epilepsyUSA: When were you diagnosed with epilepsy?

Ed Thompson: Forty-five years ago. When I was 13 years old.

epilepsyUSA: What happened when you were diagnosed? What kind of seizures were you having?

Ed Thompson: I was having tonic-clonic seizures at the time. At first, I was just acting strangely. It was 70 degrees out, and I wanted to go ice skating. People knew something was wrong, but they weren’t quite exactly sure what. I was taken to the hospital for the first time, and that was December of 1964.

epilepsyUSA:That was 45 years ago. What kind of experience was that for you to go through then, because epilepsy really wasn’t very much talked about, was it?

Ed Thompson: No. There were two things that were probably going against me right at the beginning. One was my age and the fact that when you’re in junior
high school and high school, kids tend to be mean— particularly about things they don’t understand. Second of all, it wasn’t talked about, and my parents never talked about it. No one ever talked about it. There was a considerable effort made to hide it.

epilepsyUSA: Was that difficult for you?

Ed Thompson:Yes. And having epilepsy in high school was just a little bit more difficult because no one understood it. There was no such thing as an
epileptologist—I was only dealing with general neurologists. This went on until about 1996, when I was finally recommended to Dr. Orrin Devinsky in New
York. My neurologist didn’t know what to do with me at the time—there was really nothing else he could do—so he sent me to a specialist. Dr. Devinsky put me in the hospital to do a video EEG and other things that I had never heard of—things that I didn’t even know existed—because basically I had been going to doctors who hadn’t concentrated on them.

epilepsyUSA: Was it beneficial for you to finally see an epilepsy specialist?

Ed Thompson:Yes, tremendously so. There was great comfort in dealing with a group of doctors who understood what it was like—the consequences of living with this disorder. Dr. Devinsky, and later Dr. Anuradha Singh, tried many combinations of drugs with me, trying to strike a balance between controlling my seizures and limiting the drugs’ side effects to maintain my quality of life. In 2007, Dr. Singh, believing that more could be done to control my seizures, strongly recommended that I get a VNS implant, which I did. I’d had it in for several weeks when my wife said to me, ‘You know, your mood is a lot better.’ That’s one of the positive side effects of the VNS for some people.

epilepsyUSA: Why is awareness of epilepsy so important to you?

Ed Thompson: I think people should be aware, because people with epilepsy have a neurological disorder—it’s an illness like any other illness—but other than that, they’re normal people.

epilepsyUSA:You came to the Walk, right?

Ed Thompson: Yes, we had 27 people there. My wife was there, my parents, my uncle, my aunt, my sister who lives in Bethesda and her family, and my brother came down from New York with his family. My daughter got all kinds of friends at school to sign up. My son was there. Various other friends of friends were there, too, so we had a lot of people. Many of my other relatives who couldn’t make it to D.C. did virtual walks. It was really touching. The Walk brings everyone together, and regardless of where they’re from or how old they are, no one feels too shy about talking about epilepsy, which is always helpful.

epilepsyUSA: That’s a big contrast for you coming from 1964 when no one talked about epilepsy to being the age you are now and walking on the National Mall with 9,000 other people, right?

Ed Thompson: Yes. When I was 13 years old, I only knew one other person with epilepsy, and that was a friend of my father’s. I didn’t know anybody else, really. When I retire—even before I retire—I’d like to volunteer for the Foundation because I think it’s good that younger people know that there’s something to look forward to. They need hope that they have full and rich lives ahead of them. To believe that, they need to see that other people have done it. If they see an example of somebody who can go to college and get a job and get married and have kids, that’s a good example.

epilepsyUSA: I know that you’re a longtime supporter of the Epilepsy Foundation.

Ed Thompson: The way I think about it is, there wasn’t a lot of money going into epilepsy for research purposes, and the money that has gone into it for research over the past couple decades has helped produce some drugs that have worked, which is good. I’ll continue to support the Foundation and give what I can, but I’ll also support it with any kind of volunteer work I can do.