Note: I originally started Tri and Stop M.E. when I was training for Cedar Point FullRev 2010 and this post reflects a lot of that. I've left it as I originally wrote it and made any updates at the end.
Thanks for checking out this page, raising awareness about epilepsy and specifically educating the public on what to do in the event they are with someone who has a seizure, is VERY important to me.
Why is it so important to me?
because I, like over 3 million other Americans, have Epilespy.
I wanted to do something a little special on my journey to my first Full distance Triathlon (2.4 mile swim, 112 mile bike, 26.2 mile run). I thought about the causes that are important to me. Then I realized there is a cause that I'd forgotten all about when I really shouldn't have.
I was diagnosed with epilepsy as a freshman in high school. Coming home from X-country practice, I would take a nap before dinner. Upon waking for dinner I started to experience "shakes" or petit-mal seizures. The most entertaining was during dinner when I "threw" peas that had been on my fork across the room. My mom, thankfully, spoke to a doctor friend who recommended we see a neurologist as quickly as possible.
The results of my examination came quickly and I was shocked to hear "you have epilepsy" and being a teenager my first thoughts immediately went to
"how do I keep this from people"
The idea of "I have epilepsy" was something I was ashamed of and I was worried about what people would think. Considering that I continued to run x-country, swim on the swim team, play tennis, etc. (the activities that were the triggers for my seizures) I really should have let some people know what to do in case I did have a seizure! Note: I was extremely lucky in that my seizures were completely controlled on my medication.
So now is my chance to do something to raise awareness to folks that people with epilepsy can do lots of things (dependent of course on the severity of their condition) and dispel many of the myths surrounding the condition.
Facts about Epilepsy
From the Epilepsy Foundation website:
Approximately 3 million Americans have epilepsy, and over 200,000 new cases are diagnosed in the United States each year.
One in 10 people will have a seizure at some point in their lives.
Epilepsy doesn’t discriminate. It affects children and adults, men and women, and people of all races, religions, ethnic backgrounds, and social classes. While epilepsy is most often diagnosed either in childhood or after the age of 65, it can occur at any age.
Instead of listing myths, here are some FACTS about Epilepsy: (taken from: http://www.epilepsy.com/101/ep101_facts)
1. People with epilepsy are seldom brain-damaged.
2. People with epilepsy are not usually cognitively challenged.
3. People with epilepsy are not violent or crazy.
4. People with epilepsy are not mentally ill.
5. Seizures do not cause brain damage.
6. Epilepsy is not necessarily inherited.
7. Epilepsy is not a life-long disorder.
8. Epilepsy is not a curse.
9. Epilepsy should not be a barrier to success.
What I'm Doing About It
No one ever told me to stop running, no one ever told me it was dangerous for me to go swimming, because it wasn't. Luckily my seizures were brought under control with my first drug protocol. And 10 years later, as a newlywed and hopeful future parent, I was retested and found to be seizure free! Now I'm a mom of two and I've been seizure free for the last 15 years.
This summer I'm building on my life long love of sports and attempting a goal I've wanted to reach since I was 10 years old.
On September 12, 2010 I will compete in the FullRev Cedar Point race. I will attempt to Swim 2.4 miles, Bike 112 miles and Run 26.2 miles on the same day; a total of 140.6 miles. A feat that has been said to be the "toughest one day race" in the world. In the meantime I will be talking to folks about epilepsy and raising money to support research to find a cure.
POST Rev3 Cedar Point FULLREV:
My first full distance triathlon went really well and I loved (almost) every minute of it. I loved it so much I decided to train for Ironman Louisville.
At the same time, I increased the number of clients I had for my web development business, my kids were older and needed me more and I increased my training in an attempt to improve my IM time.
You may be able to guess what happened, as I increased the stress in my life and decreased the amount of sleep I was getting, I started to experience "auras". This is not a seizure, but is a precursor to a seizure.
I immediately backed off on the training and rearranged my schedule in an attempt to get more sleep. It worked, I was able to keep myself seizure free, but it was a big wake up call. I am not invincible, and I am and will always be, an individual with epilepsy.
Fund Raising Goal: $1406.00
My Blog Posts about Epilepsy
Seizure First Aid