The alison william pinsley story

National Seizure Disorders Foundation http:nationalseizuredisordersfoundation.org

Alison Williams Pinsley

My Journey to a New Life

THE EARLY YEARS

This is the story of how my family and I adjusted to a situation of which little was known

for many years. I want to thank them for all their love and support through the years.

I was born in 1958 and at the age of 14 months, due to a high fever, I suffered a

convulsion. My parents rushed me to the local medical center, where no reason could be

found for the high fever. They call this a “febrile seizure”. The doctors told my parents I

would be fine and sent me home.

I began having recurring seizures shortly after that. Doctor after doctor told my

parents that there was nothing wrong with me, and I would most likely outgrow the

seizures. Nobody could tell them anything and no medication was given to my parents to

give to me. The doctors never saw me in a seizure, so they though my parents were

imagining things.

At about the time I was ready to start swimming lessons at the age of 8, my

mother practically had to force the pediatrician send us to a neurologist. By some stroke

of luck, I had a seizure in his office and they diagnosed me at that point with epilepsy.

What I had been experiencing finally had a name. I was referred to Columbia

Presbyterian Medical Center, in New York City, to a neurologist, whose name was Dr.

Gold. I was put on medication, which included Dilantin, Phenobarbital and Mysoline. I

would stay on these medications for 5 years. I was continually monitored medically for

my epilepsy with frequent blood tests, to measure the levels of the medications I was on

and to make sure that there were no side effects. The Phenobarbital and Dilantin left me

with many side effects. The Dilantin had an adverse growth affect on my gums, causing

many problems. My gums bled easily for they were constantly swollen. I had to have

oral surgery on my gums twice. I also remember the dentist telling me that he had a hard


time working on my teeth, because they bled all the time. I had a toxic effect from the

Phenobarbital which made me sleepy much of the time. I was still too young to

understand what epilepsy was and why the seizures occurred.

I was an uncontrollable child because of the seizures. I was too young to

understand what was happening to me and why it was happening. I was taunted and

teased by those who did not understand and was often the only child on the playground

left by myself, because nobody wanted to play with me. The parents were telling their

children that I was different from them, and they were afraid that whatever was wrong

with me was contagious. That shows you how much they really knew in the 1960’s about

epilepsy and its’ causes.

MY EDUCATION

In kindergarten, I would often ruin the other childrens’ art projects and act out, as

a means of getting attention. According to my mother, I came home from school one day

and announced to them that I was “quitting” kindergarten. There was only one

Kindergarten teacher who would accept me in her class.

I had an understanding teacher in the 2nd

grade that encouraged me, stood by me

and became a life-long friend until her death in 1991. Only after her death, would I learn

from her son, that her granddaughter had suffered from epilepsy. I finally understood

why she had been so patient and understanding with me. She had never shared this with

me during the entire time I knew and loved her.

Another adjustment period followed, with explanations to others about my

disability, and new kids to tease and make fun of me. I seemed to be more accepted, as

others in the class also had different disabilities and problems to deal with. Yet, the

teachers in my class seemed to be more willing and able to deal with the problems which

the students in the class dealt with and they weren’t judgmental about the students’

disabilities. I made some new friends, one of whom is still my best friend today.

After my diagnosis, because the school district was not equipped to handle a child

with special needs, I was sent to a school for children with special needs for 2 years,

where once again an adaption to my environment took place, along with gaining

acceptance among the students and teachers. Because there were many children there

with special needs, I did not face the teasing and ridicule of the other students.

After those years, I attended the local girls’ Parochial school for two years. More

understanding than the other schools, I quickly made new friends and adjustments. The

Sisters were understanding and very caring. Making me feel more at ease and at home.

When I was to start high school, another change was ahead. I would go to a

Catholic, all-girls boarding school in another county for my freshman and sophomore

years. This decision was made because I needed a more structured classroom setting than


the public schools were offering at that time. A small school, where I quickly adjusted to

once again being away from home. Explaining my seizures to others was becoming

another part of my daily life, along with chores, class and daily activities. As I had to

answer new questions about my seizures, I soon learned where to find the answers to

what I didn’t know. I welcomed the opportunity to share my knowledge about Epilepsy

with others. For the first time, I can remember, not being taunted or teased because I was

different from the others. I had learned already that in order to be accepted by others, I

had to accept them as well.

