The Parkinson Foundation Women with Parkinson's Support Group put together some thoughts about living with Parkinson's disease. Click here to learn more about the group.
When I was diagnosed, I thought…This couldn't possibly be true! How was I going to deal with this? What the ****? It was over… There must be some mistake. I'm too young to have Parkinson's and besides no one in my family has it. Well, it could be worse. I think I will take the meds, stay positive, and continue to live. This isn't going to kill me. I had done plenty of research, and knew that there would be challenges as the disease progresses, but I was optimistic that medication would help me continue to have an active life, and that I would continue to educate myself about the disease, because I believe that knowledge is empowering. It’s not the end. I take it day by day. I was relieved. My symptoms had started years before I was diagnosed. Finally, this thing that had changed my life had a name and I could begin to fight back.
My family's reaction to my diagnosis was....Ok Mom, it is what it is; now let’s exercise and go on. Oh my, what are you going to do? One of support and compassion. Mixed... Some were indifferent since I didn't "seem" sick - others were very upset. Shock Are you serious? That can't be true! They were concerned and a bit shocked. Indifferent--I think because we tend to just handle things as they occur. Also I had an uncle who had it. They did not have an understanding of how troublesome it can become. To just deal with it and carry on my normal life. We were all sad, but not ones to wallow in our sadness. Positive yet surprised. Shock and sadness, but supportive.
Did you tell your co-workers, if so how did they react?No, not right away. Some expressed compassion others were speechless. I had just retired, so I didn't have co-workers. But slowly when the time presented itself, I told all friends and family. Mixed reactions; some were visibly upset for me; most did not know what to say. A couple of them had figured it out. Others were completely stunned. I was a homeschool mom at that time, so my co-workers were fellow homeschool moms; and yes, I told them. Most were very compassionate and concerned. I told only a few close friends. After initial reaction they were curious, asked questions and continued with the bridge game. Other than that I have not directly mentioned the PD. If anyone asks, I own it! I did inform my co-workers. They asked a few questions and demonstrated support, although they had very little knowledge of the condition. I had retired right before my diagnosis. My former co-workers suspected there was something seriously wrong. They continue to support me with their friendship.
If people treat me differently because of my PD, it makes me feel...