Greg Grunberg is a Hero for Epilepsy

by Susan Wagner (Subscribe to Susan Wagner's posts) Apr 1st 2009 5:00PM

Greg Grunberg plays a superhero on television -- specifically, a guy who can read minds and control people's thoughts. But the "Heroes" star says his son Jake is the real hero. Jake, now 13, was diagnosed with epilepsy at age seven. It started with what Grunberg describes as "staring spells," and got worse from there. "We were terrified," he told ParentDish. "As a parent you've got to run as fast as you can for as long as you can until you get it under control."

Grunberg, 42, and his wife, Elizabeth Dawn Wershow, started down a long road of doctors and medications only to find that Jake fell into the 20 - 25 percent of people with epilepsy who don't respond to conventional treatments. As he entered puberty, his seizures worsened, which terrified the family. Their worst fear was that Jake would suffer a head injury during a seizure. "Head injuries can be deadly," Grunberg says, the concern clear in his voice.

This year, though, Jake had brain surgery, to remove the "hot spot" that was causing his seizures. Grunberg credits the surgery with changing his son's life. Now Jake's seizures are much less frequent -- every few weeks, rather than every day.

"You'd never know Jake had epilepsy," Grunberg says, "unless you saw him have a seizure."

Royal Family

Princess Diana with Prince Charles and their sons, Prince William And Prince Harry at home in The Gardens Of Highgrove House.

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Princess Diana with her sons Prince William and Prince Harry at Wetherby School on September 12, 1989 in London, England. It was Prince Harry's first day at school.

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Prince William arrives with his mother, Diana, Princess of Wales, and Prince Harry for his first day at Eton College on September 16, 1995 in Windsor, England.

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Prince William salutes his father Prince Charles as he leaves, following The Sovereign's Parade at the Royal Military Academy.

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Prince Charles and his sons Prince Harry and Prince William arrive for the Service of Thanksgiving for the life of Diana, Princess of Wales, at the Guards' Chapel, in London. Prince William and Prince Harry organized the service to commemorate the life of their mother on the tenth anniversary of her death.

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Prince William and Prince Harry on stage during the Concert For Diana at London's Wembley Stadium. Waving their arms in the air, rocking their hips and cheering along with around 70,000 fans at the stadium, the princes paid tribute to their mother at the concert on what would have been her 46th birthday.

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Princes William and Harry, attend a reception after the concert in memory of their mother Diana, Princess of Wales

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Prince William and Prince Harry attend the Cavalry Old Comrades Association Annual Parade in Hyde Park on May 13, 2007 in London, England.

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Prince William and Prince Harry prepare to set off at the start of the Enduro 2008 Motorcycle Rally to benefit UNICEF, in Port Edward, South Africa.

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Prince William and Prince Harry watch the fly by from the balcony during Trooping The Colour at Buckingham Palace on June 14, 2008 in London, England.

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But while epilepsy has never slowed Jake Grunberg down -- he goes to school and plays baseball and does all the things that typical kids do -- his dad is aware that there are a host of misconceptions about epilepsy. Grunberg decided that he wanted to "change the way the world looks at epilepsy," so he partnered with the Epilepsy Foundation to create Talk About It, a website designed to provide information and foster conversation about epilepsy.

Grunberg is no stranger to social media -- he was one of the first Hollywood celebrities to use Twitter -- and he knew that the web was the easiest way to reach people and get them talking. The site is full of useful information about epilepsy, and the tone is light and fun. Chris Pine and Zachary Quinto (James T. Kirk and Mr. Spock) banter about what to do if someone has a seizure, while musician John Mayer dishes about how a seizure disorder affects a person's lifestyle. How did Grunberg get all these famous people to help with his project? Simple: He carries a camera with him everywhere, and when he runs into other celebrities, he asks them, "Will you do this for me?" They always say yes.

Talk About It's tone is pleasant and upbeat, and the design -- the various video clips are all framed by a subway tunnel back drop -- is edgy and fun, which is exactly what Grunberg wanted. "If the name was 'Talk About Epilepsy,' it would be scary," he says. The goal of the site is simple: To change the way we talk about this disease. That way, Grunberg says, "It's not so scary and everybody's prepared."

