Breaking the code of silence:
Fear of where PD will lead us limits contact
with people in advanced stages of the disease

When diagnosed with Parkinson’s disease, I had many questions and fears but couldn’t bring myself to seek help from a support group or attend a patient education symposium. My need for answers was not nearly as great as my fear of seeing others in advanced disease stages and thinking how that could be me someday. I never imagined that I might also meet people who were doing well despite living with Parkinson’s for many years.

For a long time, I believed I was the only person with Parkinson’s who avoided those in advanced disease stages. I felt guilty about this and hoped others would not one day find me too scary to look at. These feelings are the white elephant in the room that no one acknowledges, though we all have them. Sharing our feelings and fears, and helping each other get past these is essential to weakening PD’s hold on us.

Over time, I developed a coping strategy that enabled me to attend symposiums. My husband and I would arrive late and sit in the back where all I could see were people’s backs. We would eat lunch on our own, return late, and leave early.

Taking that first step into the meeting room is the hardest. Each time after that, it gets easier.

Sometimes we just need a big enough incentive to stare down our fears. For me, it was an opportunity to meet and speak with one of my heroines — former Attorney General Janet Reno. Listening to her describe her life journey, it was clear that she has not allowed Parkinson’s to define her or the course she had charted for herself. I was so taken by her passion, compassion, and grace that I paid no attention to the other guests at this intimate cocktail reception. I had finally outrun my personal demons.

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