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

@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?

@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.

@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.

@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!

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,

@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?

@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?

@hopeful33250
Correct my main symptom, fatigue, is not well controlled.
Levodopa, modafinil did not help and made me more tired. I may be getting onapgo infusion, and hope that my body can adjust to it without excessive tiredness.
I am about to start a followup course of PT, the PT is really the single most effective treatment I’ve had.