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Breaking the code of silence: Fear of where PD will lead us limits contact with people in advanced stages of the disease
When I first learned I had Parkinson’s disease, I had many questions and fears. I knew there were support groups near my home that I could turn to for reassurance, but I couldn’t get myself to attend a meeting. My need for answers was not nearly as great as my fear of seeing others in late disease stages and imagining myself in their shoes down the road. It never occurred to me that I might also meet people who were responding well to medications and enjoying life, despite living with PD for many years.   This same fear also kept me from attending patient education symposiums and from getting involved in other Parkinson community activities. I eventually developed a coping strategy that allowed me to begin testing the waters. My husband and I would arrive late to symposiums and sit in the usually empty back row, where all I could see were people’s backs. We would eat lunch on our own, return late to the afternoon portion of the symposium, and then leave early. Making that first step into the meeting room is the hardest. Each time after that, it gets a little easier.   Sometimes we just need a big enough incentive to move us out of our comfort zone. For me, it was receiving an invitation to a cocktail reception for 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 change the course she had charted for herself. I was so inspired by her passion, compassion, and grace that I never once thought about who else was in the room or how advanced their disease was. I had outrun my personal demons.   For a long time, I believed I was the only PWP whose fear of what lies ahead made them consciously avoid those with more pronounced Parkinson’s symptoms. I felt guilty about this and hoped other PWP would not one day find it too uncomfortable to look at me.  top	When I mentor newbies, I tell them that these feelings are the white elephant in the room that no one acknowledges or discusses, though we all have experienced them. When you live with a progressive, debilitating disease, it is natural to project. Some of us get past this in a few months, others take years, and a few never get over the hurdle.   Many of us cope by not thinking about our futures at all, but giving up our dreams to avoid having nightmares is too high a price to pay. PD already robs us of too much. Airing our feelings and fears, and helping each other get past these is the key to weakening PD’s hold on us.

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