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TOPIC: Growing up with Epilepsy

Growing up with Epilepsy 13 years 3 months ago #114

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when i first started have epilepsy as a young girl my life was being turned around my life had to change and this word epilepsey was still in the mid 1970s a word to be quiet,in my experiances once the word got out i was at the age of 8yrs old found myself being kicked out of school,they said they didnt want any responceability of an epileptic child,some of the school staff seemed to still carry that stigma that we who suffer fits are evil or a witch,

i grew up never learning how to swim or even had my first bike,i was not to have a bath alone i had to be watched,just imagin how this would be for other children then and now although the stigma has now gone a thing of the past most of us still experiance something in their lives were they have or feel they have been miss judged and unfairly mistreated,tell us of your experiances and how you felt during those times,did you feel pushed out not belonging or other,

if anyone has a story or problem regarding how to make life easier for a sufferer of epilepsy please get intouch,

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Re:Growing up with Epilepsy 11 years 7 months ago #13326

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I GREW UP WITH EPILEPSY TOO SICE 14 IV'E HAD EPILEPSY
GRAND MALS TO PETET MALS
THERE WAS A TIME I WAS TOLD I WAS POSESED BY DEMOMS
HOW DO YOU LIVE GROWING UP WITH EPILEPSY
JUST ONE DAY AT A TIME !
THATS HOW YOU GO ON
BEAR

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Re:Growing up with Epilepsy 11 years 7 months ago #13838

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Growing up with epilepsy
(I FOUND THE LESS STRESS THE LESS SEIZURES )
(I LEFT MY STRESS BEHIND BE IM HAVING FEWER SEIZURES)

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Re:Growing up with Epilepsy 9 years 5 months ago #33002

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At first with all of us we are all watched doing everything
I WAS TOLD. I WAS POSSESD BY DEMONS BECASE MY FAMILY DID NOT
KNOW WHAT TO DO . WAS NOT DEMONS WAS EPILEPSY I MOVED FROM
RENO NEVADA TO COOSBAY,OREGON
MOVE RELAXED CALMER LESS SEZURES
MORE STRESS MORE SEZURES
BEAR

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Re:Growing up with Epilepsy 9 years 5 months ago #33003

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I HAVE ALLWAYS HAD BIKES I LEARNED HOW TO BUILD BIKES
FROM MY BROTHER . HE NEVER SAID ANYTHING BUT I WATCHED HOW TO DO
IT SO LEARNED .I REBUILT MY BACK BRAKES YESTERDAY I HAVE NOT
HAD BRAKES FOR ABOUT A MONTH NOW
BEAR

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Re:Growing up with Epilepsy 9 years 5 months ago #33021

The story with me is I was born with CP meaning Cerebral Palsy. Mine is mild so I'm able to do most things for myself. At age 15 I was swimming in the pool where we lived & the wall of the pool was on my left side. From what people tell me that I hit the wall with my head just above my ear. That was my first seizure. I really never had the bad ones. So now with 2 disabilities it was hard for a teenager then. As time went on I noticed I had a problem with my hearing on the left side. So I got a hearing test & found out from when I hit my head I damaged either my inner or my middle ear. I lost about 75% to 80% hearing. I now wear a hearing aid.
It's not that hard if you just take care of yourself first!

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Re:Growing up with Epilepsy 9 years 5 months ago #33022

The story with me is I was born with CP meaning Cerebral Palsy. Mine is mild so I'm able to do most things for myself. At age 15 I was swimming in the pool where we lived & the wall of the pool was on my left side. From what people tell me that I hit the wall with my head just above my ear. That was my first seizure. I really never had the bad ones. So now with 2 disabilities it was hard for a teenager then. As time went on I noticed I had a problem with my hearing on the left side. So I got a hearing test & found out from when I hit my head I damaged either my inner or my middle ear. I lost about 75% to 80% hearing. I now wear a hearing aid.
It's not that hard if you just take care of yourself first!

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Re: Growing up with Epilepsy 8 years 11 months ago #36974

I WAS GIVEN EPILEPSY WHEN I WAS 19 THROUGH AN OPERATION THAT WAS GIVEN A 5% CHANCE OF GIVING OUT EPILEPSY AS AN AFTER EFFECT. THIS WAS IN THE YEAR 1991, IT IS NOW THE YEAR 2011. I WAS HAVING UP TO 200 FITS A WEEK, THAT WAS WHEN I WAS ON ALL MY TABLETS. ONE TIME WHEN I CAME OUT OF HOSPITAL I SAID TO MYSELF, RIGHT THAT IS IT I AM NOT TAKING ANYMORE OF MY TABLETS AND DO YOU KNOW WHAT? I WENT FROM HAVING 200 FITS IN A WEEK TO 6 IN A YEAR, AND NOW THE LAST FIR I HAVE HAD IS OCTOBER 2010. NOW I DON'T SUGGEST THAT YOU ALL STOP TAKING ALL YOU TABLETS LIKE I DID BUT IT MAKES YOU THINK WHAT ARE THE DOCTORS GIVING YOU, DOESN'T IT?

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Growing up with Epilepsy 12 hours 54 minutes ago #72348

I know at a youth group retreat I was questioned whether I could do an activity in the water since I had epilepsy. I felt like I didn't belong or was treated like a normal person and felt like my condition was making people scared and worried even when they had known me forever and that it changed their opinion of me. I also have been indirectly teased by people making seizure jokes.

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