home | help | contact  

home
about AER
epilepsy
documentary
our words
news
contact

Alliance for
Epilepsy Research

is a 501(c)(3) tax exempt charitable organization.

 

 

our words

 

Below are some of the comments we have received from epilepsy patients, parents, friends, donors, and medical caregivers.  They portray the suffering and dreams, frustrations and hopes that constantly surround all who have epilepsy in their lives.

 

 

 

horizontal rule

Lori's words

ďI have a dream to live a life without medication; I want to live a life of freedom; I want to live without the worry of not knowing when I'm going to have a seizure.  ďYou're afraid to go places by yourself most of the time. When you tell people you have seizures they kinda look at you strange and do everything possible to avoid you. What they donít realize is it hurts and we are just as afraid as they are!!  ďItís even harder to find jobs and trying to keep the job is a trick and a half, but there are some employers who are understanding and work with you.  They say Iím one of the lucky ones and I guess I am and I should be happy.Ē      -Lori S.





"A Dream Come True"

Today I saw a young man who had had seizures all his life until last summer when he had surgery to remove the part of the brain causing the seizures. His life has changed completely, for the better. I asked his mother who accompanied him for this visit to share with me her feelings about her sonís new life. She answered, ďMy dream was to see him without seizures and it has come true.Ē All persons affected with epilepsy share this dream and to some it may have become a distant, unattainable one. Dreams can come true if we remain optimistic and work towards that goal. I encourage you to participate and actively support the Alliance, an organization that is committed to fulfill our collective dream, the defeat of epilepsy.      - Dr. I. O.





Mary's words:

Dear AER,

Thank you for organizing the fantastic picnic on Sept. 28. My son and I felt a tremendous sense of belonging as we mingled with others who share our concerns associated with having epilepsy. What a boost in our self-confidence! We also enjoyed reuniting in a relaxed atmosphere with the great KU medical staff who continue their commitment to excellent patient care.

Thank you again for an informative and fun afternoon. We look forward to adding our voices to AERís push for changes and advancements.      - Mary W.





Words of encouragement

ďPlease accept the enclosed donation on behalf of Holy Trinity Episcopal Church in Brookville, Pennsylvania, as part of our 1996 Outreach giving. It is wonderful that you have formed the Alliance to help further education and medical research of epilepsy, and our church wanted to show our support of your efforts. There are so many unfortunate victims of this disease who certainly need to be ministered to, and we believe your organization will give them something they desperately need more than anything else - hope.

"May God continue to richly bless you and your association as you strive to bring this disorder into the public spotlight and to assist its victims.Ē





Robin's words

My Name is Robin. No, I am not an epileptic but I have a roommate who is. In my past (5th and 6th grade) I went to school with a girl who had epilepsy. She was my best friend. Her name was Monica. We spent a lot of time together on the playground and after school. She had what you call Grand mal seizures. I remember a lot of times she didnít come to school because of her seizures. I felt really sorry for her because there was nothing anyone could do for her. Monica, if you happen to read this, please try to contact me. I miss my best friend still today.

Well, letsí get back to the now. Three years ago I went to South Park Laundromat to do my wash every weekend. Lori was running the laundry at that time. At first I didnít have anything to do with her because I thought she looked like a rough type biker girl. After going there for a while I got to know her and found out that she wasnít a biker but a very sweet, kindhearted person with a lot of caring and love, but no one to give it to.

Still to this day she is by herself, but living with my husband and I in our home. I walked into the laundromat one day and saw that she was very depressed about something. I started my wash and proceeded to ask her questions, being a kindhearted and concerned person like I am. She told me that she was having problems with the people she was staying with and that she was looking for another place to live. I told her I would talk to my husband and get back with her. The next weekend I went to the laundromat and told her she was more than welcome to come live at my house. I had a spare bedroom she could move into. She was excited to hear the news and asked me how much I wanted. We discussed it and worked it out to where she could stay for $50.00 a week and do dishes and vacuum carpets. Her pay back then was only $4.45 an hour. I canít see anyone living on those kind of wages.

After she moved in her life changed drastically. With my help she had her own room. Before she slept on a couch in these peopleís living room. I helped her get a better paying job. She didnít know what it was like to have money in her pocket. Nowadays she is able to pay for the medication she needs, and to go to the store and get other things she needs.

When she has a seizure I take her car keys away from her and send her to bed. She has told me the best thing for her to do after a seizure is to sleep, so I always tell her to go to bed if I know she has had one.

I myself donít look at Lori as being different from anyone else. She is human like all the rest of us. Everybody has a defect in one way or another. I, for instance, was born cross eyed. I went through three surgeries before I looked normal; one at the age of three, then one when I was nine years old, the last one when I was twenty-three years old.

