Michael G. Chez and Greg Grunberg Share Insights from “The Care Giver” Series Based on Epilepsy

Shots:

Dr.Chez talked about the challenges faced in epilepsy diagnosis and its various treatment options
Greg spoke about the new online series sponsored by Jazz Pharmaceuticals and how it benefits people with Epilepsy
The interview summarizes the vital role of caregivers in the lives of those living with epilepsy

Smriti: Can we talk about Epilepsy in detail (symptoms, types, epidemiology (US, EU & Row), demographic distribution, etc.)

Dr.Chez:

Epilepsy is a disorder of the brain characterized by the occurrence of at least two unprovoked seizures occurring more than 24 hours apart or by one unprovoked seizure with a high probability of further seizures. Some people make the analogy of an electrical storm in part of the brain and epilepsy is when the brain’s electrical abnormal discharges lead to behavioral changes that are not voluntary on a recurring unprovoked basis.
The clinical types of epilepsy are classified by the International League Against Epilepsy (ILAE) and include focal, generalized, combined generalized and focal, syndromic, and unknown.
Epilepsy is one of the most common neurological conditions, impacting approximately 3.4 million people in the United States, 6 million people in Europe, and 50 million people worldwide.
The greatest number of new cases of epilepsy is generally diagnosed in children and elderly patients. We believe 1:25 people will have at least 1 seizure in their lifetime.
Approximately 1 million people living with epilepsy are resistant to current treatments, with an estimated 160,000 of those patients being pediatric patients. This is also known as treatment-resistant epilepsy.

Smriti: Can we know about “The Care Giver”, what is it and how it benefits people with Epilepsy and their Care givers?

Greg:

I’m excited to be collaborating with Jazz Pharmaceuticals to produce and host the inspirational video series: The Care Giver. As a caregiver to my own son, Jake, who is living with epilepsy, I know how important it is to connect with other caregivers and share stories and experiences, and The Care Giver series provides an avenue to do just that.
The series shows me traveling around the country to help tell the stories of others in the epilepsy community and flip the script to give these caregivers a much-needed day of care. I meet up with patients and caregivers to learn more about their personal experiences living with rare and severe epilepsies, the struggles they’ve had to overcome, and their journeys to find treatment. Our hope is to inspire other families no matter what challenges they are facing because, as we all know, we all have something. Hopefully, through these conversations, we are bringing hope and providing strength in knowing they’re not alone on this journey.
To check out our series please visit www.TheCareGiverSeries.com and stay tuned for new episodes that will be released later this year.

Smriti: How can Greg relate to Epilepsy? Please share the story behind it.

Greg: My oldest son, Jake, has epilepsy, and he was diagnosed when he was 7. Jake is 26 now, and he is doing really well; however, when we first learned of his diagnosis, my wife, Elizabeth, and I didn’t know anything about epilepsy and seizures and there was a time when it was really scary. We felt that we didn’t have anybody to talk to. I quickly realized on this journey of caring for someone with epilepsy that there was also a stigma around it, and not enough people are talking about it. I wanted to help drive efforts to reduce the stigma surrounding epilepsy, improve education about epilepsy, and advocate for the community. That is when I started my podcast called “Talk About It” and my website TalkAboutIt.org to raise awareness and advocate for the epilepsy community. I’m part of this community and I am inspired by everyone I meet each and every day.

Smriti: Can you sum up some of the challenges associated with Epilepsy shared by various Care givers?

Greg:

Sure. I think epilepsy can be scary, damaging, and draining not just for the person experiencing the seizures, but for everyone around them, particularly for the caregivers. Specifically, it can be a very and understandably scary condition because you do not necessarily know the cause of it when it starts. It is also such an unpredictable disease, and I think that's part of what can make it so stressful and challenging for families and caregivers. It’s like an earthquake that can strike at any time. Psychologically, the intense, around-the-clock commitment and fear of the next seizure can make it hard for people and caregivers to enjoy everyday life.
It is crucial for caregivers to not “settle” and “lose hope”; but rather to continue advocating for their loved ones living with seizures and epilepsy and the epilepsy community as a whole in order to empower these patients, fight the stigma surrounding seizures, and bring caregivers together to share information and support. The more we talk about it and share our experiences, the more knowledgeable we all become and that’s empowering for everyone both in and outside of the community.

Smriti: What is the role of a caregiver in the life of people living with Epilepsy? Let us also discuss the role esp. in the pediatric population.

Dr.Chez & Greg:

The role of being a caregiver to a person living with epilepsy is a big one. And it varies from person to person. Caregivers usually play many roles including manager, advocate, educator, and much more. The seizures and their consequences affect every aspect of a caregiver’s world including the physical health, emotional health, psychological health, social relationships, education, employment, finances, and futures of both the caregiver and the patient involved. The constant supervision required from a caregiver for many of these patients can be emotionally draining, highly stressful, and financially overwhelming. The anxiety of when the next seizure will occur is also a major stressor.

It is important to recognize the stresses that come with being a caregiver and try to reduce this stress as much as possible. Caregivers should never feel they are going on this journey alone because they are not. It is also 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’m trying to remind them of this with every amazing caregiver we visit.

Smriti: You are a father, actor & caregiver? For you what were the challenges you faced when you came to know Jake is suffering from Epilepsy and how did you manage it?

Greg:

One of the biggest challenges my wife and I have faced and learned that even other caregivers face, is thinking that you're the only one being affected by this. The journey of caring for someone with epilepsy can feel quite isolating; however, it is important to remember that you are not alone and that there are in fact millions of others going through similar experiences — for both the inspiring and difficult moments. Caregivers connecting to other caregivers is one of, if not the most important way to share experiences that take place when caring for a loved one who is living with epilepsy. Through The Care Giver Series, our hope is to share other caregiver stories in knowing they’re not alone on this journey.
Additionally, it’s important to build a system of support around you and in your community that you can turn to. Whether it’s friends, other family members, or advocacy and support groups, there are resources available to help make your life and the lives of your loved ones much easier. Please take the first step and check out TheCareGiverSeries.com or go to TalkAboutIt.org to learn more.

Source: Canva

About the Authors:

Michael G. Chez

Michael G. Chez, M.D. is director of Pediatric Neurology and Pediatric Epilepsy for both Sutter Medical Group and Sutter Neuroscience Institute. Dr. Chez is a board-certified child neurologist and fellowship-trained pediatric epileptologist who has pioneered research in epilepsy treatment and epilepsy surgery monitoring, and the use of alternative therapies to treat autism. Dr. Chez received his medical degree from the Indiana University School of Medicine and served his internship and residency in pediatrics at Johns Hopkins Hospital.

Greg Grunberg

As a performer, Greg Grunberg is best known for his work in Star Wars, Star Trek, Heroes, and Alias. In addition to his screen work, Greg has written and produced several television shows and films. He has also authored the graphic novel series Dream Jumper for Scholastic. Greg has co-created TalkAboutIt.org, which is dedicated to bringing targeted education, attention, and engagement messaging to important causes and concerns through activating celebrities, industry, and the general public with a goal to get everyone talking about key issues that need more public attention.