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.
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
"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.
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
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
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.
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
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
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
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
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.
Copyright 2010 - Alliance for Epilepsy Research - All Rights