Intractable

By Arlee Riel

At the age of 40, Peter made a mid-life career change to law enforcement. Within three years, he was a sergeant in the Marine Patrol division of a New England state on a path to a successful career. Soon after, Peter began to experience weird dj vu sensations and a burning tingling feeling that began in his stomach and would rise to his chest. Over time, the feelings worsened and led to episodes of partial consciousness, most often while eating and occasionally when driving. It was determined Peter was experiencing seizures and his condition was deemed intractable. This is Peters story of his near career ending illness, his treatment, persistence, determination, and the incredible events that led to an eventual cure.

• Language: English
• Publisher: Xlibris US
• Release date: Jan 31, 2009
• ISBN: 9781469111780

Arlee Riel

Author Arlee Riel is a software engineer and former New England resident living in Southwest Florida. She is Peter’s wife and with his help and the help of her two children, she has written this book to detail Peter’s amazing story of his battle with intractable epilepsy.

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Copyright © 2009 by Arlee Riel.

ISBN:      Softcover      978-1-4363-9777-3

                eBook          978-1-4691-1178-0

All rights reserved. No part of this book may be reproduced or transmitted in any

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This book was printed in the United States of America.

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Contents

PREFACE

CHAPTER 1

CHAPTER 2

CHAPTER 3

CHAPTER 4

CHAPTER 5

CHAPTER 6

CHAPTER 7

CHAPTER 8

CHAPTER 9

CHAPTER 10

CHAPTER 11

CHAPTER 12

CHAPTER 13

CHAPTER 14

CHAPTER 15

CHAPTER 16

CHAPTER 17

CHAPTER 18

CHAPTER 19

EPILOGUE

PREFACE

This is a true story that has evolved over the past six years. The names of everyone in this story have been changed, or are referred to only with initials.

Peter, in this story, is my husband. When choosing names for the people mentioned in this book, I specifically selected the name Peter for him because it means Rock. Once you have read this story, you will know why I made that selection.

To all friends and family who contributed to this book, thanks from the bottom of our hearts. Special thanks to JK for her editing insight.

This story is dedicated to my husband and to our sons. It never would have been written without their contributions, especially Peter’s.

CHAPTER 1

Remember the block. Remember the block, the neurologist said in a monotone voice, as she showed Peter the building block and then placed it in the cardboard box. Remember the baby. Remember the baby, she instructed as she held up a child’s small doll and then returned it to the cardboard box, together with a dozen other well known every day items. She displayed each item in the box in a similar manner, as she prepared Peter for the Wada (WAH-dah) test she would administer. This test is given to epileptics to determine where speech and memory are stored on each side of the brain, usually in preparation for surgery. Peter concentrated on each item as it was shown to him, and he filed its identity away in his memory. He thought, This isn’t so hard. I know what these objects are.

An hour later Peter was wheeled to the test center, and he was prepped for the procedure. His head was placed into a vice to prevent movement. A catheter was inserted into his femoral artery in his groin and snaked through his body to the internal carotid artery in his neck. At the start of the test, the catheter would be moved into the right hemisphere of Peter’s brain where sodium amytal would be injected to put that side of his brain to sleep. Once asleep, that hemisphere would not be able to communicate with the left hemisphere of his brain, and the common every day objects would be shown to Peter for identification. The effects of the sodium amytal would wear off quickly and the catheter would be lowered slowly from the right hemisphere down to his neck where it would then be passed up and into Peter’s left hemisphere through the carotid artery. Sodium amytal would again be injected and the steps repeated.

When the test was begun, and Peter’s right hemisphere was injected, the left hemisphere was able to process the information. Peter identified the items that were shown to him. When his left hemisphere was injected and his right hemisphere processed the information, the items from the box, once again, were removed one at a time, and Peter was asked to identify each item. He struggled to remember whether or not he had seen the items before, and if he could remember the name of the items. Quite often, he felt as though he knew what the objects were, but he couldn’t remember the words for them. At times, when he did remember the words, he wasn’t able to say them. Once the effects of the sodium amytal wore off, Peter’s memory returned.

The Wada test was one of the final tests given to Peter in his long road to treatment for intractable epilepsy. When I first heard the word intractable used, I had no idea what it meant. It sounded like a powerful word, I thought similar to other in-able words I knew, such as: insatiable, inimitable or invaluable.

I removed Big Red from the shelf and thumbed through it. This is my children’s nickname for our three inch thick American Heritage Dictionary that I keep in my office. I searched for the definition of the word, and found it to mean difficult to manage, difficult to cure—which made perfect sense in the context it was used. Our neurologist might as well have said insolvable or inexplicable. All these words describe my husband’s medical condition.

Peter has right temporal lobe epilepsy and it was classified as intractable—unmanageable and not controlled by medication. According to the Epilepsy Foundation, three million people in the United States have epilepsy and seizures; there are 200,000 new epilepsy cases per year; and ten percent of new epilepsy patients fail to gain control of their seizures. Peter fell into that ten percent category.

We didn’t know how he got it or what caused it. We were told by his doctor to stop looking for a cause or trigger because we would never find one, as is typically the case when adults begin to have seizures.

When I decided to write this book, I couldn’t remember when the seizures began. It seemed like decades had passed, because it disrupted our lives so much. I created a timeline to put everything into perspective. My best guess is that Peter’s health issues began around 2002, when he started to complain of strange feelings in the pit of his stomach. They came over him in waves and then went away after several seconds. Most of the time, these feelings occurred when he was eating.

