Health & Beauty

What I Learned by Speaking to Other Epilepsy Caregivers

In his long and successful acting career, Greg Grunberg has played a variety of heroic roles, from a fighter to an international spy. But his greatest role is one you may not have seen: Caregiver to a child living with epilepsy.

“Our oldest son, Jake, who’s now 26, and living well with the condition, started having seizures when he was seven,” Grunberg says. “Only we didn’t know they were seizures. They were like little staring spells. His teachers were telling us that he was zoning out occasionally and we would see it at home and ask him, ‘Come on buddy, pay attention.’”

While the Grunbergs soon realized that Jake’s issue wasn’t his attention span, it took time for him to be properly diagnosed. “For us, finally hearing the words, ‘this is what it is,’ was a sense of relief,” Grunberg says. “‘Okay, now let’s deal with this.’”

Dealing with it, however, was also full of trial and error. “Jake was hard to treat,” Grunberg says. “He didn’t respond right away to treatment. He’s been through a lot. But today, he’s an example of someone living well with his condition, he’s got a great job. He teaches Taekwondo. And please put this in bold giant letters: HE’S SINGLE, LADIES!”

The Caregiving Journey

As Grunberg and his wife, Elizabeth, navigated the healthcare system looking for the best treatments for Jake, he realized there was more he wanted to do to connect and help the community. “It was very scary back in the day. We knew nothing and we didn’t have anyone to turn to,” he says. “We had no history of epilepsy in our family, and we didn’t know anyone who was dealing with epilepsy. I started trying to make it less scary for people out there, including ourselves, by talking about it.”

Talking to caregivers and learning from their experiences is the basis of Grunberg’s latest work. In his web series, The Care Giver, he travels the country meeting caregivers and families of loved ones who have faced dozens—even hundreds—of daily seizures associated with epilepsy. “We wanted to really respect and showcase these caregivers,” he says. “It was a perfect thing to come together with Jazz Pharmaceuticals and do it right—to do a series.”

These stories are important, Grunberg says, because while no two caregiving situations are identical, all caregivers can learn from each other—a lesson he and Elizabeth had to figure out along the way.

“At the beginning, it was really hard for us to realize that,” he says. “The doctors, the foundations, everyone told us to talk to other [caregivers]. And at first, we were looking for someone exactly like us.” Exactly like them proved hard to find.

“We went to this meeting and there were some people whose seizures were so severe that they were in wheelchairs, and I was like, ‘Well, that’s not my son.’ And then there were people whose children had been seizure-free for 18 years, and I’m like, ‘That’s good for you, but that’s not us,’” Grunberg recalls. “It was hard at first, but I realized very quickly that [the exact situation] doesn’t matter and doesn’t really exist. Just talking caregiver to caregiver…there’s this shorthand and this kind of relief when you meet. You understand each other right away. And then when you’re talking, you pick up something. Little nuggets. I’ve learned something from every single one of these amazing people.”

Here are the lessons that he has taken away from The Care Giver.

Take Care of Yourself

“It’s like being on an airplane when they tell you to put your mask on before you try to help anyone else,” Grunberg says. “Your mind has to be right. You’re a caregiver, so unless you’re able to care, unless you’re healthy yourself, you’re just hurting the whole situation.”

That idea of self-care is so important, in fact, that Grunberg has made it the focus of his show. In every episode, he takes one caregiver out for a special day of fun and relaxation. “That’s really the thrust of the series, going in and giving each person their special day,” he says. “And it doesn’t have to be big things. Jon loves cars, so I took him to this great place where we got to drive old cars. Leslie and I painted. Brittany and I just hung out. It reminds me that it’s fun to explore and to have these moments.”

Find Your Time…However Small

While carving out time for yourself is a must, it isn’t always easy to do. For Brittany (pictured above with Grunberg), a single mom who’s one of the featured caregivers, the solution is getting up early. “No one needs anything at that hour of the day. You don’t have to answer questions or worry about anything,” she says. “For me, that’s my time where I can watch my shows, and I can take my time getting ready before [my son] Kasen gets up.”

Don’t Feel Like You Always Need to Explain Yourself

“I keep reminding myself that if people don’t understand what my family is going through, then that’s on them,” says Grunberg. “It’s their problem. You don’t need to explain to anybody what’s going on. Stop trying to please everybody.”

Instead, Grunberg says, seek out people who support you, especially other caregivers. In Brittany’s case, her supportive parents help her find ways to care for herself and Kasen.

“It’s so important to remember that you’re not alone—that’s the key,” Grunberg says. “It’s dark. It is. There are moments when you feel like you’re in a tunnel and you’re looking for that light at the end, so it’s really important to have people outside of the situation to talk to. I’m a big advocate of therapy or having a friend you can unconditionally talk to.”

It’s equally important to be able to share with, and trust, your care team. The key, says Brittany, is finding a doctor you can work with. “You have to make sure you have an open dialogue with your doctor,” she says, “because if you don’t trust the neurologist—or if you aren’t on the same page—it’s not going to go well. You have to find a neurologist who’s going to listen to you and your concerns.”

Don’t Lose Sight of Everyone Else

While much of the series focuses on the emotional and mental aspects of caregiving—and the importance of taking care of yourself—The Care Giver offers plenty of practical tips, as well. One that comes from Grunberg himself is to make sure you don’t get so focused on caregiving that your other kids feel left out. “When my middle guy, Ben, was seven,” Grunberg says, “we were driving and he said, ‘I wish I had epilepsy,’ and that just smacked us right in the face. We realized that he was equating epilepsy with attention and special time we were giving his older brother Jake. So we started doing ‘special nights’ giving each one of our boys some alone time with Mom and Dad.”

Never Settle

Once you find a doctor who listens, stay on top of the latest treatments, because you never know when one will come along that works. For Kasen, that was EPIDIOLEX® (cannabidiol), a cannabis plant-derived cannabidiol (CBD) medication that held promise for reducing seizure frequency in certain epilepsy conditions. “Our doctor told us about EPIDIOLEX® before it was approved,” Brittany recalls. “So we did our research on it, and as soon as we saw the FDA approve it, I called the doctor, discussed whether it was appropriate for Kasen and then started him on it…and he’s done well.”

In 2018, the U.S. Food and Drug Administration (FDA) approved EPIDIOLEX®, making it the first and only prescription formulation of a highly purified, plant-derived CBD medicine. It has been clinically shown to reduce seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome, and tuberous sclerosis complex (TSC) in patients one year of age and older. Results may vary. Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX®. Please read the important safety information available on the page.

Grunberg agrees. “Never settle,” he says. “That’s something that I preach over and over again. I hear people say, ‘We’re down to only three seizures a month,’ but those seizures can kill if [your child] is at the wrong place at the wrong time. Keep on it. If you hear about something new, talk to your doctor. You never know what little information you might hear that could change everything for the better. Advocate, advocate, advocate—don’t be afraid to speak up and don’t be afraid to talk about it.”

Live for the Day

This is Grunberg’s final piece of caregiving advice—to enjoy the good moments when they come. “Those little miracles, those little triumphs, those wins,” he says. “You have good days and bad days, and those good days become big victories. Enjoy it all.”

To learn more about Brittany and Kasen’s story, visit TheCareGiverSeries.com. Check back soon for future episodes where Greg will meet with caregivers and their loved ones living with epilepsy to discuss their journeys to diagnosis, the important role of caregivers, and the impact of treatment with EPIDIOLEX®. Greg Grunberg is a paid spokesperson for Jazz Pharmaceuticals. Brittany is a paid EPIDIOLEX® Ambassador.
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