Thankful Thursday - Aneia's Story

I would like to tell you how Leigh Goldie and Empowering Epilepsy has impacted my life. I was diagnosed with Epilepsy after having my first Tonic Clonic seizure in 2019 at the age of 48. 

As many with people with Epilepsy do, I felt very lost and confused after being diagnosed. I looked for any information on Epilepsy I could find to learn all I could about this disease. I hit one road block after another. Either there was outdated information or no information or information mainly related to adolescent epilepsy. But, not much on adult Epilepsy. I looked in Facebook groups and found many people as frustrated and confused as myself. But, not much information on how to help with Epilepsy.

As my journey continued, I was diagnosed with Medical Refractory Epilepsy. I grew more and more frustrated and depressed. 

Then one day in 2023, I came across a post on Facebook that mentioned Empowering Epilepsy and how it had really helped the person with their Epilepsy so I decided to check it out.

Wow, what a difference it made it my life! Leigh Goldie reached out to me by email then followed up with a personal phone call. She took time to get to know what I needed help with in my Epilepsy journey. She invited me to attend a Zoom meeting geared specifically toward my age group. I admire the insight in Empowering Epilepsy recognizing the importance of how different age groups face different challenges with having Epilepsy. Leigh followed up by meeting with me and sending me a packet with information on my type of Epilepsy. This packet contained so much information that I had been looking for and needed. It helped me to have a better understanding of my types of seizures. It had a vast array of information from the importance of exercising and nutrition in epilepsy to how to keep a seizure journal and questions to prepare for my doctor’s appointments. Prior to receiving this packet, I had no idea about keeping a seizure journal to give my doctor a more clear view of the number and types of seizures I was having. Keeping a seizure journal had never been mentioned to me before.

When I joined the Zoom meetings and was able to learn current and up to date medical information on Epilepsy from leading doctors in the field. I was truly empowered (pun intended) to have new conversations with my doctor on ways to help me. I learned the importance of in having an Epileptologist and a level four seizure center. Leigh helped me find an Epileptologist at a level four seizure center.

Also, through the Zoom meetings I was able to see the faces of, and have conversations with other people with Epilepsy who were and are going through the same journey in navigating this horrible disease just like me. No one understands what it’s like to navigate this horrible disease quite like a contemporary who is also battling it. Tears stream down my face as I’m writing this just remembering how that first zoom meeting made such a difference in my life. Finally feeling like I wasn’t alone anymore in this battle and looking in empathetic eyes with smiling faces. I live in a very rural area in Missouri where there are no support groups for Epilepsy, and I felt so desperately alone and hopeless until I found Empowering Epilepsy. Through Leigh and her Zoom meetings connecting me with other people who are traveling my same journey, I never feel alone and hopeless anymore.

When, I was preparing for a testing procedure and was nervous not knowing what to expect. I attended Zoom meetings and was able to talk with others that had already been through the testing. The ability to ask them questions and receive their reassurance gave me the confidence to go through with the testing. I feel that the tips they gave me also enabled me to get better test results for my doctor’s to treat my Epilepsy.

The brain surgery conferences are valuable in so many ways. They allow people who are potential brain surgery candidates to hear from other people who are post brain surgery and how it has impacted their Epilepsy. People who are post brain surgery may have discussions with others who are also post brain surgery. It gives people the opportunity to hear from doctors on topics involving brain surgery as it relates to Epilepsy.

I wish I could convey to you in writing how finding Leigh Goldie with Empowering Epilepsy changed my journey with Epilepsy for the better. I literally don’t feel like I would be here today if it was not for the support I received and continue to receive from Leigh Goldie and Empowering Epilepsy. Leigh Goldie must have the biggest heart to continue to work so tirelessly in her devotion to help people with Epilepsy. I wish someday to be able to afford to visit Empowering Epilepsy’s main headquarters in person and give Leigh a great big hug. She and the Empowering Epilepsy make the world a better place!

Sincerely,

Aneia

West Plains, MO