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LIFE in the ELECTRIC CHAIRA Man And His Wife explore A life On Wheels
By DAN WEST
AuthorHouseCopyright © 2012 Dan West
All right reserved.
Chapter OneSo, What Happened?
First, some background/history. I was born in Oakland, California, but lived in San Lorenzo, a few miles away, in August of 1951. We moved to another house in January 1955, in Centerville (later Fremont, California). TVs were now available, and we actually got one. They were only available in black and white, and had no remote control—imagine that. My dad got to know a minister and soon we were going to church. Many years later, I was moderator of the senior high youth group. My parents were strict, but I was rather mischievous. I started kindergarten in September of that year and was continually hassled by a first grade girl. One day, I dragged the girl into the empty boy's bathroom. I was about to run out, but I saw her lying there face down, and I pulled down her underpants, then ran back to my class. She must have been too embarrassed to tell anyone, and I never got hassled again. Today, if she told, I would probably have been sent to juvenile hall as a sexual deviant.
Unfortunately, being mischievous also had its downside. In first grade, it was raining and the teacher said to stay out of it. Of course, I went out in it and then noticed her looking at me. I started running to where it was dry, but ran into a big steel girder. I had a big goose bump on my head. I got sick. My head has taken a beating over the years. In second grade, I fell off some playground equipment onto my head. I felt sick. In fifth grade, I slipped and hit my head in some sprinkler water that we were not supposed to play in. I felt sick. I also got in a fight in the fifth grade.
A six grade boy thought he was cool and said something to me that I did not like. We got into a fight and he was cleaning my clock when the principal arrived. The bell rang and kids went to their classes, but the principal allowed us to fight for a little longer. I think the principal liked the fact that I was getting beaten soundly. I ended up with two black eyes and an upper lip that looked like raw hamburger. My parents talked to the principal, but I still had to go to school the next day. All the kids stared and stared. I felt foolish, but I had no choice, I had to go. There would be no more fights until the 11th grade. I had learned a valuable lesson. Today, the principal would probably be fired and the school district would get sued.
In seventh grade I agreed to mow the lawn of my parents' friends' neighbor. I agreed with the husband to mow the front lawn for a month at a certain price. When I went to collect after a month, the wife answered the door and offered me a lower price. I explained that the husband and I had already agreed on a price. She said that he was not available and that she was in charge. My dad was waiting in the car, but I got angry and used the B word. My dad sensed something was wrong and got out of the car. The lady told him to get back in the car, take me and leave. So we did. The friends of my parents were able to make things right. I returned, apologized, and took the lower price. However, I went back for the next few years on Halloween and threw eggs at the house. I knew it was wrong, but it felt good. Feelings may tell you to do something, but it is not always right.
Speaking of Halloween, one year, when I was in junior high, I was walking a half mile to church when I decided to detour and go to the nearby shopping center, where a bunch of kids were celebrating Halloween. There were about 200 kids there, throwing water balloons, eggs, and pumpkins. The police cruised by, but the kids were good when they saw them. I found myself being chased by kids in a car with water balloons. I had an egg in each hand as I ran to get a way. I was running hard and did not see some ground cover. I tripped and went flying, and landed on grass. The eggs were still whole, so I got up and hid so they could not find me. I was lucky.
In eighth and 11th grade, I also played tackle football. I wrestled and played basketball in high school. On the last day of high school, when I was a senior, I was riding in the backseat of a VW with some friends, without wearing seatbelts. Suddenly, we were chased by a truck with a fire extinguisher, and guys were trying to spray us with water. We tried to get a way, but we had a slow car. We turned a corner to sharp and rolled the car over one time, landing upright. The window next to me had been knocked out and I had glass in my belly button. The driver was okay, but his elbow had broken the nose of the passenger in the front seat. The problem was that the car belonged to the passenger. So, the driver felt really bad. When the police showed up, we did not say that we were being chased, but I think the officer knew. We laughed afterwards, but we were really lucky. My head had been rattled around, but I felt fine.
