Thankful Thursday - Adam's Story

My name is Adam, and I started having epilepsy about 25 years ago. That means I was 25 years old when I woke up in a hospital and was told I have epilepsy. I am 51years old now.

Although I woke up in a Level-4 Epilepsy Center, there was no one to tell me what to do. I was given some medicine. I did not know what to do, so I thought that brain surgery would be easy and that after the brain surgery I would be done with epilepsy. No one said there was only a chance it would work. It did not.

During this time, I stayed at home because either I had seizures or I was scared I would have a seizure. I stopped working due to the seizures, and I took care of my young children while my wife went back to work. I was changing my medicine all the time, and my memory and thoughts were horrible. Most of the time, my children helped me during the seizures.

My epileptologist and neurosurgeon told me about the VNS. I then got the VNS implant because my doctors told me to. One year later, my epileptologist and neurosurgeon told me to remove the VNS, as it was not helping.

Then my doctors told me to try a deep brain stimulator. My doctor told me the battery in my chest would need to be replaced in about five years. It turned out I needed to replace the battery about every ten months. After about eleven chest replacements, I asked if there was a replaceable battery so I would not need chest surgery. They said no. I called MEDCO and spoke to them to see if they had replaceable batteries so I would not need to have more chest surgery. They said yes.

I never had anyone to talk to about different medicines or surgeries. I was dealing with all of this by myself. Then I found out about Empowering Epilepsy.

Every month I talk with other people dealing with epilepsy. I am learning more by talking with other people with epilepsy and with Empowering Epilepsy. Medicine works for some people and not others. Surgeries work for some and not for others. Learning what time to take my medicine during the day also helps. Everyone in the Empowering Epilepsy support groups supports each other.

I have friends, and I had a wife, now ex-wife, who do not really know what it is like to have epilepsy. People in Empowering Epilepsy do know. I wish I had met Leigh Goldie and Empowering Epilepsy twenty years ago.

Empowering Epilepsy sent me the patient education program. There is so much information about everything from anti-seizure medication to epilepsy and memory and SUDEP. I try to share it with everyone I can. My family learned more about epilepsy from the Empowering Epilepsy patient education program than from my doctors.

Because of Leigh Goldie and Empowering Epilepsy, I now see doctors at Cleveland Clinic. They have learned more about my seizures than any doctors in the last 25 years. I did not even know about some new tests to see where in my brain the seizures start.

Without Empowering Epilepsy, I would probably still be using my old doctors. My depression would be in worse shape without talking to Empowering Epilepsy.

Adam

Atlanta, Georgia