Grunberg fosters open conversation about health issues with his own kids, and encourages other parents to do the same. "If they see a child that has something that makes them different in some way, ask them about it. Don't pull your kids away, don't be afraid -- put yourself in that position for about five minutes and ask them." His own kids -- Jake and brothers Sam, 5, and Ben, 9 -- are happy to talk about Jake's seizure disorder; to them, it's a fact of life.

Grunberg is affable and funny and easy to talk to, which makes him the perfect person to stand up and speak out about epilepsy. To him, this is just a conversation -- it's not frightening or upsetting, despite what he's been through with his son. "When things are really tough," Grunberg says, what matters is "knowing that there's a light at the end of the tunnel, and that you're not alone." Talk About It provides that light, for parents and families and friends of people impacted by epilepsy.

Comments (43)

Reader Comments (Page 1 of 3)

WhiteTigerL77 4-02-2009 @ 7:58AM

Hi,my name is Jackie, and I have epilepsy also and I know how it feels to have stairings first then it comes on as gran mal seizures.Im meds for it and its working very well.I havent had a seizure for about six months since Ive been on Keppra.Im also on Lamictol.Both of them are doing the job.Im happy that your son is doing much better after his surgery.I had lead poisoning thats how i got epilepsy.Ive had it since I was 18 months.Im now an adult married with 2 boys who doesnt have it.Thank God for that.

UFO654 CAROLE 4-02-2009 @ 9:34AM

EPILEPSY!! TALK ABOUT IT AND KNOW WHAT YOU ARE TALKING ABOUT!
I was not diagnosed with Epilepsy until I was 23 and 5 months pregnant. In the middle of the night I suffered a "grand mal" seizure and was thereafter diagnosed. In those days I had to go "to the city" to have an electroencephlagram....I was given dilantin and later coupled with phenobarbital. Thankfully I had only a dozen grandmal seizures. However, the tragedy in looking back on my life is that I had "petit mal" seizures much like "staring" etc..and my family just thought me a little odd. I was 13 at that time and when I was 17 my mother sent me to the family physician who was an idiot.....and was grossly negligent as he told me the following"You have "stagnate amnesia and when you want to block something out, you go into this mode". He never sent me to a neurologist or tested me. Therefore, I suffered from age 13 till I was 23 with countless "petit mal seizures" always thinking "I am one odd duck".......

WhiteTigerL77 4-02-2009 @ 10:03AM

I was on phenobarb and that made me spacey so my docs took me off that.And I was also on dilantin and that made me have alot of seizures and I was also on it when i was pregnant with my oldest son hes 17 and will be graduating from high school this year.My doctor took me off of that and put me on tegratol.I was having seizures with that also and got pregnant on that medication.My 17 year old was 6 at the time.So my doc took me off of that one and put me on lamictol and thats been working out just fine,until I did have a few seizures and my doc put me on keppra they have been working terrifficly.

Noelle 4-02-2009 @ 1:35PM

Hey, I'm on the same two meds. I'm tired ALL THE TIME and it hasn't stopped my seizures at all. I usually get them every couple months. I have been thinking about surgery, but I'm afraid I will come out too damaged. If you have any help, let me know.

George Venesky 4-02-2009 @ 7:10PM

Sadly, eight years were lost in uncovering a treatment, and perhaps a cure, due to the veto of George W. Bush, twice, for stem cell research. God Bless Obama, and GD George W. Bush.

Brenda 4-04-2009 @ 8:52PM

I am a 60yo woman who developed grand mal seizures at the age of 7. For the past five years I have ben seizure free, but the years
in between were filled with challenges. I blessed with parents who
belileved that I could do anything (within the realm of doctor's orders) that I wanted to do. When I was graduating from high school, there were restrictions at beauty academies, so I became
a secretary. Married. Divorced. A relatively normal life except for
the rude people who stared at me. I was on phoenobarbital and
dilantin for most of my life with seizures. Tegretal only worsened
the seizures for me. Luckily, my family and my relationship with the Lord helped me through the intervening years.

I want to thank Greg for being so forthcoming about this issue.
God bless him and my God be with his son.

