Scott’s Story: The Epilepsy Ambassador

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Scott_FlyingPig_200x300Scott was working his dream job as a commercial airline pilot 10 years ago when his life was forever changed by epilepsy. After coming home from a long run, he complained of nausea and then collapsed with a grand mal seizure. The preliminary diagnosis was a brain tumor. But when a brain biopsy came back negative, his doctors revised their assessment. Although Scott had never traveled to exotic lands as a pilot, he had somehow developed a mysterious brain inflammation that unleashed seizures.

In a stunning reversal of fortune, Scott, only 33, would never fly again. “When you go from flying a $50 million airplane to being on a leash and people knowing where you are at all times, it’s a bruise to your ego,” he says.

Fortunately for Scott, he had a loving and supportive family. He also had access to the UC Epilepsy Center, whose multidisciplinary team worked hard to understand his seizures and to maximize his independence and quality of life. By mapping Scott’s seizures while he stayed overnight in the Epilepsy Monitoring Unit, his team discovered that the lesion causing the seizures lay within the folds of the occipital, parietal and temporal lobes of his brain. Scott’s epilepsy was complex. It could be tamed, but it probably could not be cured.

Under the care of his epileptologist, Dr. David Ficker, Scott takes a medication that has eliminated the grand mal seizures that can lead to loss of consciousness. But no medication has eliminated the complex partial seizures that occur about twice a week or the simple partial seizures that occur multiple times each day. The complex partial seizures begin with an aura that gives Scott “a creepy feeling and a sense of déjà vu.” They then progress to a state in which he feels and acts disoriented. The simple partial seizures, Scott says, affect his vision and “happen so often it’s like wall paper. Once you put it up you don’t notice it. It’s like looking through a prism in sunlight.”

“We have struggled with balancing seizure control and cognitive side effects of seizure medication,” Dr. Ficker says. “But over the years, we have succeeded in getting Scott on a medication that allows for better seizure control and enables him to live a more normal life. That includes running marathons!”

Four years ago, Scott began running again with his son at an after-school running club. A year later, he was running races. Marathons inevitably followed. And some big things happened. Running made Scott happy, reduced stress and reduced his seizures. And when Scott did experience seizures during his races, people learned about epilepsy and helped Scott make it to the finish line.

Before the 2015 Flying Pig, Scott briefed his pace team about his epilepsy. “I explained what my seizures looked like and asked them to just keep me pointed in the right direction. I had a complex at mile 2 and I think everyone relaxed once they saw what one looked like. My second complex was around mile 10. The touching part about this one was, once I started to feel better, I realized the other runners had made a protective circle around me. The people in my pace group all went home that day with a completely different perspective on epilepsy. I’m happy that people got a little knowledge out of it.”

— Cindy Starr

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Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

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