My friend Janet remarked how much I have changed during the past couple of years. In the past, when someone asked about my Parkinson’s Disease (PD), my typical response was “I don’t feel comfortable talking about it.” However, during the past year, I’ve become a PD advocate whose mission is that of educating others about PD. I talk to others in person, by telephone or online daily about PD. In fact, sometimes I go out of my way to introduce the topic of PD.
My biggest regret along my PD path was not sharing with others about my struggles with PD. I knew that if I didn’t share about PD, others such as my husband, Tom, and previous accordion teacher, Alice, would bail me out by speaking for me. I never knew who knew about my secret, and what they knew.
I was ashamed about having PD as though it was my fault that I had this malady. I was living a lie. I insulted people by not sharing my life with PD with them. I deprived people of the opportunity to provide support.
When I started hearing rumors at work that I had MS, I knew that I had to come clean. In March of 2005, I met an online friend, Joel, who shared his email that he sent to his friends about his diagnosis of PD. He was overwhelmed by the positive responses when he disclosed his PD. Joel told me that it took a lot of courage, but it felt like a huge weight was lifted.
On Monday, April 4, 2005, I decided it was time to stop concealing and start revealing. I sent an email (or message by regular mail for those without computers) disclosing my PD to more than 300 friends, family, work associates and hospital volunteers. I ended my “coming out” story with: “Having Parkinson’s is no longer a taboo subject for me. Please feel free to bring up the topic and ask questions. I may provide more information than you ever wanted to know.”
Tears streamed down my face when I hit the “send” button on my computer. Within two minutes, I started receiving supportive responses by email as well as a steady stream of telephone calls. By the time that everyone had received my message, I received over 150 responses – all positive and supportive. I’ve saved every response and read them when I need a lift. Like Joel, I too felt tremendous relief.
My life is different now. When I dropped $85 of coins on the floor of the bank, it provided an opportunity to explain to the teller that I had PD. When I couldn’t fill out a mailing form at the post office because my PD fingers and I told the clerk about PD, her response was, “I’m more than happy to help you with that.”
Although I have regrets about how I handled the topic of PD in the past, I am currently providing others the opportunity to give support and am delighted to be receiving lots of it.