Patty Horan, Consumer Reviewer for the Epilepsy Research Program

Posted November 27, 2024

There's no School to Become a Caregiver
Patty Horan, Consumer Reviewer for the Epilepsy Research Program

It's been such a rewarding experience and I’m so glad, I've met so many wonderful people, and I feel like I have a real impact on the panel, and where the research goes. My husband was injured, suffered a gunshot wound to the head, and I got the call that nobody ever wants to get. And, um, I became a caregiver. And I had to fly from Washington state to Bethesda Naval in Maryland to his bedside.

There's no school to become a caregiver. There's nothing to prepare you for this, at all. It’s overwhelming. And it sets up, kind of, this narrative and mindset in the beginning that sometimes we carry forward, which is awful, because caregivers, going forward, can be crushing it. But there's always this anxiety of the shoe to drop, the next thing to come up.

So, you live never again in a relaxed state. You're always kind of in this intense state of anxiety.

And thankfully, I was with him in the hospital room that night. It was a rolling seizure situation, and they had to intervene with a drug called Dilantin in order to stop the seizure, which is called status epilepticus. And if this happens for too long, brain damage starts setting in or you, you die. That was our first introduction to epilepsy in the middle of the night, in this rehab hospital in Chicago.

He's still working on his ability to speak, his ability to read and write. And he's in groups and he's still in physical therapy, keeping his body strong.

And I feel like the research, just, it feels like we're on the precipice of something. Also, we are getting more research. The things that will help people in their daily lives, to, to see, like the things that are like monitoring devices, in clinics that can diagnose better, or things that actually people can wear or do or participate and to help quality of life.

And I just would invite people to come and study and be part of this program, because 1) it’s very exciting and there's so much to be learned, and 2) because there's not a more deserving population. There just isn't. I just think this is a great space. The people here are very supportive and, and there's not a better mission.