Reactions when you tell people you have Parkinson's Disease?

@nova11723 as a friend of a 73 yr old with Parkinson’s I’m hear to learn and try to understand how she is feeling. Your comment about having to put on a performance struck a cord with me. She tells me she doesn’t like walking into social settings by herself and doesn’t come to our weekly lunches as much. Her symptoms are not real noticeable. She can’t explain to me why she feels this way. If the reason is anxiety about putting on a performance, how do I support her?

I think this is a very interesting topic. Yes, some people can react like that, which has made me very reticent to tell anybody except the friends or colleagues who I believe can handle it. Or have seen me at my worse and need to be stopped from gossiping. Only about 10 or so people know for sure, and I was hoping a weight would be lifted when I did tell them, and in a sense it is, but then comes the part they don't tell you about. The part where you don't feel better and you still have the disease and now one more person knows about it. So I feel that I should never confirm unless absolutely necessary. But sometimes, it is necessary. Otherwise, the anxiety may consume you, or at least, that's how I felt.

By the way, the anxiety I am referring to is having to put on a performance all the time. I find that very tiring,

@emmit This is OFF TOPIC but reminds me of my daughter when she told a prospective employer that she has dyslexia and they asked her how often it "flares up"!! True story!

@nova11723 I have not told many people yet. this thread is great b/c it's preparing me for the WEIRD. that is certainly an odd question. I'm thinking about using "I wouldn't get too close" as a response.

@lisalucier
My best reaction was someone who said they had three people in their family who had PD. One asked if my sexual organs still worked. Not sure I would classify that as positive.

@jesslily - that sounds like the reactions are misinformed, as you mentioned, and sometimes (perhaps inadvertently) hurtful.

Wondering if you'd have an example you could share of a helpful response you've received to telling someone you had Parkinson's?

@southwest
It seems that your PD symptoms are not well controlled now. Is my understanding correct? Have you been involved in physical therapy for PD?

I was surprised and disappointed that several friends told me something like "Oh well they'll give you some pills and everything will be OK."

And then they would ask me what Parkinson's is, as they did not know anything about it. They were just trying to say something encouraging I guess.

For me, the standard go-to meds have not been effective in reducing my symptoms. So it's not as simple for me (and many others) as just popping a pill and going on from there.

I find most people’s reaction to be silent. They don’t know what to say. I try to stay focused on acceptance and learning what the disease can teach me. I had prodromal symptoms for many years, diagnosed a year ago. I hope all of you have found or are looking for an exercise group made up of people with Parkinson’s. It helps a lot in many ways. My movement disorder specialist says exercise is the best thing we can do.