Thursday, October 13, 2011

This is a Seizure

I have been trying to capture one of Robert’s seizures on video for a while. I thought it would be one way to raise awareness about seizures and make them (hopefully) a little less scary. I kept waiting for the just the right opportunity to get the “perfect” seizure (which, to me, meant Robert was sitting down, I was able to capture all of it, the surroundings were very calm and serene, my house wasn’t a mess, nothing got broke and no one got hurt).

That’s not how seizures happen. Seizures come on unexpectedly and sometimes things get messy. Dinner plates almost end up on the floor, for example.

Unless I have a camera trained on Robert 24/7, I can’t capture the beginning of a seizure. A young woman  who lives with epilepsy and is on a mission to raise awareness about seizures and epilepsy actually did this by setting up a webcam while she slept which captured her seizures. I commend her for her bravery and for the inspiring way she is living her life in spite of intractable epilepsy.

Robert’s seizures are called Complex Partial Seizures. He doesn’t convulse but he sometimes twitches his right hand or tugs at his clothes. If he has one while standing, he falls backwards (which is why he wears his super deluxe helmet). One time, he yelled during a seizure but what he was yelling about wasn’t clear and he had no memory of doing it. He actually rarely remembers having a seizure unless he wakes up on the floor. Only then will he admit to having a seizure. Otherwise, his standard answer to “how are you, Robert?” is “I’m doing well. No seizures.” There’s no point in correcting him since it makes him happy to believe he hasn’t had seizures in a long while. I don’t see the harm.

I finally let go of the idea of trying to film a seizure in the perfect setting and decided to post a short video of him having a seizure when he was at our house this past weekend. My husband and I were sitting down to dinner with Robert and Robert started to say grace, as he does before each meal. He prays he doesn’t have any more seizures and I think he prays that I go to church more often (he mumbles, so it’s hard to be sure). God, apparently, is ignoring his requests on all fronts.

The prayer was interrupted by a seizure.

The video shows Robert, hands clasped in prayer, head to one side, having a seizure. It shows a dinner of a lot of pasta and canned peaches – don’t judge (to add to this nutritious meal, chocolate ice cream was on the menu for dessert). The video also shows me running to catch Robert’s dinner plate so it doesn’t end up on the floor. Seizures are messy and unexpected and that’s just the way it is.

One thing I learned at the neurologist’s office yesterday is that once Robert is able to respond verbally, then the seizure is over even though he is still in a state of confusion (you’ll see that too on the video). I thought the confusion was a continuation of the seizure since he is pretty out of it. I’m still learning about seizures and epilepsy and hope this helps you learn a bit more about them (and us) too.

By the way, Robert said it was okay to post this.


Unknown said...

Wow... it's such an amazing thing to catch a seizure on camera. Not that they are good, but it's amazing to be able to show the world. And don't worry, God's not ignoring him... it's the world that can't seem to give us all the time of day and do more research!

I will keep Robert in my heart and in my prayers each day. Miracles do happen and I believe in them 110%!

Thanks for the shout out - God bless!

- EpilepsyBlogger

Trish Hughes Kreis said...

I'm with you in educating about epilepsy & seizures. The more people are exposed to them, the less freaked out people will be when they see one "in person." We definitely need more research in order to help the 30% who do not have seizure control with medications or through surgery. Thanks for visiting, Mandy!

Joan Oliver Emmer said...

Trish - this was so different from what I would have expected. In my mind, a seizure is a violent thing, with thrashing and moaning. And that's the whole point, isn't it? That you are trying to educate people as to what a seizure really is. Good work - you're pretty amazing.

Trish Hughes Kreis said...

Joan, Robert's seizures aren't the tonic-clonic (grand mal) seizures which many people picture when they think of a seizure. I wanted to show that seizures are not one size fits all. The response is the same: keep the person safe and do your best to save the tableware! :-)

Kathy Lowrey said...

Wow what a brave young woman that girl is by sharing her video. It's very scary to just purposely put your life out there for all the world to see.

And Robert, oh my! Thank you for allowing Trish to share your video and educate us!

So grateful there were no injuries to either of you.

Trish Hughes Kreis said...

Thanks, Kathy. Yes, Mandy & Robert are both very courageous in their mission to educate about epilepsy and seizures. No injuries to us or our dinner plate! :-)

Judy, The Reflective Writer said...

As others say, this is different than what I might expect. I think grand mal seizures are the kind given the most publicity, especially in tv shows and movies, which might go for shock value.

I commend both Robert and you for wanting to educate in this way. It sounds weird to say this, but the modern world with youtube and facebook and the Internet are perfect for carrying out this kind of education. When else could people share a video of this kind except in a formal documentary?

I thought this blog was particularly sweet because although its primary purpose was quite serious (and you did a great job of explaining this and letting people know what they would see, should they choose to view it), you also kept your kind-hearted sense of humor woven in. (Dinner sounds delicious!)

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Trish Hughes Kreis said...

Judy, Thank you for your kind comments. The movies definitely go for shock value so use the grand mal type to portray seizures. Robert's seizures have changed over the years (most likely due to his medication and surgeries). He had the grand mal type when he was in high school. It was a very difficult time for him but education about seizures has improved over the years. You're right about the internet helping that along!

Unknown said...

Thank you for allowing us the chance to see what you and Robert go through day in and day out. Again, I commend you. But also Robert, for his bravery and willingness to share himself with so many people.

Trish Hughes Kreis said...

Thanks, Dennis. Robert has always wanted to educate people about epilepsy. I just consider myself his spokesperson. :-)