My roommate Lori does have a problem but she is still a person. Sometimes when she has had a seizure she has an attitude problem but I just over look that and know itís because of her seizures. When Lori has a seizure she sometimes doesnít remember anything for up to twenty-four hours. All I can do is be there for her when I can. She experiences what they call cyco-motor seizures. The only way I can tell if she has had one is she acts like she is drunk and stutters a lot when she tries to talk. Lori does not drink alcohol because of her medication. This is how I know.

The reason Lori has seizures is because sometimes she takes her medication late or her doctor changes her dosage. I always try to ask her if she has taken her medication when I can to help her keep her seizures down. Other instances are if she gets stressed out. I think she likes living here because she isn't having seizures very often. I love my roommate and I donít look at her any different from any of my other friends. My opinion is that nobody is perfect.

She has lived with my husband and I going on four years now and I have to say that Lori is the best roommate I have ever had. We have become very good friends. We do things together on weekends like garage sales, swap meets, and shopping. You know how women are: SHOP TILL YOU DROP! Well, Lori experiences that with me quite often. Sometimes we are so worn out we still feel it the next day.

I think that if someone has a friend with epilepsy, be a true friend to them. Take them out and do things with them that they enjoy. All they need is a good friend to stand by their side. Always keep them in good spirits and life will be much more enjoyable for them.

I wish from my heart to all out there that do know someone with epilepsy, donít treat them different. They have a heart too. Please be kind hearted and caring to help them be part of this world. They are people too.     - Robin L.





Caree's Words

It was a typical Sunday afternoon in November; cloudy, cold, a light drizzle falling. We had a house full of hungry, rabid, slightly drunk Chiefs fans. I was feeling the effects of too much excitement, too little sleep and just enough alcohol to make me feel "tipsy". When my speech became impaired I didn't think much about it at first. I started by mixing up a few words within sentences and mumbling. But soon I had gradually lost the ability to speak at all. I would open my mouth, intending to form words but nothing would emerge. My husband, who had been concerned at first, was now on the verge of being panic stricken. He insisted we go to the Emergency Room.

I remember putting on a coat and bidding farewell to our guests, I remember walking out the door of our third floor apartment and descending the first six steps to the first landing....

When I opened my eyes I was lying on a gurney in the Emergency Room, surrounded by nurses and equipment. I was hooked up to all kinds of life support devices. I was bruised and battered from the severity of the seizure and every muscle in my body ached.

Convinced that I was about to die, I panicked and started to hyperventilate. One of the more resourceful nurses retrieved a paper bag and coaxed me to breathe into it while she tried to calm my fears. "You've had a bad seizure honey," she told me, "but it certainly wasn't worth dying about."

The next three days I went through a battery of tests; CT scans, MRI's, arteriograms and X-rays. The day before I left the hospital prognosis came in: I had an AVM (an arterial venal mass) on the left frontal lobe of my brain. It was located near the speech center of my brain, hence the inability to speak immediately preceding my seizure. I was prescribed medication, had my driving privileges suspended, and told to return to the doctor in thirty days.     - Caree R.





Steve' words: M., D.V.M.

Almost five years ago, I was diagnosed with a brain tumor which required emergency surgery. Fortunately, the tumor was benign but it has left me with periodic seizures that require daily medication in order to limit their frequency.

I was out of work for almost two months, regaining my strength. Physically, I recovered rather quickly, but emotionally it was a different matter. Early on I was optimistic that the need for medication was temporary and that at some point I would be "whole" again. But the seizures persisted despite medication adjustments. I have had to accept the fact that every individual who is affected by seizures has to find that balance between frequency of seizures and side effects of over-medication. Dr. Osorio and his staff, especially Jill, have been very helpful in making this emotional adjustment.

This experience has also made me exquisitely sensitive to my own patients. Dogs, and rarely cats, can also be affect with seizure disorder, frequently hereditary, that also may require medication. I have found that my own personal experience has allowed me to identify with these patients in a unique way. I have also found that counseling the owners is an essential element, not only allowing them to better understand the condition, but also to be comfortable in accepting their pet, who despite the need for medication, can remain an important family member ..... and still whole.     - Steve M., DVM





Robert's words:

Epilepsy does not have to be something that you fear! In the early stages of my illness, when I was first diagnosed with epilepsy, I was concerned about when and where the next seizure would occur. I was more self conscious of my epilepsy than I was of the the paralysis due to stroke. I initially found myself attempting to steer clear of letting people know about my illness (But not anymore)!!

The only way people will become educated is for us to come our of the closets and openly admit that we have this illness! There are five million of us affected. If each person tells five people that makes twenty-five million educated and if those twenty five million tell five people makes ..... your get the picture!  Be aware so others will care!     - Robert C.

 

 

horizontal rule

Copyright 2010 - Alliance for Epilepsy Research - All Rights Reserved

 
  about AER ] epilepsy ] documentary ] [ our words ] news ] contact ]