Byron’s epilepsy story
I was diagnosed at 9 years old, the possible cause was a high fever when I was younger. At 9, I had my first seizure on my mom’s porch, I remember waking up and seeing paramedics. Recently I was at my mom’s - before I rang her doorbell, I stood there and felt weird to be in the spot where it happened. Growing up I was on all types of medications but I was a rebellious kid and regularly skipped my medications, I also never wrote down my feelings or seizures. Telling a 9 year old to do that is hard, especially one that wasn't good in school. If I had Epsy back then that would've made a huge difference.
I have lived with epilepsy for 40+ years, and it has been a rollercoaster ride. In my twenties I wanted to be like everyone else, I wanted to go out, drink and party. In this period I had lots of seizures and did a lot of damage to myself and my body. Recently I had a 5 day EEG, which wasn't fun! Especially during COVID-19, none of my daughters could come to see me. They didn't find anything even though I felt I was having seizures which was slightly frustrating. He told me to buy a camera to record me when I have nocturnal seizures.
Read our tips on safely visiting your neurologist during the COVID-19 pandemic here.
Biggest moments through his story
I've had some great accomplishments with epilepsy. Towards the end of my long career in law enforcement I would have absence seizures while driving. I would get to one spot and have no idea how I got there. I then worked in security but my anxiety and PTSD started affecting me - so I needed to leave. Two years ago I started babysitting. I love children, they keep you young! I have three daughters, and six grandchildren with one on the way. My family is my life - we try to have a big family dinner at least once a week.
One key moment was when my daughter was 6 years old she found me having a seizure. She took care of me and waited with me until it stopped. I had insurance at this point and could take care of myself. Her finding me was a kick up the backside, and I thought to myself “You can't have her finding you like that again”.
The stigma with epilepsy
I think there needs to be a lot more education on it, many people are scared of epilepsy and don't know much about it. They have old fashioned responses, 'it's nothing, you'll be ok - just get some rest'. All these attitudes need to change. There are a lot of people with epilepsy who can live a full life, and have great careers - this needs to be highlighted to young people. They need to know they don't have to live a limited life.
Try this: 10 epilepsy facts to share
His message to others
In the beginning I didn't want to talk about my epilepsy but as I got to my 40/50s I started to talk about it. I try to educate as much as I can. I look back at my life and I know I could've done it better. If I can educate just one person, then that would be great.
My main message is to all the young people out there with epilepsy, educate yourself about this and listen to your doctors. Write down your feelings, your thoughts and your seizures. To the older crowd, if you've experienced this for a while - educate the younger people. You can help and support them on their journey with your own experiences. When I advocate to younger people with epilepsy I tell them about Epsy or if you don't want to use an app, get a notebook and write it down.
How he uses Epsy
The medication reminder really helps, if I'm out of home it's super helpful. I get to write down my thoughts and feelings, which is especially useful for monitoring my headaches. I use Epsy to track my seizures and also for any missed medications. Epsy is great, I recommend it to everyone I talk to, and now it's Epilepsy Awareness Month - I mention Epsy all the time.
My memory has disappeared over the years, when I speak to a doctor Epsy helps me give information about my headaches and seizures. I can actually give him a full account of what's going on. That's the important part for me.
Epsy users can connect with their neurologist through Epsy Hub, the platform for healthcare professionals which can be synchronized with the Epsy app, for improved conversations during appointments.
Share your story with us
At Epsy we love to share our users' stories within the community, if you would like to participate then contact our team at firstname.lastname@example.org.