Initially, we took a wait and see approach. After the feelings continued for months and progressed to what we later learned were simple partial and eventual complex partial seizures, I made an appointment for him to see his physician. The appointment was the first of many, and the beginning of several years of medication trials and medical procedures. His treatment spanned two states, included primary care doctors, neurologists, neurosurgeons and specialists. Finally, in 2007 we were able to get answers to our questions. This is our story.

CHAPTER 2

Peter and I met in 1982. I know now it wasn’t a chance meeting. I was working as a receptionist for a local real estate agency. A real estate investor purchased properties through our agency, and hired his wife’s cousin (who happened to be Peter) to renovate the properties. He then flipped the properties for profit, before flipping was a household word. The investor and my long-time friend and co-worker, thought they would be matchmakers.

I remember my friend Marlo asked me Did you see what nice blue eyes Peter has? My response was, I really hadn’t noticed, because he is always wearing that goofy hat. Finally, I noticed. He did have beautiful blue eyes. His hair was dark and curly, and he had an infectious smile and a boyish charm. He was self-assured, and maybe a bit cocky, but that made him more attractive. At the age of 22, he owned his own business, and I thought maybe I should get to know him better.

One day, in conversation, I hinted to him that my old dilapidated doghouse was leaking, and I thought it needed a new roof. Early that Saturday morning, quite unexpectedly, Peter knocked on my door and woke me up. I was sleeping in after a late night of having a little too much fun. After all, I was 22, living on my own, and renting a house with one of my friends from high school. We were doing all those things we probably would have done if we had gone away to college and lived in a dorm on campus.

He had his hammer and shingles in hand and put a new roof on my dog’s house. We spent the day together, and I convinced him to attend a local charity dance with me that night. He walked into the school gymnasium like he always belonged there not realizing my friends were checking him out with eagle eyes. One thing about small communities is that the locals can be very cliquey and cruel to outsiders. He seemed to fit right in with everyone. I guess you can say I was intrigued by him. He was different from the guys with whom I had grown up and tended to date.

I grew up in a small bedroom community in New Hampshire. The population now is nearly 4,000, but when I was growing up it was closer to 1,500 or 2,000—there was an elementary school, a couple of real estate agencies, two or three general stores and several other small businesses: mechanics, electricians, plumbers, and contractors, all of those professions a small town needs to survive. There was a saw mill in town that employed several dozen people, but for the most part there was no industry to maintain the real estate tax base and nearly all residents had to commute to their jobs 30 to 60 minutes away each day.

My home was a turn of the century New Englander farmhouse situated on two acres along a river, and I lived there with my two younger brothers and my parents. Our house was in the center of town and was within walking distance of the school, library, church and general stores, and we had many friends who lived nearby.

My dad was an insurance adjuster and my mom was a housewife. We were expected to do well in school and were expected to make them proud. We were brought up thinking our family was perfect, and we weren’t to do anything to make anyone think otherwise.

I was the oldest child in my family, and I don’t remember a lot of things from my childhood. One of my brothers remembers everything, so it is fun when we get together and talk about growing up. He surprises me sometimes with the things he remembers, and that I have forgotten. We all attended the local elementary school and traveled to a neighboring town for high school.

Even then, with a Type A personality, I was very studious and conscientious. I graduated in 1978 valedictorian of my high school class. Having had an inadequate guidance department in high school, and not having any dreams or direction, I opted to attend the state community college as a commuting student. I graduated in 1980 with honors with an AS degree in business administration majoring in accounting.

I do remember we were brought up in a very strict Catholic household. I remember going to church every Sunday and sitting in what I thought was our reserved pew in the back of the church. We arrived at church half an hour before mass began every Sunday so we could sit in that last pew in the back. We also went to Catechism once a week even during the summer months when we were supposed to be on summer vacation.

My brothers were altar boys, and although I don’t have a lot of childhood memories, I remember the Sunday they served on the altar together and giggled throughout mass. My brother claims it was because my younger brother kept making funny noises. When they returned home, my mother was furious. As punishment, both boys had to sit at the kitchen table staring at each other without talking or laughing. Like that was even possible. Thinking about it to this day makes me laugh out loud, though I know laughter then would have meant a serious grounding.

We never traveled very far from our home. Our family vacations consisted of a week spent at our rustic camp in northern New Hampshire not far from the Canadian border. We traveled to Massachusetts only for class trips to the Aquarium or Museum of Science or to a Red Sox game. Massachusetts could just as well have been a foreign country to me, as were most of the other New England states. Forget about the continental United States, or the world, for that matter.

Our lives changed when my father got sick. He was diagnosed with non-Hodgkins lymphoma when I was about 15. After many hospitalizations and years of treatments, he passed away in our home on a Saturday morning ten days after my 18th birthday. My brothers were 16 and 14. Looking back, we were all very young and didn’t understand fully what was happening to our family. We never discussed his illness. It was something that happened and we went about our daily lives as if nothing was out of the ordinary.

To this day, I don’t know if we have grieved over his death. I remember, as the three of us were sitting in the limousine waiting to go to the funeral, we were told by a family member we were to make our father proud. To me, that meant, hold your head high and don’t cry. I didn’t, and