“It’s incredible that this is something that’s been around forever, and there’s such a stigma attached, and there shouldn’t be,” actor Greg Grunberg says of medicinal cannabis. “There’s such a stigma attached to epilepsy, and there shouldn’t be. I understand it with epilepsy, because you watch someone have a seizure and it’s scary. But there’s nothing scary about cannabis.”
Known for his longstanding characters on Felicity, Alias, Heroes/Heroes Reborn and in the box-office smash Star Wars: The Force Awakens, Grunberg’s most important role hits closer to home – epilepsy advocate. His oldest son Jake was diagnosed with the condition (a chronic neurological disorder which causes unprovoked seizures) at age 7, and ever since the father of three has been on a mission to heighten public awareness and fundraise for research and treatment.
In 2007 Grunberg founded TalkAboutIt.org in partnership with the Epilepsy Foundation; it’s a website where Greg creates new avenues of communication for patients, caregivers, healthcare professionals, and the global society to eliminate taboos surrounding the disorder. As we learn from videos on the site featuring our favorite celebrities (including Kristen Bell, Jennifer Garner, and Hayden Panettiere), the condition affects 65 million people worldwide, with 3.4 million in the U.S. alone. 1 in 26 Americans will develop epilepsy in their lifetime, and 33% of all patients are living with uncontrollable seizures because they haven’t found a treatment that works for them. This was Jake Grunberg’s reality – until his dad decided to try medical marijuana.
The Grunberg family’s experiments with cannabis treatment for Jake began in 2014, shortly after CBS aired the 60 Minutes documentary on “Charlotte’s Web,” a medical strain curated for the use of young children. Although Greg was interested in learning about medical cannabis, and its use has been legal in his home state of California since 2003, he came to the investigation with parental concerns.
“We’ve been going through ‘the epilepsy carwash’ for a long time,” Grunberg explains.
And we learned very quickly that it’s important to find the right medication, the right treatment and doctors, as soon as possible to get the seizures under control. [Many people] respond to the first medication that they’re given by their doctor, and Jake fell under the percentage that didn’t. It’s important for everyone in the epilepsy community to understand that they need to get to not just a neurologist, but an epileptologist. We were with a pharmacologist, a neurologist who specialized in epilepsy and knew a lot about the combination of medicines. Because of that, Jake was and still is on a cocktail of medications. There are some incredible medications out there… But we kept hearing stories about medical cannabis and how it was helping different conditions, and hard-to-treat epilepsy was one of them.
He continues, “I didn’t like the idea of trying cannabis for Jake in any form that we couldn’t measure: ‘Okay, we gave him too much or too little.’ I didn’t want to get it in the form of a candy or cookie. We were able to get hold of a strain that had a high ratio of CBD and only one part THC – it’s drops, like an oil – You put it under your tongue. Jake does it in the morning and at night, and it seems to help him sleep, which is really important for somebody with epilepsy, because lack of sleep and fatigue can absolutely lead to more seizures.”
While Greg clarifies that Jake started using his drops at age 18 (he’s now 21) and that these are from a different strain than Charlotte’s Web, the ratio – 25 parts CBD to 1 part THC – and effects are comparable. When combined with his other medications, cannabis appears to have helped reduce Jake’s seizures tremendously.
“In my mind, this is not a substitute for medication in any way,” Grunberg emphasizes.
Other people may feel differently. In our situation, we know that cannabis is not the silver bullet, that Jake definitely needs all his other medication too. But from what we’ve seen and our neurologist has said, the cannabis actually helps his medications work more efficiently and effectively. What that means for us is we can start titrating down his other medications. It’s really a balance. You have to be talking to your doctor all the time.
Obviously, cannabis use is not without its side effects. Studies verified by the Epilepsy Foundation since 2015 have found that certain patients (about 16-22% of those in tests of 214 people) experienced additional drowsiness, diarrhea and upset stomachs when taking CBD oil. (Interestingly, researchers noted that patients receiving placebos also reported the latter two side effects; they believe the stomach problems are symptoms of components in the oil, not the cannabinoids.) This still seems a small price to pay considering the upside: The studies showed most patients’ seizures decreasing by an average of 54% when using medical cannabis in conjunction with standard epilepsy medication.
Asked whether he might have started Jake on cannabis at a younger age had the drops been available sooner, Grunberg responds, “That’s a really good question.”
