Shining epilepsy star: Epilepsy surgery and Mark Jones
Mark Jones is this issue’s shining epilepsy star for all the help he gives to others with epilepsy by regularly sharing his experience of living with epilepsy since he was a baby and how life changed for him after having epilepsy surgery. He is tireless and always willing to speak to others about his experience with epilepsy and epilepsy surgery.
Mark Jones was diagnosed with epilepsy when he was three months old. In 1999 after having a particularly frightening experience with one of his seizures he decided that he was going to go through with surgery. Mark has since been seizure free and his life has change dramatically. Committed to helping others with epilepsy and spreading awareness, he continues to participate in support groups and shares his knowledge and support with others. He has also filmed a testimonial which has aired on television and raised funds for the Epilepsy Foundation. And that’s not all, Mark has great plans in mind for the future to continue raising awareness.
1) Do you remember how your parents reacted when you were diagnosed with epilepsy and what difficulties they faced?
I don’t know how they reacted to my epilepsy because I was diagnosed at 3 months old. I never asked about how they felt, all I knew was that they supported me in everything I’ve done in life and still do.
2) What difficulties did you face living with epilepsy and trying to control your seizures?
I wasn’t able to do anything that would exert me like physical activates such as basketball, baseball and football. I wasn’t allowed to eat certain types of foods, mainly foods that were high in sugar.
3) How did you feel about surgery when you were first introduced to the idea?
I thought the doctors were crazy to suggest it. I didn’t want to think about someone cutting my head open.
4) What happened to change your mind from not wanting surgery to wanting surgery?
My seizures had gotten really bad; I was having seizures every day. I had two really bad seizures. I ran into the corner of a brick wall and into oncoming traffic.
5) What was the recovery like after the surgery?
I felt like a new man. I did things I never thought I could do. Walk in a straight line, reacted faster to things, workout in the gym, eat whatever I wanted, especially chocolate and other sweets.
6) How have you felt since the surgery (and have you experienced any seizures since)?
I noticed my reaction time was quicker, my confidence level went up and my eyesight was clearer. I finally feel like I can do anything. I haven’t had a seizure since my surgery in 1999.
7) How is your life different now compared to before the surgery? (Work, driving, relationships, socializing, etc?)
My life has turned around 180 degrees. I finally got a note from the doctor stating I can do anything. I never thought I would be driving and now I drive my own car. My relationships got better in many ways with friends and my girlfriend. Now I could drive my date to a restaurant or movie instead of having her pick me up. My job was able to give me more responsibilities and I was promoted. It has also given me confidence in planning my future. The picture of me in this article is of me in Puerto Rico on my honeymoon-the happiest day of my life.
8) What have you been doing since to help others with epilepsy?
I’ve done a radio talk show and I’m on commercials as well as the internet discussing my epilepsy and how I made a full recovery. I go to my local epilepsy support group and patient educational conferences whenever I can so I can talk to people with epilepsy about my experience.
Also, you filmed a testimonial that has been shown on TV, was this part of your effort to help educate others?
Yes the testimonial and TV show was done to help people and give them hope.
9) What do you want to give and do for others with epilepsy?
I want others to know that they should never give up.
10) What is your advice for people who are currently living with epilepsy?
My advice is to tell others not to ignore and pretend their epilepsy doesn’t exist. The sooner you get help, the sooner you will get better. Don’t let epilepsy get you down. Don’t Give Up.
11) What plans do you have in the future to keep helping raise epilepsy awareness?
I would like to write a book about living with epilepsy and spread awareness.
