This interview was conducted after Chris volunteered to share his opinions on his experience using the SeizureLink System. While he did receive a free SeizureLink System during the pilot study, he did not receive any compensation for this interview.
Being a parent with epilepsy may mean you need help sometimes—even from your child. This can create a necessity for your children to grow up faster. They need to know what to do if you have a seizure, who to call, and how to help you.
It’s hard to put your child in such a grown-up role, but that is what Chris had to do with his 5-year-old; by teaching him how to call for help if daddy has a seizure. We caught up with Chris recently to talk about his family, how he manages his seizures, and how SeizureLink changed his life. Here’s Chris’ story.
What's your name and where are you located?
My name is Chris and I live in Texas.
What do you like to do for fun?
I like to go swimming, spend time with kids – I love spending time with my kids, they are my whole life. Right now, I’m not working so I take care of them. I am an outdoors person. I like to hunt and fish.
I also volunteer with the Epilepsy Foundation. I am very involved and help out and participate in the different events that are held throughout the year. They hold an epilepsy fun run each year in March that I help with. And I help with their golf tournament too. They also have a retreat center and I volunteer there. I like being able to give back.
What's your epilepsy story?
When I was 5-months-old, I had spinal meningitis and was in the hospital for about a month. I had really high fevers and they kind of “fried my brain.” I only had one seizure while in I was in the hospital at that time. I did not have another seizure until I was ten years old.
When I first started having seizures at age ten, I was having the grand mal (tonic-clonic) type. They mostly happened at night, but some did happen during the daytime. Then from age 15 to 20, it seemed to switch, and I started having more in the daytime and fewer at night.
I am 39 now, but from about age 20-25, I started having a combination of petit mal, pseudoseizures, and tonic-clonics. That’s been going on for the past 15 years. It’s all really been a learning experience.
I was officially diagnosed with epilepsy in 1990. My family and I were on the way back from Corpus Christi. That was the first seizure; when I was 10 years old. I’ve had the diagnosis ever since.
What was life like before you tried the SeizureLink System?
My mother and my wife help keep a log for me. They write down when I have a seizure and we take it to my doctor appointments. That was sort of how we kept track before I used the SeizureLink System.
I had to worry about if I needed help if I had a seizure. I worried about my kids - if I had a seizure while I was taking care of them or doing things with them, would they know what to do. My oldest son, who is 5, has been shown how to call for help if needed. My mother-in-law lives right across the driveway. If she wasn't home, he has been shown many times how to call 9-1-1 to get help for me.
I firmly believe that everyone needs to be trained in first aid, especially in regard to what they should do if someone is having a seizure. It is very important to know what to do, to be prepared. It could save someone’s life.
I did take precautions, warning my kids daily about what they should do if daddy is having a seizure, especially when we are alone, and I am watching them.
In 2003, I used the Vagus Nerve Stimulator (VNS). It was supposed to stop a seizure from occurring. It would detect that a seizure was starting and would send these shocks that were supposed to make the seizure stop. It seemed like it helped for a while, but the last 7 to 8 years it hasn’t seemed to be working as well.
What were the pros and cons of what you tried?
The Vagus Nerve Stimulator worked to a certain extent but there was really nothing before the SeizureLink that actually worked well, especially when it came to recognizing my tonic muscle activity. I have to say, I really enjoyed the trial, the SeizureLink System worked very well for us.
What appealed to you about the SeizureLink System? Why did you think it might be better than what you tried before?
I really like how it alerts caregivers if something is going on. If I start to have a seizure, my caregivers – my mom and wife – get the alert and they can quickly respond and help me. I also like how it has the app that is connected to it. It seems like this system is something that has really been able to track my seizures, much better than in past experiences.
It was very easy to set up and use. When I set it up and sent my mom and wife the invites, they clicked on the link, and they were connected. It was really simple.
What was your biggest breakthrough while using the SeizureLink System?
I haven’t had a full blown grand mal in a long time, but the system has done really well in alerting us when my muscle tightened for a seizure, even small ones. It just amazes me what technology can do these days.
How is life different now, after using the SeizureLink System?
I feel like I’ve had more independence and I can get out more. I don’t have to worry so much while I am alone with my kids and worrying that they will be alone and afraid. I like that it will alert a caregiver immediately, so they can get to me quickly. They can help me, but they can also comfort my kids and help them, so they won’t be as scared.
Before I used the SeizureLink System I felt like I was locked up in a little shell, if that makes sense. Now I have more freedom – a lot more freedom. It feels really good.
And you know, the device isn’t big at all. It is pretty small and not really even noticeable. A lot of people ask if it is an insulin pump, but it really isn’t that noticeable. The other day my three-year-old wanted to know what the band-aid was on my arm. I told him it was my seizure band-aid – because it sort-of is.
That’s the thing, though. The device is that small. It isn’t really as small as a band-aid, but it kind of looks like one with the patches.
What does SeizureLink do for you that other things you tried couldn’t or didn’t?
I like the fact that it alerts my caregivers if it recognizes an event. Before the System, I had to have someone around me pretty much all the time. There was no way to notify anyone if I had a seizure, so I spent a lot of time and energy trying to figure out how to not have a seizure while I was alone or alone with my kids.
This System took that stress away. I like that it alerts somebody and that gives me more independence. It makes me feel like I have some security behind me and I can get out more.
What advice would you share with someone who was thinking about purchasing the SeizureLink System?
I would highly recommend the SeizureLink System because it has really helped me, and I know it can help other people who have seizures too. It is probably one of the best things on the market for seizures. It has really helped me, given me more freedom and I worry a lot less about having seizures. I highly recommend it.
Gain more freedom and worry less with the SeizureLink System.