There are 2.2 million people in the U.S. with epilepsy, which causes seizures that can range from mild involuntary movements to uncontrollable convulsions. Most people don’t know what to do, and unintentionally may hurt the person having the seizure by providing the wrong kind of help.
Kevin Muldoon, 50, has epilepsy and suffered from seizures until he underwent brain surgery in 2007. A patient at the Rush Epilepsy Center, he is sharing his story to help people better understand the disease and what to do in response.
I want to raise epilepsy awareness. I was born with epilepsy, and I was diagnosed when I was 2 years old.
My mother told me I had my first seizure when I was six months old. Growing up, I would have as many as three seizures a day. They lasted five minutes at least. I would be tired afterward from all the shaking. It takes a lot out of you.
I graduated from high school, and that’s the highest education I got. Then I worked 18 years as a stacker for a food company. Eventually, all the medications I had to take to fight the seizures got to be too much, and I couldn’t keep working.
In adulthood, I could go a month with having a seizure. But when I had a seizure, I had no warning whatsoever. It would just come on. It would never be at work or school, it would always be at home.
One time in the emergency room to stop the shaking, they intravenously gave me valium. It left me with a jerking on my left side, and that’s 24-7.
If you see someone having a seizure, first of all make sure they’re comfortable. If there are any sharp objects around, get them away. Put a pillow or something under their head so they won’t hurt themselves.
Don’t try to move the person, but lay them on their side so they won’t choke on their saliva. Do not put anything in their mouth.
If there’s a crowd around, clear the way. If the seizure goes on more than five minutes, call 911.
I’ve been in and out of so many different hospitals I can’t count, but once we found Dr. Michael Smith, my mom and I fell in love with him.
He understood me, he knew what was going on, he was genuinely happy to help, he was kind. I like him because he listens to what I have to way, and what my parents have to say.
When I asked about surgery, he said, “Let’s try this medicine before we go into your brain.” He said I could be paralyzed or something else could happen. My seizures were getting worse, though. Every time I saw him, I said, “the medicines aren’t working, we have to go in.”
In 2007 I had the surgery. The surgeons scooped out the bad part of the temporal lobe that caused the seizures. I haven’t had any major seizures since the surgery. But I still have the tremor.
I stay home with my parents and help them. I spend time with my friends, watching movies and talking. I also sign up a team each year for the Epilepsy Foundation of Greater Chicago’s fundraising walk.
My first walk, only five people were there. It just grew after that. My brother’s friends from Arizona donate. A sister and donates every year and has been walking for five years.
I just want to help those that can’t afford their medication or treatments. I feel like I should be helping those that can’t help themselves.
Kevin Muldoon lives in River Forest. He told his story to a staff member at Rush.