By Amber Kaiser
Karen and I met last summer on LinkedIn. We had a wonderful conversation and have stayed in touch ever since! She has shared some of her story with me and how much she loves her son, Erick, and how they navigate the challenges they have faced living with epilepsy.
Despite the reality of the daily struggles, Karen has kept hope and created an epilepsy organization called South Carolina Advocated for Epilepsy (S.A.F.E.) to connect with her community and help other people and families learning to live with epilepsy by providing education and certification, creating fundraisers, and connecting with them so they don’t feel so alone in their lives. S.A.F.E is also a member of Epilepsy Alliance America, an organization that brings together other organizations, foundations, and groups throughout the U.S. to provide the latest epilepsy education, financial and healthcare resources, certifications and support.
Initially, the doctors were unable to determine why the seizures started. The prescribed medications were not helping to control the seizures, but were causing side effects that impacted his quality of life. Many different medications, combinations of medications, and other treatment options were tried, but none provided a lessening of his seizure frequency or severity.
Erick was then classified as a refractory patient—meaning he was not responding to the medications. This was just the beginning of a long journey involving surgeries, clinical trials, and new medications. I’m happy to say that after 16 years, he has very good control. He used to have over 30 seizures a month and now he only has a few per month.
In our family, we always try to see the silver lining in every situation. While there have been plenty of difficult times on this journey, we’ve had many more experiences that were positive, establishing meaningful friendships and creating lifelong memories.
Constantly worrying when the next seizure will occur, praying through and waiting for it to stop when it does happen, and tending to injuries can certainly drain your stamina and heighten your emotions. I find that reading mystery novels or watching one of my favorite movies help me relax. I’m looking forward to starting a new hobby soon—calligraphy—that I think will really help lower my stress level. Erick really enjoys listening to music and he has 1,223 songs in his Spotify accounts and lots of vinyl albums. He loves watching movies, too!
I started S.A.F.E. 3 years after Erick was diagnosed with epilepsy. There were no community resources in our state that focused specifically on people with epilepsy and their families. After hosting a fundraising event with our local ECHL hockey team, I was encouraged to start a nonprofit that would address the needs that were lacking in South Carolina. We are now a state-wide organization! Our mission involves bringing advocacy, education, and inspiration to South Carolina’s epilepsy community and has become my personal mission. Helping people that deal with epilepsy is my passion! I also consider it to be my own form of therapy, ensuring that this will always be an important part of my life.
Be sure to communicate with your epilepsy team on a frequent basis. Each epilepsy diagnosis is unique, and you may not experience the same type of seizure, side effects of medications, or require the same treatment as other people with epilepsy. Don’t be afraid to ask questions, or tell your team about a treatment type you recently learned about. If you don’t feel you are receiving the best care, or just want confirmation of a diagnosis, get a second opinion. YOU are always your best advocate!
It’s simple to learn and easy to perform when a person is having a seizure—it can even save their life. S.A.F.E. has free, online training that anyone can take. We can also provide the training in-person. We encourage all children and adults with an epilepsy diagnosis to talk with their clinician and put together a seizure action plan. People with epilepsy and their families need to share the diagnosis with friends, employers, and others in their life. Be sure they know seizure first aid and how to help when needed. Providing copies of the seizure action plan will ensure people in your life can assist you in the best way possible.
Knowing Erick is wearing the Neureka ring while sleeping gives me peace of mind that I will be alerted if he needs me. Erick sleeps better knowing that if he can't alert me, the ring will. I now have better quality of sleep on a regular basis, which enables me to be a better caregiver during the day. Neureka Sleep has truly improved our quality of life in many ways!