• osted by Richard Hicks on November 14, 2009 at 11:28am in About the Site
• View Discussions

November is National Epilepsy Awareness Month



Dear Friends, Ricky is a hero I met on twitter. His powerful life lessons educate and inspire. Please read this compelling and powerful story. More must be learned about this health issue. Please read this today. Thank you.



Love,

kathy



This is my story about epilepsy:

My name is Richard Hicks, I am a son, a brother to 3 sisters and 2 brothers I am also an uncle.
And I have Epilepsy; I was born with epilepsy, diagnosed a few weeks after birth. As a child, I knew I had epilepsy, but it did not bother me. I had childhood friends like everyone else. I just thought was a bother to have to stop playing a game and run inside to take my medication. The fact I had epilepsy really hit home when I turned 15, and like every teenager wanted to learn how to drive. When my neurologist said "No, you may never be able to drive unless you go one year seizure free". Which I had never done. I thought it was hopeless. I figured if I can not drive why bother taking my medicine. I would lie about taking my medication. But that just made it worse... Having seizures, at one point they thought my mother was not giving me my medicine. I was taken away from my mother for my stupidity. I finally told them I was not taking and I was just hiding my medicine.

After that I start taking my medicine, BUT if I did miss a dosage it was but only because I honestly would forget. Or I would be out later than expected and miss the scheduled time to take my medication. My seizures did become less and less frequent. But we still needed to try different medications, different dosages, fine tune it.

I am 41 years old now; I have enjoyed 17 months seizure free as of October 27, 2009. And I now share my life experiences with epilepsy. And yes I do remind others to take their medication, even though they may not like the side effects. IT IS VERY IMPORTANT TO TAKE YOUR MEDICATION! Learn from my stupid mistakes, take them faithfully. Help your Doctor, Neurologist or Epitologist by keeping a detailed Epilepsy Journal. Ask questions. If you do not understand ask your doctor to explain in terms you understand.

Now there are a few myths about epilepsy I would like to help clear up like:

!) Not all seizures involve violent convulsing, flopping around on the floor like a fish out of water
Fact: There are 7 different types of epilepsy and 40 different types of seizures
Myth: you can not "catch epilepsy"
Fact: Epilepsy can occur from, birth, virus, severe head trauma, from not wearing a safety helmet while riding a motorcycle, skateboard and rollerblading. Epilepsy can be caused by drug and alcohol abuse also.
Myth: When a person has a grand mal seizure, (violent convulsions) you put something in their mouth
Fact NEVER try to do so, you may chip teeth of the person having the seizure or lose a finger or two.
Myth a person can swallow their tongue during a seizure
Fact it is physically impossible to swallow your tongue. Although I know some people who I wish would just to shut them up, the gagging noise you hear is the muscles in the throat expanding and contracting due to the convulsions.
Myth Restrain the person having the seizure
Facts never restrain the person having a seizure. Roll them on their side, place a pillow or coat under their head move tables or chairs out of the way for safety
Myth All people with epilepsy are mentally impaired and slow learners
Fact Very untrue, there are politicians, musicians and actors, authors who have epilepsy.
Myth During a grand Mal Seizure an alien immediately pops of the chest of the person who is having the seizure
Fact Aliens do not immediately pop out of the chest. It takes several minutes so you have time to run...,
Ok I made that up just to show that people with epilepsy do have a sense of humor.
Epilepsy has never been linked to acts of violence after a seizure as portrayed in Television shows and Movies.
I hope this will help others with epilepsy learn from my mistakes. And help those without epilepsy understand it.

My name is Richard Hicks, I am 41 years old. And not afraid to say I have epilepsy, and I am an epileptic. I have epilepsy, but I do not let epilepsy have me, and neither should you!