At the end of my sophomore year, it was rumored that the school would be

closing. My parents enrolled me in yet another boarding school in New Jersey. This time

I was only there for 4 months, when due to an increase in seizures, the sisters thought it

best if I returned home to go to school. For they thought the seizures were caused by the

stress of being away from home.

As it turned out, it was an onset of appendicitis, which had caused the excess

seizures. No sooner did I get home, than it had to come out. You see, one of the causes

of my seizures was changes in body chemistry. Right before I would get sick or before

my monthly, I had an increase in seizures, as many as 4 – 5 in a span of 2 – 3 days.

Being in a new school in the middle of high school was another adjustment for me

to make. I did not know many of the students, except a few from my neighborhood, Girl

Scouts and those who were friends of my brothers. I underwent a certain amount of

scrutiny because of my seizures. Being open about my epilepsy soon relaxed those

around me. I was approached by my Speech Communications Instructor, who asked me

to do a paper for extra credit for class, so that the students would have a better

understanding of what epilepsy was and have their questions answered at the same time.

This was a paper I would use many times over the next 5 – 7 years, to explain to others

what epilepsy was and how to deal with it. My problem was one I discussed with my

teachers on the first day of a new class, so that they would know what to expect should I

have a seizure.

I went on to Concordia College in Bronxville, NY, from high school,

getting an AA in Liberal Arts and an AAS in Human Services from Westchester

Community College. Nothing would stand in my way, I wouldn’t let it. My family was

also very supportive of everything that I did, though they were surprised that I wanted to

attend college.


THE SURGERY

In 1986, we learned that surgery was being done to remove the scar tissue which

was the focal point for the seizures. My parents were set to take me to The Mayo Clinic

in Minnesota when my doctor at NYH mentioned that it was also being done at Yale New

Haven Hospital in New Haven, CT, so we were referred there for further evaluation.

My first appointment was a general intake of my medical history. After that, the

first series of tests to done were started.

It was Holy Week and I had been admitted to The West Haven VA for my first

test. I was hooked up to an EEG and monitored by a video camera. I was slowly weaned

from my medication in an attempt to try and induce seizures they needed for my study.

I was given several neuro-psychological tests over the course of the week as well. Once

they began to wean me from the medication, I thought I was having seizures, but they

turned out to be withdrawal symptoms. I was given several EEG’s during the course of

that week. During that time, the side rails on my bed were raised so that if I did have a

seizure, I wouldn’t fall out of bed. After they recorded the number of seizures they

needed for the study, I was put back on my medication and released a week later.

The recorded seizures were then studied further to determine candidacy for

surgery. Once it was determined that I was a good candidate, which not everyone is,

further testing was necessary and we went on.

Next, Dr. Susan Spencer attempted to work with my medication. For a while, my

seizures were somewhat controlled, but soon reverted to the old pattern after my body got

used to the medication.

The next in the series of tests to be conducted was again done at West Haven, VA.

A WADA test, to determine which side of the brain my speech and memory was on, as

opposed to where the lesion was located was done. In this test, using a catheter at the

groin, they put Intracartid Sodium Amobarbitol in each half of the brain, once side at a

time, to put the brain to sleep and then tested my memory with words and pictures. I can

still remember when the right half of the brain was put to sleep, I remembered


everything, but when the left hemisphere was put to sleep, I was very unorganized and

discombobulated. It seemed that the lesion they were going after was located behind the

right temporal lobe. Thereby, reducing the risk of damage to the speech and memory

when they would ultimately do the surgery. EEG’s and neuro-psychological testing was

again conducted. One more positive test on the way to surgery.

The last test was scheduled for Halloween. This time, probes had been implanted

into each hemisphere of my brain, to pinpoint where exactly the lesion was located and

how much of a lesion was there that Dr. Dennis Spencer had to remove. When I woke

from the procedure, in the ICU of Yale-New Haven Hospital, I must’ve really looked

dressed for Halloween. I was wearing a skull cap and the EEG wires were protruding

from the cap. Seizures were once again induced by the reduction of my medication.

