February 25, 2022

Collin & tonic clonic seizures

The Epsy Team sat down with Collin from South Dakota. A former teacher who has lived with epilepsy for 40 years. Read his story.

Collin’s epilepsy story

I was born in 1976, my epilepsy was caused by a traumatic brain injury in 1980. I was in a farming accident - I was hit by a rock that came out of a machine which hit a nerve - and my skull. It caused a chemical imbalance that causes my tonic clonic seizures. I still get them but they're less severe.

I have penetrating brain injury (PBI), I experience migraines, suffer from a learning disability and have paralysis on the right side of my face. 

I’ve been married for 20 years, I was a teacher of English as a second language for 10 years, I don't let my disability stop me.

Career in languages

In my life I have been a ‘jack of all trades and a master of none’! My wife was going to school as a psychology major, I would hang around with her on campus. There were some South Korean students in the English as a second language (ESL) department. I started communicating with them and this led to my role as an English teacher at the university. 

I speak Lakota, which is a Native American language, not many people speak it. But it did feature in the movie Dances with Wolves. I grew up speaking it with my family and friends, over a third of my class spoke it growing up.

Life with a seizure support dog

In our spare time we like to go for walks with our little support dog, Emmy Lou. She’s a Dachshund and everybody here knows her, when we go to the mall they all look for her when they hear the little jingles of her jacket.

When a seizure is oncoming Emmy Lou will sit on my foot to stop me from going anywhere. After I’ve had the seizure she lies on my chest and licks me to wake me up. I wasn’t financially able to get a support dog, so I went through a foundation - this process was fast-tracked as my brother is in the military.

Read more: Introduction to epilepsy support dogs

What support do you have in place?

I married someone who is very in tune with me, we've been married over 20 years. She’s been a big help. My faith is very important to me, so church is helpful too. I am also a member of several support pages on Facebook.. Finally, I attend a few support groups, as of late we haven't had in-person as much, but I still join online. I also chat and connect with people individually.

Get information: How to find epilepsy support groups 

Finding the right neurologist

I went through several neurologists, the one I have now is really super. Keep looking until you find the right doctor for what you need, if you don't, keep going and don't give up. I’m currently on medication and it doesn't wipe me out like the old one did. Getting enough sleep is very key - it’s a big trigger for me along with drinking enough water and eating the right meals.. If I have a seizure I get super worn out.

Did you know? Everything you need to know about epileptologists 

Experience of using the Epsy App 

I have been on Epsy for about 2 years, I go on there for support and to show people that they're not alone. It's important to not feel like you're isolated and alone. I am trying to break down walls. I use the Epsy App to track my medication every day, and to log my seizures to share with my doctor. The medication reminders have been very helpful for me.

Epsy App users can connect with their epileptologist via Epsy Hub, the platform for healthcare professionals. Find out how to connect with your doctor here.

Advice to other people with epilepsy

My biggest piece of advice is to find someone who works with you and lets you take an active role in your own care. Someone who makes you comfortable in your own skin. Keeping contact with them, and asking questions is super important.

If you don't find the answers that you need, keep hunting, answers are out there and there are other people out there that have those conditions. Ask for help!