We wrote to many of our patients asking them to share their stories of living well with epilepsy with the hope that their stories would help inspire others. Thank you to those that have shared your very personal and heartfelt stories. We are pleased to present excerpts from some of the many letters and e-mails we received. Some of the letters have been edited for length, clarity, or grammar. However, we have maintained the writer's voice and story. Please contact us (Subject: Your Story) to let us know if something you read inspires you or send us your story. We look forward to hearing from you.
Debbie – 7 Years Seizure Free
This year I am hitting my 7th anniversary of being seizure free! I'm really doing great and working. Gardening has always been a passion of mine so my job is a dream come true. There is so much to learn and I now have no problem remembering things.
My great life is very full, busy, and fulfilling. Thank you again for helping me to be able to have this great life. Dreams have all come true!! Don't stop doing for others like you have helped me.
Every time I put the key in my car, I say a prayer of thanks.
Thank you so much.
Kathleen – A Whole New Life
Before my surgery at MINCEP, I had seizures all my life since age three. I had an average of three seizures a day. I do not know what happened during any of my seizures, but I was awfully tired after them. My seizures prevented me from doing a lot of things. It was hard for me to keep up in school. I was on so much medication that I kept falling asleep in school.
As the years went by, I had to take more and more medications to control my seizures, but they were not working. In 1990, when I was 35, I was tested for surgery at MINCEP. At the time, they were not able to do the surgery. Ten years later, I was tested again. This time they thought the surgery could help me.
I felt that since the medications weren’t helping my seizures, I was willing to try the surgery. My Dad died two years before this, and some of his last words to me were, “Do something that would make me proud.” I know that he would have wanted me to try the surgery, so I did it for him.
Since I recovered from the surgery, I have not had any seizures, and I take a lot less medicine. I feel much more alert and energetic. I can concentrate a lot better now. One of my hobbies is counted cross - stitch. Before my surgery, even the smallest projects were hard. Now I can do much more complex patterns. I feel like I can do more things a round the house because I do not feel doped up on medication.
Recently, I learned more about how to live more successfully with a seizure disorder because I learned from my doctor that stress could bring back my seizures. Therefore, I have decided not to become stressed. This makes me feel more relaxed and calm, and I enjoy life more.
I feel grateful to MINCEP for helping me so much. My advice to anyone with epilepsy is that if your medications are not working, consider the surgery. It might give you a whole new life, as it did for me. It’s worth it!
Jane – Sister’s Guardian
After my mother’s death in 1990, I became guardian of my sister who has now been a patient at MINCEP for sixteen years. When she was first seen there, she had suffered uncontrolled grand mal seizures for forty years, in spite of having been evaluated at two major medical centers in Minnesota. In just a few months time, MINCEP eliminated one drug, greatly increased the dosage of another, and a few years ago added a new drug. Joanne has been seizure free for fifteen years. For her and for her family it seems like a miracle.
Joanne had not been allowed to attend school from the age of twelve and her whole life was severely impacted by epilepsy. Now, she has an apartment and works in a supported situation in her community. She has a full, happy life we never imagined possible.