Читать книгу A Thorn in My Rose Garden - C. Claire Claire Lucka - Страница 3

My husband and I were in our mid forties and were beginning to dream about retirement and slowing down. We were looking forward to that life together just the two of us. He was working for a rather large company as a field service person and I was a Corporate Paralegal.

My job at that time was constant stress and anxiety. I was in the center of a corporate office nightmare with SEC investigations, power plays and takeover attempts between officers and directors. I would walk down the hallway at work bumping into the walls as if I was intoxicated and trip every time I walked into my boss’s office. He could not figure out what was up with me and questioned me about it a couple of times.

The year was 2002. I was working for a rather fast-paced public company during the time of corporate takeovers, inappropriate stock trading, misappropriation of funds, creative financial reporting and other SEC reporting issues. My work became very intense, stressful and extremely demanding. I would describe my working conditions at times to be a “hostile working environment”.

It was during this period of time that I began to notice a general feeling of malaise. I frequently felt fatigued and a slowing down of both my energy and concentration levels at home and at work. I also developed allergy symptoms that I had not had before. All these symptoms noticeably increased in the number of times and length. I felt that something was not quite right, as if my immune system and general stamina had weakened. Commuting and working full-time became too much. There seemed to be never enough time or energy left at the end of the week to get housework and laundry done before it was time to go back to work again. I could not catch up. I became less able to manage my days and complete the tasks I had been able to do before. Because of my age then, we attributed this to getting older and menopause. It appeared that I needed to make some life changes. We still had both children living at home, the youngest in college; I was working full-time plus some overtime and commuting three hours a day, keeping house, etc.

It had been a nice relaxing July 4th weekend just Tom and I. We were sitting outside on the deck with the newspaper and a couple of drinks. I had been down in the yard trimming the rose bushes for about a half hour. Tom had said years before that he never promised me a rose garden but I got one. Thirteen beautiful rose bushes, a baker’s dozen. I could see them from the family room and the bay window in the master bedroom. The colors were gorgeous when they were in bloom. Anyway, Tom had shown me how to cut them so that they would grow long strong stalks for cuttings and keep them nice and showy. I sat down took my garden gloves off when at the same time we both noticed that my right index finger was “pill rolling” (what we learned later was the term they used to describe it) and I could not stop it from doing it. That is when my husband insisted that I see a doctor and find out what was going on with me.

I made an appointment with my doctor the following week. He checked me out, did a couple of what I know now to be Parkinson’s (“PD”) tests and scheduled me as soon as possible for a brain scan. Immediately thereafter, I was to take the results to a neurologist in the area he recommended.

I spent the entire week before this appointment trying to diagnosis my symptoms. My doctor had not said a word about what he thought my problem might be. It drove me crazy. Although I feared finding out, I knew I needed to know. I had come to the realization that there was something serious going on and I was scared.

My MRI took two hours. A long time when your head is in a lock down and you are not able to move. All while the sound of the tick, tick, tick, ticks of the machine continued. The technician apologized several times for having me so long, which he indicated was a bit unusual but that the doctor wanted several tests performed.

This just made me more nervous I thought to myself. ”What was happening to me?”

I finished the tests with no side effects and instructed the receptionist to make certain that the neurologist received the results before my appointment that afternoon. I had taken the day off for these tests. Now I had a few hours to think and wonder until I met with Dr. Williams.

Dr. Williams’ had a small office on the second floor of a medical building near where we lived. I walked in, filled the customary new patient forms, and sat. I was alone. Tom was out of town on business and would not be home until Friday. Dr. Williams made me feel very comfortable and proceeded to perform some of the same tests Dr. Jacobs had done plus a few more. Then he told me that he thought I had Parkinson’s. He explained that the brain scan did not indicate MS and that was a good thing. A million things ran through my head and I began to panic. All I knew about Parkinson’s was that old people had it and I did not think it was good.

Dr. Williams tried to calm me and said. “We don’t know for sure yet. Wait until we are certain. The only way to know for sure is for you to start taking a drug called Sinemet. If you notice a difference, that means it is working and you have Parkinson’s. If it does not work, well….”

He was sure that is what I had. … “And anyway Parkinson’s was better than having MS”, he offered, “because Michael J. Fox had Parkinson’s and that meant that he would be spending money towards finding a cure.”

I left his office in complete shock. When I got downstairs to my car, I started crying uncontrollably. I wanted to call Tom but he was working and I did not want to tell him until he got home face-to-face. I called Cathy, a good friend from work. She could barely understand what I was saying when I called. I was so upset. She managed to calm me down a little and I told her what the doctor had said. Then I drove home. I knew I could not share the news with anyone else until Tom got home on Friday. Therefore, I kept it to myself and tried to hide the feelings of panic and fear within me. I spent my 46th birthday on our front porch with a glass of Chardonnay tears pouring down my face. I could not stop crying.

I took my first Sinemet on Thursday morning and went to work as usual. It was hard to focus on working or to concentrate on anything other than what was happening. I could not wait for the day to end. Tom came home that night. Thank God. I told him what had happened at the doctor’s office and what Dr. Williams had said. He was supportive and calming. However, I knew he was scared for me too.

We went out to dinner that night to celebrate my birthday. Our daughter went with us. We had a wonderful dinner. For some reason we decided to tell her about my probable condition at the restaurant. Maybe it was because we were in a public place and could keep things lighter for all of us. She was visibly upset about it and was even angrier that we had shared the news with her at the restaurant. Since then, she hardly brings it up or asks me about it as if she has tried very hard not to think about it and go on as normally as possible.

