Pauline's Story

My battle with Parkinson's began 18 years ago. Symptoms started as an uncontrollable tremor in the pinkie of my right hand. Intermittent, it hardly bothered me. I did nothing about it, told no one, tried to ignore it.

Slowly I developed more subtle symptoms: constipation, loss of facial expression, slowness, clumsiness, loss of manual dexterity, lumbar and sacral pain.

I mentioned the tremor to my PCP and was sent to a neurologist. He found nothing wrong. I didn't know whether to be upset with him or be thankful. However, I knew I had Parkinson's disease, in spite of him. My mother had PD, as did her mother before her. There was also PD on my grandfather's side. I had PD coming at me from all sides.

Getting answers

In 2003 I went to work for a neurologist. After I had worked for her for 6 months I decided to consult with her. She told me at our first appointment that she knew I had PD from our first meeting because of my "blink rate". (PD causes a paucity of blinking.) I had faith in her. After an MRI and a lengthy medical history, she diagnosed me with PD. That was the bad news. The good news was she put me on medication that helped me immediately! But there was a drawback with the medication: if I took enough to really help eradicate the symptoms the medication made me so sick I could do nothing. I nearly passed out several times. After trying many different forms of carbidopa/levodopa we settled on one that seemed to work best, in an amount that helped but did not quite make me sick. I also took a proton pump inhibitor to combat the nausea. At this time I also, after much debate, decided to reduce my work hours. I was 57 years old at this time. I loved my job as a medical assistant to a neurologist. I did not want to quit. I hated to think of myself as someone with a disease.

I continued to work for this neurologist and then for another movement disorder specialist, fresh out of medical school, who offered to help me tinker with my medications dosages to give me maximum control over my symptoms with minimal adverse side effects. We worked together on this until we came up with a better regimen. I worked for this specialist until he left the practice.

At this time I was asked to do telephone triage. I did not feel comfortable with this change in job. In fact, I viewed every change as a major problem. I wanted the safety of what was familiar to me. I did not want to change my desk, change my job, change my car or change anything. I balked at this change, but in the end, I submitted to the change. I had no trouble converting to triage nurse, and I made many friends among the patients I helped. This change worked out very well.

Life is good

All good things must end. When I reached age 67 I retired with mixed emotions. I had many hobbies to keep me busy (reading, genealogy, reiki, photography, gardening) so I did not expect to retire to boredom, and I didn't. But I was not able to do all I had planned to do. I was extremely slow at everything I tried. I was unable to accomplish all I had intended.

It has been a great frustration for me to come to terms with my infirmities and the way they limit my productivity. However, I have made peace with my diagnosis. I do what I can and enjoy doing it. I let a lot of things slide now. No one expects me to be able to keep an immaculate home anymore. I am 71 and I have Parkinson's disease. I deal with it. I have help cooking (my husband does all the peeling, chopping, and slicing, bless his heart!). I hire a girl to come in for 3 hours every 2 weeks to help me clean house. I have given up the need for perfection, although I still keep things very neat.

My life is good.