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

I haven't experienced any responses as hurtful. The person who mentioned her stomach problems simply had no clue how to respond. Most often responses seem to be about someone's lack of knowledge or making assumptions.
It takes time and practice for people to learn how to offer genuinely supportive responses. It's normal for people to respond from a place of discomfort. What I would like to hear is some quiet, non dramatic sympathy ("Oh wow") followed by curiosity ("What's that like? How are you doing?")

@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?

Hi. I was diagnosed, early onset, over 17 years ago. Over the years I've encountered an astonishing range of reactions; from misinformed to compassionate. What's missing most often, is their curiosity about what it means to me in particular. In my experience people have trivialized the diagnosis far more often than they have overreacted. My favorite reaction was from a "friend" who, when I told her I was newly diagnosed, replied only with "I've been having bad stomach aches lately." The one plus for me has been that I care less and less what other people think.

@nova11723 I'm beginning to understand junkies. Sitting there waiting for the meds to kick in (which does not always happen) and that wonderful feeling when everything turns loose. I get a glimpse of the person I used to be.

@southwest You are probably right. Shame because some forms of this disease are difficult but livable with medicine. I think getting the right cocktail of drugs is a difficult process, but when it works, those days (or hours) are nice. Really nice.

Every once in a while, when my mind is clear and stress is low, I get these two to three-hour period where everything is so loose and I am my old self (when the medicine has mostly worn off at night.) It doesn't happen often (maybe every few months), but I distinctly remember those periods, which are usually at night when my medicine has worn off. Anybody else get those? I think mine has a lot to do with my state of mind.

@eojeda1 that is a wonderful thought it has my opinion dead on always saying that I don’t care about what others say bad about me just don’t let me hear it

@teddieann
on behalf of the male species, I'd like to remind people that we often say stupid things but that b/c we're not thinking. Don't let it bother you. continue to be proud of your gait. I too am proud of my gait....if only I could get my right arm to swing. who knows a few years from now I might get a grant from the ministry of silly walks (Monty Python Reference).

@nova11723
"I wonder many people actually have Parkinsons. "
I think many millions more than have been diagnosed.
Who have symptoms, but never happened to encounter a doctor with the training to recognize them. 🙁

When I was a child, my mother, rest her soul, said to me, "If you care what other people think, they will take space in your head and control your thoughts, emotions, and actions for the rest of your life." I was being bullied in school, and this statement made a huge difference in my life. Bottom line, don't care what others think! When it comes to PD, it really is no one's business. For those who can't handle it or criticize it, that is their problem, not yours. Remember, don't let anyone rain on your parade. You are beautiful!

@kathy49 "I also think it depends on how controlled your symptoms are. "

Very true.