I played basketball in Junior college, and dove for the ball a lot. I was also in a motorcycle accident in 1988 and bumped my head. I was going slowly in between lanes during commute hour when a truck pulled out in front of me. His bumper caught my engine guard and I went flying through the windshield of the motorcycle. We were not going very fast, but I did land on the pavement surrounded by cars. I was able to go to work, but by noon my whole body was sore. Fortunately, I was wearing a helmet.
I also played basketball with some friends at work. One day we were playing another team and I backed up and fell, and cracked my head on the cement. I stayed out for a while, but went back in and played very well. I had a friend follow me home, as I was not feeling 100%. Later that night I threw up and went to the doctor. He said I had a mild concussion and that I would be okay in a few days. I was snow skiing and water skiing, too, and had some great falls. Maybe all this hitting my head had its consequences, many years later. Only God knows.
During Spring break (April) 2001, a group of high-school kids decided cold weather beach camping in Half Moon Bay, California, would be a blast. I traveled as the senior leader with one of the area directors of our local Young Life group. Young Life is a Christian ministry to high school kids started by Jim Rayburn back in the early 1940s. He was a minister in Texas who wanted unchurched kids to enjoy spiritual things, and have fun doing them. It is now an international organization, with clubs all over the world. At the campground, it was rainy and I laid in some weeds during a game, plus, a bout of "whip-lash" hit my neck while we were playing soft-ball in the sand later the next day. This left me a bit out of sorts in the days that followed. I felt tired and had a cold when I got home.
I was also playing right field on a city recreation softball team. The game had started at 9 o'clock at night and for an April day the weather was pretty nice. The batter hit a low line drive to right field. The ball bounced and I dove for it, as it was way to my left. I was able to stop the ball and throw it in, but hit the left side of my head and chipped my tooth. I felt fine. Finally, the opposing team had three outs and we were up. I was second at bat this particular inning. Since I was an older player, 49, I usually was 9th out of 10 in the batting order. My ups came and I actually got a hit and landed on first base. The leadoff hitter came up with two outs and hit the ball sharply up the middle and I took off. As I rounded second heading for third, I felt a little strange, but was safe sliding into third. The next guy hit a single up the middle and I scored easily. As I went back to the bench, the coach said I looked a little strange when I rounded second going to third, kind of like I was running at a 45 degree angle. The other players thought I had too much to drink and just laughed. I agreed with the coach, but told him I was fine. I finished the game and drove home (unfortunately, that was my last game, I just did not know it yet.)
The next day at work I noticed my writing was a little different. I felt okay, but my fine motor skills were not so fine. I remember thinking I could get a few days off because of this "weirdness." Little did I know this was the beginning of the end of my working days. I kept on at work for the next few weeks as things became progressively worse. We checked in with the doctor, hoping for an easy answer. She said it was probably Labrynthitis, (an inner ear infection) and would go away in a few days. I was slowly getting worse after a week, and went back to the hospital, with a different doctor. He finally asked if I was spinning in my head, then said, "No spinning, no Labrynthitis," and scheduled an MRI May 31st, to see if we could visualize a problem.
In the meantime, on Memorial Day weekend we went camping at Lake Shasta, in northern California, and I struggled to get pulled out of the water behind our boat on one ski. I had been skiing since the early 60s so I did not anticipate a problem. When I was much younger, my dad had been given a small ski-boat hull, and he and a neighbor built the insides and also built a trailer to pull it. I learned to double ski and single ski, and we went about once a month during the summer for a number of years. In my college years, I went camping with a friend and his family, and their ski boat. I only was able to ski a few times a year. After I was married, and had a couple of kids, we bought a used ski boat. We then started camping at a lake and also house boating for a week at Lake Shasta with friends. I was getting good and I could make it through the water ski course.
