A Thorn in My Rose Garden. C. Claire Claire Lucka

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.