Known for his role as a pilot in “Star Wars,” actor Greg Grunberg has traded in his flight suit to travel cross country to bring awareness to epilepsy care, treatment and patient needs.
In February 2022, Grunberg debuted the YouTube series “The Care Giver,” in which he travels the United States to share stories of those in the epilepsy community, while providing support for caregivers and advice that addresses their personal needs. The series is sponsored by Jazz Pharmaceuticals.
Healio spoke with Grunberg, as well as Michael G. Chez, MD, a pediatric neurologist at the Sutter Institute for Medical Research in California, to learn more about the series and how it aims to benefit the epilepsy community.
Healio: How did the idea for the series come about?
Grunberg: Our oldest son, Jake, has epilepsy, and he was diagnosed when he was 7. We had no knowledge of what epilepsy was, just the sort of knowledge that everybody thinks they have — I saw somebody in elementary school hit the floor and have a seizure.
We didn’t know that there were so many different types of seizures, and we didn’t have any history in our family. He’s 26 now, so we’ve been through what I call the rollercoaster of going through all of this. He is doing really well, thanks to great medications, great therapies, great doctors and all that. But at the time, it was really scary, and we didn’t have anybody to talk to. There’s such a stigma.
I hope I’ve made a dent in that stigma over the years, but I kept hearing the same thing over and over again — you’ve got to talk about this, not enough people are talking about it. And so, I bought the domain “talkaboutit.org.” I was like, I’m going to enlist the help of every one of my celebrity [friends], whether you’re in or out of the epilepsy community.
I wanted to get people educated so that there wasn’t ignorance, there wasn’t a stigma, there wasn’t misinformation out there. If you see someone have a seizure, you could really save their life if you did the right thing. It’s very simple.
Healio: How does “The Care Giver” series benefit those in the epilepsy community?
Chez: This is an inspiring video series that shows Grunberg traveling around the country to help tell the stories of others in the epilepsy community, from searching for an accurate diagnosis to exploring new treatment options.
However, more importantly, Grunberg provides these caregivers with a much-needed day of care. Unfortunately, a common theme that I’ve seen firsthand as a pediatric neurologist is that caregivers do not prioritize their own health as much as they should and tend to put themselves on the backburner.
It is important to remember that in order to be able to provide the best care for loved ones, it is just as crucial for caregivers to take the time to care for themselves. I am so glad to see that the series encourages caregivers to prioritize their own health and well-being.
Grunberg: Every time I talk to a caregiver, it is sort of this safe way in. It’s a great way to talk about what they’re dealing with, the person in their life, how much they love them, how much they care for them. All we want for our loved ones is for them to be healthy and happy. You just want that silver bullet. If you hear about something you go, “How do we fix this?” In the case of our family, we deal with things head on. And so, that was a big thing for us. When I’ve met all these people, I’ve always had it in the back of my mind — these caregivers are really interesting. I’m one of them.
I’m traveling all over the country now, and I’m meeting these incredible people. This also happened at a time when we all realized how important rare forms of epilepsy are. And my son didn’t respond to the first medication. He’s one of those people that’s difficult to treat. And I know that there are so many out there, and I understand their situation.
Healio: What can this series provide that a clinician cannot?
Chez: The series brings caregivers together to share stories and experiences that take place when caring for loved ones who are living with rare and severe epilepsies. Clinicians may not be able to personally relate to caregivers’ experiences, as we tend to prioritize and focus on each patient’s care. For the caregiver, the journey can feel quite isolating. The series aims to provide strength for other caregivers in knowing they are not alone on this journey, and that there are in fact others going through similar experiences — for both the inspiring and difficult moments.
Grunberg: Every situation is different. That’s the other frustrating thing that we learned many, many years ago is you want to talk to somebody, you need to talk to somebody, and therapy is great, but you want to talk to somebody immediately. You want to see somebody who’s going through exactly what you’re going through, but it’s not going to happen. And so, you get frustrated at times.
But when I meet these caregivers, no matter what situation or what form of epilepsy or seizures their loved one is dealing with, there are so many similarities.