Now, I tried to get up several times and I usually got up on the first or second try. I could not get up. In my 30+ years of water skiing, I could not maintain my balance. My brother and oldest son had accompanied me, and were shocked. They knew I was not quite 100%, and I thought I saw some watery eyes. I could walk around, but did not have the coordination to ski. I was at a loss. My wife drove most of the way home, much to her dismay, as she never offered to drive the truck with a trailer in tow. I slept in the back of the covered truck, my wife and I preoccupied with the thought something had gone terribly wrong.
Chapter TwoI Am Tired
The information in this chapter is good, but I find it too medical for me. We got back home from Lake Shasta, and got the MRI. It showed there was inflammation in the brain noted by white markings on the film. They ran a few blood tests and attempted to get the inflammation under control. When they did a blood draw, I actually had veins. They would later vanish, since I had so many blood draws.
Doctor R, a neurologist, did blood tests and head-skull x-rays. Nystagmus, a loss of muscle control in the eyes, causing them to move involuntarily back and forth and Ataxia, a jerky gross motor movement, were prominent along with tingling in both of my hands. The MRI was a positive read, meaning something was amiss. In my particular case, the cerebella and pons region had white dots in random areas indicating inflammation. Doctor S, another neurologist, did a chest x-ray and ordered a Lumbar Puncture (L.P.) study. She also decided a chest x-ray was in order to see if inflammation was also in the lungs. She did the L.P. and found the results to be negative, meaning no disease in the spinal fluid. There was an increase in finger tingling and noticeable bilaterally. Marcia, my wife who is an R.N., notified Doctor K, a neurologist at the hospital where she works, as a "second opinion." He had never seen the likes of such markings on an MRI and decided immediate intervention was necessary. He notified the doctor by phone and recommended high doses of steroids to be given at once. The doctor, at a loss for a better solution, infused 1 Gram (1 quart for you non-medical types) of steroids intravenously in two hour infusions, guessing the diagnosis was: ADEM (acute disseminated encephalomyelitis).
On June 12th, the headache on both sides of the temporal areas stopped after steroid infusion. The blood pressure taken was normal at: 133/81. Headaches were reported prior to treatments and Doctor N, our number one neurologist, was notified. I was feeling 20% better. I was still tired.
June 15th Doctor N recommended us to see Doctor G at a nearby hospital. He is a renowned neurologist in Multiple Sclerosis and we wanted to rule this condition out, or we just wanted the truth and to be set free by knowing what we were up against.
We called a dear nursing friend, who gave a massage to my sore back. Surges, I like to call them, started, meaning episodes where I stuttered or had a seizure like spasm, yet not a seizure. I was still able to walk 1-1/4 mile around our local Newark Lake, but needed hand holding due to my shaky gait.
Physical Therapist, Sue V, evaluated my movements on June 21st. She noted my left side was stronger than my right. She thought spinal compressions could be the culprit. We made an E.R. visit and saw Doctor M to consult him on the surges but he was afraid to recommend anything without us consulting a neurologist. Doctor R recommended increasing Prednisone to 70 mg/day. Doctor K was notified of my surges of slurred speech and recommended an EEG, which was never ordered. I continued "surges" 10-20 times an hour but saw improvement with my gait and my strabismus. We attributed this to the anti-inflammatory properties of the steroids.
Doctor N was notified about surges and a CAT scan was ordered. We met Doctor A, yet another neurologist, who recommended trying Tegretol. Knowing Tegretol was used for seizures, it frightened us in the prospect of this being what was going on neurologically. He assured us that sometimes the slurred speech is improved with this medication in patients that have Multiple Sclerosis or speech issues.
In fear of the unknown, we once again consulted with Doctor K, who agreed with the Tegretol. The June 28th MRI #2 showed a marked improvement. The surges and slurred speech decreased with Tegretol.
Doctor G did a physical exam and recommended weaning off Prednisone, but to continue with the Tegretol. ANA (anti-nuclear-antibodies) were drawn to check for Lupus, which thankfully was negative, or ruled out. On the last day of Prednisone and Tegretol, we attended a wedding. My face was puffy from the steroids but since I had been using the weaning process of getting off of the steroids I found myself to be rather comfortable and even able to ambulate slowly but more sure footed. I was still tired.
