Greg Grunberg, who has appeared in multiple Star Wars projects, has partnered with Jazz Pharmaceuticals to bring “The Care Giver”, a video web series, to life.
From Left: Leslie Fox and Greg Grunberg Courtesy of The Care Giver series
When a child is diagnosed with a devastating illness, parents and caregivers pour everything into ensuring their loved one receives the best care possible. And that can mean that caregivers often deprive themselves of the care they also need. In those cases, the question of “who takes care of the caregivers” arises.
Greg Grunberg, a writer, actor and father to a son with epilepsy, has taken up the challenge to ensure that these caregivers are not forgotten. For several years, Grunberg has hosted a podcast sharing information about epilepsy and other issues close to his heart.
Now, Grunberg, who has appeared in multiple Star Wars projects, has partnered with Jazz Pharma to bring “The Care Giver,” a video web series, to life. Grunberg travels across the country, meeting with patients’ biggest supporters, shining a light on their efforts and trying to bring some needed joy into their lives.
“I learned early on that there wasn’t a voice or a support system for caregivers,” Grunberg told BioSpace. “It’s important that you talk to them, find out what’s going on with them.”
Grunberg is well aware of a parent’s sacrifices for a child with a serious or chronic medical condition. His son Jake was diagnosed with epilepsy when he was seven years old. Grunberg and his wife learned that when they thought their son was “zoning out” and not paying attention to them, sometimes it was because of short, seconds-long seizures he was having.
“It’s like an earthquake that can strike any time,” Grunberg said of his son’s seizures.
There were countless trips to doctors and specialists to determine the best care for his son, including the types of medications that could best keep his seizures at bay. The first drug didn’t generate much of a response for him, but a treatment program was established after multiple tries. Today, Jake is 26 years old and his condition is largely controlled through a combination of different medications. While he is thankful for the drugmakers who have provided his son with stability in his life, Grunberg said they continue to monitor new medicines that are hitting the market, wondering if those drugs could provide even better disease management.
“With new drugs coming out, you have to talk with your doctor, see if things should be switched up in order to keep moving forward,” he said.
Grunberg also recommends that people who may spend time with an epilepsy patient take a few minutes to learn more about the disorder and what they should and should not do if someone is having a seizure. His biggest concern is ensuring that the individual in the throes of a seizure does not fall and strike his or her head.
“It’s not the seizure that hurts the person, it’s the fall. If they do fall, that’s where the problem lies,” he said.
In the case of his son, Grunberg noted they provide “free hugs” if they notice the beginnings of a seizure, which can sometimes be observed if an individual slurs their words or their walking gait changes. If you notice that, reach out with a hug and help guide that person to a seated or reclining position so they don’t fall and hurt themselves,” he said.
As Grunberg travels across the country with “The Care Giver,” he’s meeting with others like him and his wife, who devote countless hours to providing the necessary care and advocacy for a charge diagnosed with epilepsy. So far, Grunberg has visited three different families as part of the series. Ahead of those visits, he likes to find out as much information as possible about the people he will meet to tailor a positive experience for them.
For example, Grunberg met one caregiver, Leslie Fox, who loved to paint and create art. However, all of that was pushed to the side when her child was diagnosed with epilepsy. The time that could have been spent on her passion was instead spent ensuring her child had the best available care. When he met with the caregiver, Grunberg said he secured access to an artist’s loft for an afternoon, along with an art therapist, and the three wiled away the time creating art while sharing their life’s experiences.
Another caregiver, Jon, is a car enthusiast. When Grunberg met with him, they spent the day behind the wheel, driving around and enjoying the open road, as well as creating a bond as fathers of children with epilepsy.
“I’ve learned so much from each of these families. Our experiences have been similar but also different. I’m so blessed to be able to do this. This is one of the best things I’ve done in my life,” the actor who starred in the NBC show “Heroes” and the ABC show “Alias” said.
Currently, “The Care Giver” is focused on epilepsy because that’s “near and dear to my heart,” Grunberg said. But, with the support of Jazz, he hopes to be able to branch out and talk to caregivers about other disease indications that Jazz is developing or has developed therapeutics to treat.
“I’ve never seen a company like Jazz that cares this much,” he said.
