This is a very personal and difficult choice I have had to make as far as coming to terms with the fact that I have PD and who I have chosen to tell. Even after five years, I am still having trouble wrapping my head around what I have. I cannot tell you enough how many times I have wished I would just wake up and realize that this was all a bad dream. When I feel great (and I mostly do), I smile and laugh and wonder if they got the diagnosis correct. Realistically, I know it is the right diagnosis. It is just that my heart is trying so hard to catch up with what my head already knows is true. Telling others is a horse of a different color.
Where do I begin? I guess just begin where I am. When I was diagnosed, my whole life as I knew it to be, crashed and burned. The shock I felt is unlike any other feeling I have ever experienced. I made two phone calls after I left my Neurologist's office. The first call was to my dad. He was shocked, but very supportive, as I knew he would be. I am sure it wasn't easy for him to hear that his first born daughter has a condition like PD. I shared all the information with him that my Dr. had discussed with me. Here I was trying to convince my dad that I was under the best care possible, when instead he should have been reassuring me that they got it wrong. My Neurologist spent over an hour with me that morning. Rather than focusing on the negative, he turned the conversation around by telling me about the latest research and how stellar new therapies and meds have become. He also noted two things that I have kept in my "back pocket", so to speak. Because I am considered a "young onset" patient and very physically fit, there is lots I can do to slow the progression. He made sure to tell me that he would send me to the best of the best. He must have told me at least ten times how critical it is for me to stay extremely active, and to keep moving! I could see my Dr's. mouth moving and I could hear him talking, but he might as well have been speaking in French, as I had checked out right after hearing "You have Parkinson's". In retrospect, I heard him loud and clear. I simply needed a LOT of time to soak it all in.
The second call I made was to my bestie whom I have known since Junior High School! Coincidently, her dad had PD, but was in bad shape by the time I met him. I remember watching him at the dinner table and feeling frightened by what I saw. Birda (my bestie), had informed me that he had PD. Even though she told me, I had no idea what she was talking about. The first time I met him, I was shocked at what I saw. I didn't want her to know that I was scared of him, so I just retreated. After that first meeting, I remember crying and telling my parents about what I had witnessed. I am sure they tried to explain (I honestly can't remember at this point). I had dinner over at Birda's house a lot, and I kind of got used to seeing him shaky and in a wheelchair. It left quite the scar on me, because I felt really sorry for him. In fact, when I heard those three life changing words, I immediately thought of Birda's dad. As shocked as she was to hear that my diagnosis was PD, she has done an amazing job of reminding me that I am not her dad, and that they didn't have the science (over 50 years ago) they have now to help. She also reminded me that her dad didn't follow protocol. He didn't take his meds like he was supposed to, and never exercised. He is definitely part of the reason as to why I am working so hard to stay well.
Up to this point, I have been very selective about who I tell. Obviously, I have to share this information with the medical community when asked to do so. They have been very supportive in their responses. As far as sharing my condition with others, I have carefully chosen those whom I know will NOT freak out, but rather will offer words of wisdom and strength. Sadly, when I have thought of telling certain people, my gut always leads me to stay quiet. "Bad" news tends to spread like wild fires, and certain people would like nothing more than to plant those seeds.
The typical verbal reactions I have heard stretch from, "Oh my G*d" to "I will pray for you", or "I'm SO sorry". Some are just completely silent. The most thoughtless comments are those who feel the need to tell me about their dad, sister, etc... who had PD and how horrible it was. Those people don't deserve a moment of my time. Other responses have been "You have two choices here. You gonna fight this or give up?" to "Ok.... We will deal with this". Remarkably, there are so many who have never heard of PD. As soon as I say "You know who Michael J Fox is"?, the immediate reaction is usually totally inappropriate. I was one of those people, so I get it. I have become an "educator" for those who panic and spout off before they think about what to say. I have found myself enlightening others about my condition and the different therapies and medicines that are out there to help me. The last thing I need is sympathy. What I do need are true friends who are going to continue to lift me up until there's a cure! It is never easy to hear negative comments, but I am learning to let those reactions slide off my back. I look at PD as a condition, not a disease. In my books, using the word "disease" implies that one is dying. I prefer the word "condition", as I am learning how to best live with PD.
BIrda and Me.... My Bestie for Life