Always Advocate for Yourself

I’m Nicole, and I am 1 in 26. I was diagnosed with epilepsy two years ago at the age of 45. I have right and left temporal lobe focal seizures, most of which are nocturnal.  I am a mother of four children, and I honestly did not understand what was to come after being diagnosed. After visiting a few neurologists, I realized I needed to research and advocate for myself to find the neurologist who worked with me and whom I felt comfortable with. I just did not think I could have epilepsy at my age. I have since educated myself and learned that this often-silent disease has no age limit. I am medication-resistant and recently had RNS device surgery. I’m being patient with this process. 

I have struggled with going out in public with the fear of having a seizure. I make sure I’m with someone in my family or circle of friends that have been educated about epilepsy and knows what seizure signs to look for and how to assist me. When I’m exhausted, I rest. I always plan my weeks to prepare for any upcoming events. This may require not doing simple tasks (e.g., cooking, laundry, etc.) to save my energy so I don’t miss any important time with my children. I’ve learned to write a lot of notes. Specifically, reminders to take medications, shower, and even to eat. I rely on setting alarms throughout the day to stay on task. The alarms on my phone help tremendously when I randomly fall asleep throughout the day.

Since being diagnosed, I feel a strong need to educate people and spread the word to help people understand epilepsy awareness. Although I may look fine on the outside, it takes a lot of energy and planning to do the simple things in life. I have a new outlook on life, and I don’t take any day for granted. I’m looking forward to any progress I may receive with the RNS device.

I feel that so many people who do not personally have or have friends and family with epilepsy do not understand the full extent of it. It’s not just the seizures; it’s fatigue, medications, hospital visits, surgery, tests, and doctor appointments. Some days I may seem okay, and others I don’t. Being diagnosed later in life made me want to share my story and help educate others who may be in the same situation.

I’ve also participated in the 65 Mile Walk Challenge in the past when I was able to. As a result, I’ve been able to help raise money for the Epilepsy Foundation. The Epilepsy Foundation has continued to keep me educated and has provided me with a lot of useful tools and resources as I go through my journey.

Always advocate for yourself to find the treatment and support you deserve. Do not let epilepsy define who you are. You are not alone on this journey.