Once this test was complete and the area where the lesion was located was identified, the

actually surgery would be scheduled. It was scheduled for mid January, 1991. I was now

preparing for a life of no seizures, once the surgery was completed.

The morning of the surgery, I was wheeled to the operating room. Only after the

surgery was completed, 8 hours later, would I recall a subconscious repeating of The 23rd

Psalm and The Lord’s Prayer. My faith in God had once again pulled me thru this time in

my life. I knew I had a long road ahead of me and He would be with me all the way, as

well as my family and my friends. My faith has always been strong, and this success

against any more seizures only strengthened it even more. My family and friends, along

with my Church, stood beside me all the way.

I was in ICU for 2 – 3 days, and was then moved to a regular floor. I received

many phone calls, and support from everyone I knew. My only visitors were my parents,

as the hospital was not near any of my other family and friends. I was released 10 days

later. My parents had rented a first floor house in nearby Stratford, where I went for

recovery. Several visits to Yale followed. My vision had to readjust, having been

affected by the surgery. I was told prior to the surgery that a miniscule portion of my

peripheral vision would be affected. I saw double during the adjustment period when I

looked out my peripheral vision.

I returned to my apartment almost 2 months after the surgery. I was on my own

once again, recovering from the surgery, but now I was seizure free. What an adjustment

to be made, a life now seizure free with no more worries about where I was going to be or

what I was going to be doing, should I have a seizure. Over the next two years I would

be weaned from my medication and ultimately I would earn my drivers’ license. I dream,

which at the age of 16, was the furthest thing from my mind.

Follow-ups would continue for about 3 – 4 years after the surgery.


Alison Williams Pinsley

FURTHER EDUCATION

In 1996, I returned to Concordia, as an adult student in their ADP (Accelerated

Degree Program) to complete my BA degree in Behavioral Studies. When I first learned

about the program, I knew that if I didn’t enroll in the program at that time, I wouldn’t do

it. This was a real challenge, working full-time and going to school. Classes were held

one night a week and 10 Saturdays throughout the year. I learned quickly that my

schoolwork was priority and that if I didn’t start my assignments when I got them, I

wouldn’t complete them on time. I had a different outlook on going to college as an adult

than I did just out of high school. In one years’ time, I completed 54 credits and earned

my BA in Behavioral Studies.

In September 2003, I enrolled in an on-line MS program, offered by Buffalo State

College in Adult Education. This was another challenge I set for myself, working full

time and going to school as well, to complete yet another phase of my education. It was

interesting to complete my education on-line, and I had wonderful on-line teachers and

classmates, who were very supportive and helpful. This was a new field for me, different

than what I did every day at my job. I completed the degree in May 2005 and attended

the graduation ceremonies, where I finally met those I had been communicating on-line

with for 18 months.


EPILOGUE

When I had first been diagnosed with epilepsy, there wasn’t a lot known about

how to control it. Advancement thru the decades now tells us otherwise. New

medications are always being developed as are new techniques. Beside the surgical

approach, which not everyone qualifies for, there is an implant called “Vargas Nerve

Stimulator” or “VNS”. It works much the same was a pacemaker does, using electrical

impulses to prevent a seizure. Dogs are known being trained as “seizure alert” dogs.

They are trained to warn the individual of an oncoming seizure and protect the individual

from harming themselves.

Growing up with seizures, could be scary at times. Not knowing where you were

going to be, whom you were going to be with, or what you were going to be doing are

only some of the questions that an individual with seizures thinks about. Also, would the

person you were with understand that you would be okay? If you were with somebody

who didn’t understand, or in a public area with nobody around that knew about your

seizures, you might find yourself in a different situation. You may wake to find yourself

in the back of an ambulance, on the way to the hospital. Not all seizures are that serious

that one needs to go the hospital every time.

I have been employed by The Westchester County Department of Health since

January, 1993, as an Office Assistant (typist) in the Bureau of Disease Control, with

STD’s. My job is mainly secretarial in nature. I enjoy my work and have learned many

thing about health related issues from my co-workers.

I have been married since 1997 and enjoy the time spent with my family and my

friends.

Health & Medicine

The alison william pinsley story