• osted by Richard Hicks on November 14, 2009 at 11:28am in About the Site
• View Discussions

November is National Epilepsy Awareness Month



Dear Friends, Ricky is a hero I met on twitter. His powerful life lessons educate and inspire. Please read this compelling and powerful story. More must be learned about this health issue. Please read this today. Thank you.



Love,

kathy



This is my story about epilepsy:

My name is Richard Hicks, I am a son, a brother to 3 sisters and 2 brothers I am also an uncle.
And I have Epilepsy; I was born with epilepsy, diagnosed a few weeks after birth. As a child, I knew I had epilepsy, but it did not bother me. I had childhood friends like everyone else. I just thought was a bother to have to stop playing a game and run inside to take my medication. The fact I had epilepsy really hit home when I turned 15, and like every teenager wanted to learn how to drive. When my neurologist said "No, you may never be able to drive unless you go one year seizure free". Which I had never done. I thought it was hopeless. I figured if I can not drive why bother taking my medicine. I would lie about taking my medication. But that just made it worse... Having seizures, at one point they thought my mother was not giving me my medicine. I was taken away from my mother for my stupidity. I finally told them I was not taking and I was just hiding my medicine.

After that I start taking my medicine, BUT if I did miss a dosage it was but only because I honestly would forget. Or I would be out later than expected and miss the scheduled time to take my medication. My seizures did become less and less frequent. But we still needed to try different medications, different dosages, fine tune it.

I am 41 years old now; I have enjoyed 17 months seizure free as of October 27, 2009. And I now share my life experiences with epilepsy. And yes I do remind others to take their medication, even though they may not like the side effects. IT IS VERY IMPORTANT TO TAKE YOUR MEDICATION! Learn from my stupid mistakes, take them faithfully. Help your Doctor, Neurologist or Epitologist by keeping a detailed Epilepsy Journal. Ask questions. If you do not understand ask your doctor to explain in terms you understand.

Now there are a few myths about epilepsy I would like to help clear up like:

!) Not all seizures involve violent convulsing, flopping around on the floor like a fish out of water
Fact: There are 7 different types of epilepsy and 40 different types of seizures
Myth: you can not "catch epilepsy"
Fact: Epilepsy can occur from, birth, virus, severe head trauma, from not wearing a safety helmet while riding a motorcycle, skateboard and rollerblading. Epilepsy can be caused by drug and alcohol abuse also.
Myth: When a person has a grand mal seizure, (violent convulsions) you put something in their mouth
Fact NEVER try to do so, you may chip teeth of the person having the seizure or lose a finger or two.
Myth a person can swallow their tongue during a seizure
Fact it is physically impossible to swallow your tongue. Although I know some people who I wish would just to shut them up, the gagging noise you hear is the muscles in the throat expanding and contracting due to the convulsions.
Myth Restrain the person having the seizure
Facts never restrain the person having a seizure. Roll them on their side, place a pillow or coat under their head move tables or chairs out of the way for safety
Myth All people with epilepsy are mentally impaired and slow learners
Fact Very untrue, there are politicians, musicians and actors, authors who have epilepsy.
Myth During a grand Mal Seizure an alien immediately pops of the chest of the person who is having the seizure
Fact Aliens do not immediately pop out of the chest. It takes several minutes so you have time to run...,
Ok I made that up just to show that people with epilepsy do have a sense of humor.
Epilepsy has never been linked to acts of violence after a seizure as portrayed in Television shows and Movies.
I hope this will help others with epilepsy learn from my mistakes. And help those without epilepsy understand it.

My name is Richard Hicks, I am 41 years old. And not afraid to say I have epilepsy, and I am an epileptic. I have epilepsy, but I do not let epilepsy have me, and neither should you!