On Friday morning, I took my second pill and went to work. By that afternoon, I felt like I had more energy. My friend Cathy also noticed. I was walking faster than I had been and I was actually able to keep up with her. After she said something, it confirmed what I had realized, that the Sinemet was starting to work.

By Saturday, I was showing definite improvement and although we were happy to see the difference in me, Tom and I knew that the results meant I had Parkinson’s. It was the first weekend in months that I was able to actually clean, do laundry and catch up a little around the house. It made me feel like I was on speed. It was wonderful until I realized that was just the difference between where I was before and where I should be normally. I knew then how really sick I had been feeling. I was very happy to see the improvement but there was a real fear in knowing that the change was a confirmation of Dr. Williams’ diagnosis.

Tom and I went back to see Dr. Williams the following Wednesday at which time he confirmed that I had “idiopathic young onset Parkinson’s (“idiopathic” meaning unknown cause). My life at that moment had just changed forever.

The year before my diagnosis, in November, our son and his girlfriend had a baby. She was our first grandchild. Although unplanned she was very much welcomed. My father had passed away in July that same year missing the birth of his first great-grandchild. My father’s father coincidentally also missed the birth of his first grandchild, me, by a month. My granddaughter became a blessing and a reason to hope for a bright future. She brought much needed love and happiness to our hearts. Her timing was perfect. She was truly a gift from God. He sent me an angel to love and treasure giving new meaning to my life. I was a grandmother. Our son and his new little family lived with us during this time for about a year. They needed a place to stay and be together until they could afford to go out and get a place of their own.

We will never know for sure if the events leading to my finding out I had Parkinson’s disease was a contributing factor, but we often wonder. Did stressful events, i.e., the passing of my father, our son’s unexpected child and my work environment have something to do with the “early” onset? Perhaps I was predisposed to the probability of having Parkinson’s as an elderly and those events triggered it coming out. The answer we will never know.

”Work I remember having little panic attacks every time the door opened. Sometimes I thought I would jump out of my seat. The flush that came over me and the fear that somebody would stop by my desk and ask me to do something for them. I would do it of course but not without going over it in my head slowly writing it down, or trying to write it down. Just go away. Please go — just give me the assignment and go away. Please no interruptions before I get this done. Oh.. I am so afraid that I’ll forget what I was supposed to do for him.. and what if she comes in and asks for something. I suddenly snap myself out of it. They went past me to Mr. Swanson’s office. The phone is ringing. I need to answer it. Hope I don’t have to write anything down . Remember his name. Now if I let it go to voice-mail, I can listen to the message later over and over again until I get it. down”.

My job had proved to be too stressful which seemed to increase my symptoms. I was ineffective at my job, I could no longer multi-task nor read my own handwriting. I could not remove staples or even apply enough pressure to use the stapler. I would drop files. I was slow in writing which only made it more difficult to take telephone messages, especially phone numbers correctly. My hands would cramp close and I could not open them for a minute or so. I would catch myself falling asleep at my desk after taking a pill. There was always an adjustment period of approximately 30 days whenever my dosage was increased. The increase caused drowsiness until I built up a tolerance to the medication. I was always fatigued and the commute became increasingly more difficult after a long day at the office.

Cognitive impairment is what they call it. Under normal conditions, I appeared and functioned fine. However, add stress, fatigue and a demanding and busy work situation and you get what is described as slight slowness of thought and slight difficulty with memory and word retrieval. As the disease progresses, these difficulties worsen increasing problems with speed of thought and memory and deficits in attention. Hyperkinesia and impaired control of distal musculature can cause micro-graphic (writing reduced in size) and activities of daily living become very difficult.

I realized that my career as a Corporate Paralegal had ended. The decision was made, after discussions with my treating neurologist, that I be placed on disability. The primary goal was to reduce my stress level thereby possibly postponing the progression of the disease and improving the quality of my life for as long as possible.

My neurologist sent me to see a specialist at UCLA for a second opinion, to confirm or not his diagnosis. We made the long trip to UCLA a couple of months later. That was how long it took to get an appointment to see him. They saw me, took a history of me, examined me and had me take some tests. The neurologist and his colleagues excused themselves and went to another room to discuss their findings. My husband and I were both very nervous. I know I was. While we were sitting there waiting, I kept thinking that maybe they would come out and say Dr. Williams was incorrect in his findings and I did not have Parkinson’s. Nevertheless, that was not what I heard when the doctor came back a few minutes later.

The doctor sat down and very calmly said to me, “Yes, we confirm you have idiopathic Parkinson’s. If there is anything you need, let us know”.

In an effort to make me feel better and offer hope, he added; “You are young. There is time. By the time the disease progresses in five to ten years they will surely have a cure.” I would be happy to take you as a patient if you so desire, although I understand that this is a distance to come and see me”.

This was not going to be a bad dream. This was real. My hopes of it all being a mistake vanished in an instant.

Shock Of My Life

On a warm summer day with my man just outside,

we watched my right finger as it moved side to side

Can you stop it from moving my husband did ask?

I answered his question with a face like a mask.

We stared at each other and knew this was serious.

That’s when I saw doctors who also were curious.

I heard the diagnosis and learned my prognosis.

The news was a shock and I wanted to scream.

Don’t understand why this is happening to me.

I started to cry - maybe it’s all a bad dream?

Questions were running in my head like a flash.

What will I become and its progression how fast?

There are days that are good and others I’m stiff.

With God on my team I shall bear the dips.

Determined to fight that which has claimed me

In the meantime we pray for a cure to come find me.