Gigi78624 4-02-2009 @ 8:28AM

Horray! The motto of any parent with a child that has epilepsy should be "The more you know, the more you CAN know". Thank you for offering us another layer of education. Congratulations on your success with your son so far. (there will be more!) Gigi78624

Angiebaby 4-02-2009 @ 9:07AM

Many times medication which controls seizures have unwanted side effects. Seizure meds may curtail seizures, but they can cause lethargy, apathy and also curtail a person's life. You know, they solve one problem, but create another. I'm so glad there was an innovative option available for Jake, and he has had such good results. Now maybe he will respond to meds, at small enough doses to allow him to control seizures, but still actively participate in his life to its fullest extent.

Kudos to the family for talking openly about a very scary subject like seizures. The seizures may still be unnerving, as they will always be, but children are more frightened about what they don't know, and the conclusions they can reach on their own can be quite outrageous. But knowledge and understanding not only make children smarter and more compassionate, they help children keep fear in perspective.

UFO654 CAROLE 4-02-2009 @ 9:42AM

WENT TO THE SITE.......THERE SHOULD BE A BLOGGING AREA HERE.......THERE SHOULD BE A PLACE WHERE.."PEOPLE CAN TALK ABOUT IT"....ALL I SEE IS THE DAD SAYING A FEW THINGS, A DOCTOR SAYING A FEW MORE, AND SPONSORS AND DONATE........HOW CAN ONE TALK ABOUT IT.........IF THERE IS NO WHERE TO DO IT??? SO IN THIS CASE SORRY THIS WEBSITE DOES NOT ALLOW ANYONE TO "TALK ABOUT IT"

Jo 4-02-2009 @ 10:09AM

Hi. My nieces son has epilepsy. Go to her web-site
www.seizuresupport.com

Tammy 4-02-2009 @ 9:57AM

I was very pleased to read about the young man who was helped by the surgery described. We investigated this surgery for my 19 y/o son, who suffered from very debiliatating grand mal seizures on a very frequent basis.He did not qualify for the surgery because his seizures were generalized and the focal point could not be isolated. He was on 5 different anti- seizure meds, all at the same time and none of them or a combination of them, ever stopped the seizures. He also had a vagus nerve stimulator implanted in hopes of helping him. It may have done so to a small degree but again, did not significantly stop the seizures or reduce them in # or severity. Unfortunately, our story has a very sad ending. He passed away in his sleep during a nap following a petit mal seizure. That was three years ago. We were told his death was caused by "sudden epileptic death syndrome". A seizure hits the autonomic nervous system and stops respirations and the heart. I am devastated as his mom by his passing and I miss him every second of every day. I knew how epilepsy had affected his life in such a tremendous way, I am also a nurse, but I was not prepared to lose him. I have lived with such guilt about not beng able to save him. I did all I knew to do and he had excellent medical care but he was taken away. The only consolation I have is that he doesn't suffer anymore from this awful condition. I know he's happy now and healthy and I know we'll be together again someday. Cherish your children and the love you share with them.

Shannon 4-02-2009 @ 11:14AM

I am so sorry for you lose. The death of a child is never easy. My brother has a vega nerve stimulator and his has been a God send. His condition has improved tremedously. Maybe by you posting and me responding will give some else the idea for the vega nerve stimulator, very few doctors know of this. Well worth looking into. Once again I am so sorry to hear about your son. My daughter has with in the last year been diagnosed with epilespy but thankfully we are on the right track.

SFMomof2 4-02-2009 @ 11:52AM

Thanks for your note. We have a very similar story in that our 14 yr. old Daughter began having seizures at age 5. In recent years these became much more often and the meds have been only moderately affective in controlling her seizures. She suffered 2 significant seizures that didn't stop (both in the middle of the night). We have since installed a baby monitor to listen to her and my husband is up 2-3 times each evening to check on her. She stopped breathing during one episode as we were rushing her to the ER. We understand the frustration before and feelings of anguish afterwards - always wondering what more we can/could do. It sounds like you were a wonderful mother to your son and that is what he needed most. I hope this will give you some comfort in knowing that you are not alone in dealing with these issues.

