My family and I had recently moved to the Atlanta, GA, when I noticed a slight Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use. in one finger. After several months, I had it checked out. My doctor eventually diagnosed me with Parkinson’s disease (PD). It was 1982 and I was 38. I knew very little about Parkinson’s.
I told my close friends and family, but at the time my symptoms remained unnoticeable so I went on with my life. Years went by and gradually my days began to revolve around my medication and how I felt. I began to hide when my symptoms, staying home when I didn’t want anyone to see when I was stooped over, had facial masking or shaky hands.
Last summer, my neighbor’s grandchildren stayed with her for a week. She asked me if I would like them to visit me one day. I would normally have been thrilled at the thought, but I remembered my last meeting with them when the 5-year-old asked me, “why does your head go round and round?” His grandmother, not wanting to embarrass me, quickly ended the visit. The look on the little boy’s face haunted me.
This fall, when my neighbor asked if they could visit again I really thought about it. I knew I would have to carefully plan their visit around my “on” time. But remembering the look on the little boy’s face made me realize that maybe it was time to tell the truth about my strange behavior. I first checked with the childrens’ parents and grandparents to see if it was okay to tell the children about Parkinson’s. When they agreed, I began to plan the children’s visit.
When they arrived, I asked them if they noticed my symptoms. They admitted they had. We spoke about the brain. They were fascinated to learn that my brain had a tiny part that wasn’t working right.
I wrote a poem for them about Parkinson’s. Children are often curious when they see my symptoms and this is my attempt to lightly introduce the subject.
“My Grandpa Has PD”
My grandpa has PD,
PD, PD, PD.
Sometimes his hands will Shake,
Shake shakey shake shakey shake.
Sometimes his head will wobble,
Wobble, wobble, wobble, wobble, wobble’
Sometimes he will walk soooooo
Slooooooow. Soooooo slow
My grandpa has PD,
PD, PD, PD.
During their visit the children continued to ask questions. My favorite one was if my medicine was actually working. The next day when I saw the children they were curious as to how I was feeling. I realized that they were more comfortable with me now that they knew the reason behind my shaking and moving. I knew that I had to start letting people into my secret life. I learned that people are curious and willing to help. These little children had a lot to teach me.