it still would be public speaking, which three out of of four people say is one of their greatest fears. And for a man who, without warning, could lose control of his body and mind at any time, every moment Dan could hold the room would be a small victory, a pearl of empowerment.

As it turned out, he had three seizures that day, two as he got ready in the morning. But when it came time for his presentation, Dan walked into the room without hesitation. As he began to talk, he started to feel the energy that comes when he stands in front of an audience. It's an energy, he says, that gives him the courage to face his fears.

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Credits

Special thanks to Dan Dougherty, as well as Neil and Bernadette Dougherty, Joe Lempa and Professionally Speaking Toastmasters Club 4521 for making the telling of this story possible.

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