From July 24th to Aug. 4th, we had planned a Hawaii vacation. Never in our wildest dreams did we think this inflammatory issue was going to take this long to resolve. We thought this to be a virus, or a onetime acute attack of the brain. We confirmed improvement by Doctor N prior to going and happily gathered up our boys to spend my Hawaii 5-0 in Maui. I was to turn 50 on August 1. We returned from Hawaii with concerns. Near the end of our 10 day stay I was unable to drive, not trusting my muscle abilities, and I also noted an increase in "wobbliness." Doctor R was given the message about wobbliness.
On Aug. 20th, we were scheduled for MRI #3, which, much to our dismay, was worse than the first time!! The same cerebella site had white areas all around with some in the pons and medulla. Since steroids had helped before, we had to start 1 gram of steroid infusions for 5 days. Another L.P. by Doctor N was ordered to look for bands cells that come from our white blood cells. No cells in the L.P. were found, a good sign, and Prednisone was started orally at 60mg a day.
I started feeling surges again, but this time not with the speech. There was no recommendation for Tegretol. My right arm was numb in the morning. The tips of my fingers were a tiny bit numb. The frequency of surges was irregular and I'm a regular guy, trying to make sense out of my irregular patterns. I had a light headed rush and urgency to pee. Doctor N recommended Tegretol again. Prednisone is the only anti-inflammatory drug that goes to work in a crisis. Prilosec was given to me to relieve my stomach from any issues with ulcers, a side effect of steroids, or Prednisone. Tegretol worked as an "anti-surg" med for me. September 20th, four days after my wife's birthday, was celebrated quietly. We had a visit with Doctor G at a major university, who decided we did not have Multiple Sclerosis, but perhaps a Rheumatology issue like Neurosarcodosis. Doctor S, a renowned Rheumatologist, decided we needed to see him in October. I was still tired.
Ah yes, the infamous L.P. was recommended again to make sure I did not inherit yet another problem. Doctor N found the cerebral fluid to be within normal limits. Doctor S and Doctor R evaluated me and recommended a Cerebral Angiogram to rule out Neurosarcodosis. Blood was drawn once again. A complete blood count, a clotting time, and my electrolytes and all were in normal limits. On Halloween, I was on my last dose of oral Prednisone, thankfully. Due to the buzz and euphoria, I was feeling out of it most of the time. November was upon us and Doctor H gave us a report
Excerpted from LIFE in the ELECTRIC CHAIR by DAN WEST Copyright © 2012 by Dan West. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Chapter 1 So, What Happened?....................1
Chapter 2 I Am Tired....................9
Chapter 3 More Than A Caregiver....................31
Chapter 4 Please Listen To Me Like You Care....................41
Chapter 5 Always There to Help....................49
Chapter 6 You Mean I Have to Budget?....................57
Chapter 7 Will They Be Around, Plus....................65
Chapter 8 I Do Not Want To Go....................73
Chapter 9 There Used to be Muscle There....................85
Chapter 10 I Used To Just Do It Myself....................91
Chapter 11 Hope....................99
Most Helpful Customer Reviews
I first met Marcia and Nate (the Author's wife and oldest son) doing a television commercial and we developed a lasting friendship. Later, I met Dan: a strong, dynamic man who shared not only living in the small town my own children grew up in but a love for waterskiing and a common love of God. Then Dan got sick. Medical science had no answers, as he struggled. While growing weak phyically, his inner strength and inspiration never waiverd. While home alone, while Marcia was working and his two sons were at school, Dan started using Dragon Voice Acitivated Software to tell his story. He then asked Marcia, for help with his book. "What book?' The book is now available. When I heard that, I rushed over to their house to get a copy. I read it on a plane flying to Dallas to visit my daughter. I was.... I AM.... inspired, moved and touched by it. I know you will be too.