November is Epilepsy Awareness month

Many people may not be aware that November is Epilepsy Awareness  month, and the logo is a purple ribbon.

On Saturday, I attended the 2nd Into The Light Walk, a 3 mile walk in New York. It is about Epilepsy Awareness, and people with epilepsy can meetup, share experiences, and raise funds. It was a truly an awesome experience I must say. Never been to such an event, that is purely about  and with people with epilepsy (I  have only known one other person in my life with epilepsy). It was a larger attended event this year, as over 1200 people finished the walk, along with their friends and family, that raised nearly $100000 for epilepsy awareness.

Going along with members of an epilepsy meetup group in New York, I met for the first time (there were 10 of us). I chatted to people about our experiences, the perceptions, and difficulties of the epilepsy condition. We may of had differences in our seizure types, some even had brain surgery…but friendships developed, and contacts made.I expect it will continue to grow.There were people of all ages,genders, and race whom

Next year :March 14th 2014 there is the annual walk in Washington D.C, of which I intend to do.Therefore have a seizure free week, month, year that can lead to a driving license, and no constraints.

 

 

Advertisements

Living with epilepsy from your family, partners or friends perspective!

Yes, It’s not something you think about, oblivious to how other people feel. Since having epileptic seizures from the age of 13, you don’t tend to think  or consider,just how your condition affects your family, friends or loved ones until adulthood anyway.

The anxiety, worry and concerns  they will have if  receive a phone call from school or work , that your son or daughter, husband or wife,etc has had a seizure and is on their way to hospital. I hope he/she is OK, and not  injured they anxiously think as they make their way to the hospital, and possibly not for the first time.It has happened to me on a few occasions, and unfortunately at my wedding, as we were about to leave for our hotel. My parents,naturally were upset as were others, as they didn’t want my seizure to overshadow what was a perfect day.But feeling groggy,sore,injured and tired  afterwards, and being surrounded, comforted by family and guests afterwards at the hotel. It was embarrassing for me…still I have to smile looking back though, you have to.

To put that particular seizure into some perspective, I had been recently perscribed a new drug, on a low dose, combined with what was a stressful day.So it was possibility. My wife came out with a comment a couple of years ago that really hit home, that it can upsetting for everybody or difficult for all concerned to be around a person with epilepsy or for that matter any condition or disease. It’s not something you tend to think about, their emotions and how everybody else is feeling. The first indication that I’m having a seizure, is my head suddenly turns to the right, I spin round, fall over, leading to a full Tonic Clonic seizure. You can then understand it then, if you suddenly turn and look up in one direction for some reason, and get asked, are you OK? It would make anybody anxious and on edge!

Therefore to all families,partners and friends who know a person with epilepsy, I am sure I can speak for everybody that we appreciate the support, and realize it can be as difficult for you.