It’s definitely something we felt more comfortable trying once he was 18, and that’s something every parent or caregiver has to think about for themselves. I mean, Jake had brain surgery when he was 12 ½. Brain surgery’s the downright last resort, but he was having hundreds of seizures a day. When that happens, as a parent, you will do anything to stop it. We turned to brain surgery, because he was a candidate. So would I try cannabis, which is absolutely harmless and non-addictive? Yes, I would try that before I try some of the other things.
Being in this community as a parent, we will do anything to get our son’s seizures under control. As we see now, cannabis is extremely beneficial. For so long we’ve thought of it as associated with all these hardcore drugs, and it’s not at all.
He laughs before admitting, “I didn’t grow up as a pot smoker, but of course I can’t let my son try something that I haven’t tried. So I tried the drops and smoked this strain, and it is absolutely harmless. It just kind of calms you down and chills you out, like a shot of whiskey. But the really important thing for people to understand here is that it can help, but you’ve got to ask your doctor about it.”
It’s amazing to realize how two heavily stigmatized subjects, epilepsy and cannabis, are now coming together. We haven’t begun to scratch the surface of what medical cannabis can do, or understand all the potential treatments and cures for epilepsy, but we’re getting there. The best path to innovation is through open conversation, as Greg’s advocacy shows.
“As far as hope is concerned, it’s a great time to have something like epilepsy,” he comments, “because now you can find medications that really work and it’s getting better all the time.”
But it can be so scary for people if they don’t know what to do. The key [information], like never sticking anything in someone’s mouth when they have a seizure. That’s an old wives’ tale. Don’t hold them down; let them have their seizure. Bring them gently to the ground and put something under their head – it’s the fall, the trauma to the head, that hurts them. This is really what I do, encourage people to talk about epilepsy and not be afraid of the stigma. That’s why I created TalkAboutIt.org.
Having completed National Epilepsy Awareness Month in November 2017, Grunberg is on a roll. He and Jake hosted a team at the Pasadena Rose Bowl’s Walk to End Epilepsy, which they have done for several years, and with Talk About It!’s sponsors he’s been spearheading a viral social media campaign that has huge material impact. For every post with the hashtag #MyEpilepsyHero across any platform, Sunovion Pharmaceuticals will donate $1 to the Epilepsy Foundation (they’re also helping Greg to bring Talk About It! to its next phase). Use photos or videos in your posts to share who in the epilepsy community has inspired you, and that’s a quick, easy way to fundraise for research and keep the conversation going at the same time.
Of course, Hollywood keeps Greg pretty busy too – he will be seen in the upcoming A Star Is Born remake starring Lady Gaga and Bradley Cooper, and has a major role in HBO’s Joe Paterno biopic, directed by Barry Levinson and starring Al Pacino. He’s recently released episodes of his new podcast called An Actor, a Comedian and a Musician Walk Into a Bar (co-hosted by Kirk Fox and Nick Marzock), on iTunes. As he says, “It’s a great platform where I can ‘Talk About It!’”
And music fans can always find him performing around the country with Band From TV, the fundraising juggernaut Greg founded to benefit worthy causes through rock and roll. (Other members include fellow Hero Adrian Pasdar, Desperate Housewives’ James Denton, Chicago Fire’s Jesse Spencer, The Bachelor’s Bob Guiney, and The Orville’s Scott Grimes.) But home is in the heart.
“Luckily through the band we’re able to raise money for Talk About It! and I can do stuff like this to get the word out about epilepsy,” Grunberg sums up.
And I’m so proud of Jake. He’s doing all the things a 21-year-old would normally do. He’s a black belt in Tae Kwon Do – he just had his tournament and took gold in board breaking and all these forms. He’s got a great job in the film business that he loves. He’s successful and he’s happy. Epilepsy is something you’ve got to stay on top of all the time, but he doesn’t let it stop him. He really is my hero.
Let’s not forget that Jake’s dad is one too. Father and son are in this together, fighting the good fight. Because whether it’s epilepsy or cannabis, it’s time to break the silence and give back to the global community. Let’s eradicate the stigma. There’s so much we can share with each other, if only we don’t bogart the vital information.
For more about epilepsy research and treatment, visit TalkAboutIt.org and epilepsy.com. For upcoming tour information and more about the charities Band From TV supports, visit bandfromtv.org. Follow Greg on social media – @greggrunberg – for updates about the #MyEpilepsyHero campaign, and find his new podcast on iTunes here. Greg is also the author of the DREAM JUMPER series of novels; Book 2 is now available.