Hippocrates And Epilepsy

Hippocrates  once said about epilepsy;

“It is thus with regard to the disease  called sacred: it appears to me to be in no way more divine nor  more sacred than  other diseases “. Hippocrates knew that Epilepsy  was neither divine nor demonic  spirits causing seizures. He tried  to teach others the truth I guess one could  say he was the first  advocate for Epilepsy Awareness.  Unfortunately this was a  lesson  that had fallen upon deaf ears for many centuries. Even into the  early  1920’s people with epilepsy were not allowed to marry or  have children. Sadly  society imposed mandatory sterilization on  those diagnosed with epilepsy.
With that  in mind, people with epilepsy chose not to speak of  epilepsy.  Families kept it hidden, like a dark dirty secret of which no one  would speak. As a matter of fact, my mother’s uncle had epilepsy.  Even I am  guilty of it to a small extent. I wouldn’t talk about  epilepsy unless somebody  asked me why I took medication. I would  briefly say “I have epilepsy”. If I was  asked about epilepsy I  would give a quick answer and leave it at that

I realize now by not talking about my epilepsy I was not informing  others and helping them to understand what it is and how it affected  me. My  silence made me a target for bullies. I was called shaky,  drug addict and a drug  dealer. If I had spoken with friends and  other students in my class about my  epilepsy I believe they would  have understood my illness.  Maybe the other  students in my class  would have helped me. It may not have stopped the bullying,  but  maybe, just maybe it would have made the bullies stop and think.  If I would  have told them about the times I wound up in the hospital,  bitten my tongue,  popped blood vessels in my eyes from severe  grand mal seizures. How painful it  was recovering from the miserable  headaches after each seizure. Maybe it would  have tapped into  some part of their decency. But like I said, some bullies just  harass  people because they are different. For a bully, no particular reason  is  necessary.

Fast-forward about 20 years  or so when I discovered a  site called YouTube. I watched videos  of funny accidents, homemade movies and  old commercials. Out of  curiosity, I searched for epilepsy videos. I don’t know  what made  me do it. To my surprise I found a few videos about epilepsy created  by foundations and groups. I found other videos from people just  talking about  epilepsy. I created an account, and made my debut  video. It was a bit awkward,  but I just took a deep breath and  started talking. With a lot of awkward  silences and fumbling for  words I did it. I posted the video. To my surprise I  had comments  and messages. Some of the messages were from people asking what  medications and what type of seizures I have. It was not long  before I  discovered found out my videos placed number forty-two  as most subscribed for  the week. And I had comments telling me  how nice my videos were, telling me I  was brave, courageous for  making the videos. I was not making these videos for  accolades  and praise.

And yes I did get hateful comments. I remember  one delete don’t repeat “comment” in particular “I hope you  have a seizure and  die.” I tried to reply but the account was  deleted. This is typical of a  cyber-bully. They create an account,  delete it and repeatedly make new  accounts.  However I did get  a lot of comments from people who didn’t have  epilepsy telling  me how much they had learned. That provided just the incentive  I  needed. I like the idea people cared enough to learn about epilepsy.  And it is  great therapy to just talk about epilepsy even if it  is just in a video and  nobody comments. Being able to share the  fact I went without a seizure for a  certain period of time, getting  support congratulating me, and then offering  support when I did  have a seizure.

My advice is to  not hide or be ashamed of the fact you have epilepsy.  There is  always somebody willing to listen. All you have to do is just take  a  deep breath and start talking. If you are being bullied face  to face that is  upsetting. But cyber bullies think they have an  advantage by remaining unknown.  They just show by hiding behind  a computer remaining faceless that they are just  cowards getting  their giggles at the expense of others. There is one important  factor  they keep repeating the same hate filled insults, just worded  differently.  I say ” if you are going to insult me be original, otherwise you  are just boring me.”

This is dedicated to anyone with  or without  epilepsy who have been bullied And dedicated in loving  memory those who have  taken their lives due to bullies. In person,  or online please remember there is  always somebody willing to  listen. : Epilepsy is a community disease and not one  to keep  to oneself. I strongly suggest to talk to your parents, trusted  members  of the community, friends, and even the law if necessary.

stuff