Ellen 4-02-2009 @ 12:13PM

Tammy,
I read your story and can relate totally. My son Kevin was autistic and was diagnosed with epilepsy at 12 years old. He suffered from general and focal seizures which is quite rare. H was given Depakote and had a blood level done every six months. He suffered from occasional grand mal seizures and had been seizure free for 12 years until that fateful day April 23, 2003. He had a grand mal and fell face first onto his bed into his pillow and suffocated. The coroner told me "didn't anyone ever tell you that this could kill him?"
Well no one ever did. His anniversary is coming up and I miss him more now than ever. I agree with you, don't miss a minute loving them because you just never know. My thoughts and prayers are with you. God Bless and take care.

Art 4-02-2009 @ 6:49PM

Tammy, am sorry to learn about your loss. My Father had epilepsy due to a motorcycle accident. He died during a granmal seizure when I was only 22. My son had his first when he was only 18 months old and they have always been gran mal and generalized. At the age of 20 while on a job training outing, he fell and was badly hurt. A subdurmal hematoma was discovered and I almost lost him. He also developed MRSA and his bone flap section had to be replaced by a prothestic section. For some reason or another ( his doctors can't explain) his seizure activity has decreased. I am now his care provider because I will not allow another risk to him. Thank you for your heartfelt words, I am grateful for every minute we are together. Best of thoughts to you and your family.

Vi 5-05-2009 @ 10:12PM

Tammy,
I am so sorry for the loss of your son. I am a mother of a 14 year old who has been diagnosed with epilepsy since the age of 10. I am actually thinking that he started having epilepsy after a bad virus a few years prior. The fear is always there of him passing out, the helplessness - the worry of him not waking up.
He has been on and of medication, thinking that maybe he has outgrown it - but the seizures come back. It always has been hard for me to put him on the meds again - because of the side effects - the first few days I always felt that I was giving him poisen. I know this not to be true - but the feeling is there never the less. I do realize that not giving him the meds can be potentially worse.
At the end, all we can give them is our love and care and do the best with what we have on hand. Hopefully, by talking and sharing, we will one time come up with a cure or better, less damaging drugs.
I am sorry that you have guilt about not being able to help him. I just wanted to tell you that I have guilty feelings about not doing enough or making basic decisions about his care. You are not alone.
Be well.
Vi

Paulla 4-02-2009 @ 10:23AM

This is wonderful to hear. I am a big fan of Heroes, especially of Greg Grungerg's character, Matt. But more importantly, my 16yo daughter has epilepsy (so far, just the absence seizures, a.k.a. staring spells since age 8). She will be very interested to read this article. Thank you!

Ernie 4-02-2009 @ 10:56AM

A delight to hear that a "chat" about epilepsy has poked its head up.
I am married to a great and very attractive woman whom from the age of 8 found that she had seizures. I say this, as epilepsy does not discriminate. We have 2 beautiful girls that have yet to show signs of the illness, our second child in Jan 09. Boy, was it tough to want to have children if this was the quality of life they were to endure.
Well, here is the sum of it, for us… no one ever asked for this condition and the only 3 major ways that my wife has been able to sustain have been with:
1) family that do not consider the condition as a handicap but an obstacle that can be overcome and that don’t make a big scene about a seizure as life must go on.
2) Yes, the medications are a tremendous help(Lamic/Teg/Carbomez), but the medications are only as good as the Dr. hearing you, listening to you and caring about you and your mix of meds. Dr. Arthur Grant (upstate NY) was that very person for her and the only reason why were able to have children, as in her case, it is hereditary.We live in Calif. All this and only after many visits to many non caring, or somewhat deaf Docs to a very specific patients issues. Thank you Dr. Grant
3) For us, prayer has prevailed in each and every case, as His grace is enough. In others, Courage to you, as this is a tough road and “tough”, only as tough as we might make it. Stress relief has been a big help for her, thus the Prayer and Meditation. Reach out!

Bobby 4-02-2009 @ 12:24PM

Hey guys! I am also epileptic and wanted to tell you about an awesome drug that has kept me seizure free for over a year! It's called Lamictal. My neurologist prescribed it for me and it has changed my life, more than you might know! Check it out and ask your doctor about it.