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The alison william pinsley story


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The alison william pinsley story

  1. 1. National Seizure Disorders Foundation 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
  2. 2. National Seizure Disorders Foundation 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
  3. 3. National Seizure Disorders Foundation 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.
  4. 4. National Seizure Disorders Foundation 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
  5. 5. National Seizure Disorders Foundation 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.
  6. 6. National Seizure Disorders Foundation 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.
  7. 7. National Seizure Disorders Foundation 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.