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Work Woes

Posted Dec 12 2008 3:43pm

My Dad, who died from heart disease about eleven years ago, would roll over in his grave if he knew that I “retired” at the age of 56. Dad died the week before Thanksgiving in 1995.

Dad’s philosophy of life was that if one had a problem, work would be the solution, and if one job didn’t solve one's problem, then two jobs would certainly settle it. In other words, work was the panacea for all of life’s problems.

I worked for ten years after I was diagnosed with Parkinson's Disease (PD) in May 1996. I retired because of PD in May 2006.

And just today, I was stunned to discover when reading “A Few More Facts About Working with Parkinson’s Disease” in My Parkinson's Info Blog (http://www.myparkinsonsinfo.com/articles) on December 19, 2006 that: “In a recent study published in the journal Movement Disorders people living with Parkinson’s were able to continue working, some of then part-time, for about five years on average. Only about twenty percent were able to work for ten years.”

If I would have known this earlier, I wouldn’t have been so hard on myself for retiring at the age of 56.

I found it increasingly difficult to remain in my employment as coordinator of the 240 volunteers at the University of Colorado Hospital.

When I interviewed prospective volunteers, I would slur my words if my medication wasn’t working effectively.

If I conducted a three-hour orientation, and my meds ran out after 2 hours and 45 minutes, my body shook or my hands trembled. I shoved my left hand in one of my pockets, that is, if I remembered to wear an outfit with pockets. My voice became soft, hoarse, and difficult to understand.

I walked with new volunteers through the elaborate hospital maze to help them locate the heath screening department, obtain their hospital ID badges and escort them to their various locations in the hospital when they began volunteering. Sometimes my feet moved properly and other times, I shuffled and dragged my left foot.

My handwriting became illegible, even when my meds were working. When typing on the computer, my pre-PD typing speed of 90 wpm slowed to a turtle pace’s of 9 wpm and was punctuated with errors.

Because of the unpredictability of the disease and meds, driving to and from work was nerve-wracking and traveling back and forth between the two hospital locations was difficult. At the end of the day, I could barely make it to the parking lot, and driving home sometimes overwhelmed me. When arriving home, I often would immediately go to bed until the next morning. PD fatigue had a grip on me.

My boss knew that I had PD, but I had not notified many of the employees and volunteers. Trying to conceal PD from them resulted in more stress on me, which exacerbated my PD symptoms.

I reduced my hours to 36 per week, hoping I could continue working with PD. Unfortunately my workload was not reduced to correspond with my reduced hours. I took a two-month medical leave when I had Deep Brain Stimulation surgery. I was penalized for not achieving my work goals when I was away.

I was afraid of being fired because of not being able to perform the duties of my position. It was a painful decision to leave my favorite position in my 40-year work history.

I only hoped that if my Dad was still living, he would have understood.

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