HOUSTON (FOX 26) - You may know actor Greg Grunberg from his roles in Star Wars, Star Trek, Felicity or Heroes. He has an impressive portfolio, but he has another role -- father and epilepsy advocate.
Greg’s son has lived with epilepsy most of his life.
“Well, Jake started having seizures when he was seven. He's 22 now. He's an example of somebody who's living well with epilepsy," Greg says. "I have a thing called TalkAboutIt.org, which is with the Epilepsy Foundation of America. I'm trying to get the word out that you don't have to live with seizures. There are different therapies. There are different medications. You've got to talk to your doctor, and that's why I partnered with LivaNova and VNS Therapy. VNS Therapy, if people don’t know, it’s a little device that my son has right under the skin. It's connected to the vagus nerve and it stimulates his brain when a seizure is coming on. It's like a lifesaver for my wife and myself knowing, even at 22, knowing that there's something inside of him that is monitoring. And then the medications work so well.”
Greg says Jake is doing very well and is working on the new Star Wars with his job at Bad Robot. He says Jake is also an advocate.
“He talks about all this stuff as well. So I’m super proud of him and everything we're doing with Talk About It. I have a podcast called ‘Talk About It’,” Greg says. “The epilepsy community is one that has had stigma attached to it for so long because it's scary to see someone have a seizure, but once you know that it's just an overstimulation in the brain and it goes away after a few minutes. There's an education that needs to happen, and we're trying to do that.”
What made Greg decide to become an advocate?
“It’s a very hopeless feeling as a parent of a child that has anything that needs to have medical attention. You feel like you're just reacting instead of being proactive,” Greg says. “So my wife and I decided a long time ago, we were like the more we talk about this, the more people will understand the condition, the more they'll understand that they don't have to settle for seizures and that there's all these different things you can do from changing your diet, living healthier, to, you know, VNS Therapy to the medications, whatever. Talk to you epileptologist. Talk to your doctor.”
Greg says getting the word out was something he knew he could do as an actor.
“It’s been really great and been therapeutic for us, to be honest, because like I said, we're doing something instead of just hopelessly waiting for the seizure to end,” Greg says. “And luckily through talking to doctors, talking to other patients and things and people, we've learned about all of this. That's the toughest thing is when I meet someone who has a child who has seizures and they don't know about all the things available to them. It's educating people that is kind of my job.”
Greg says the key piece of advice he would give to a caregiver or someone who does have epilepsy is "don’t settle".
“Don't say, well, we only had one seizure this month or we're living with this side effect or whatever from the medication. Don't settle. Keep asking questions. Keep talking to your doctor. Because there are things you can do like take a nap, you know, that works for certain people. You know, yoga or destressing or just meditating or, you know, any of that stuff. Mainly the stuff that's available to you. Learn about all your options and talk about it. Don't be afraid to talk about it," Greg says. "Go to TalkAboutIt.org. Go to epilepsy.com. Please listen to my podcast 'Talk About It'. Search my name.”