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

Posted by kathy49 @kathy49, May 19 10:34am

This is not a question so much as a chance to share experiences. My doctor warned me about the reactions I would get. I am 77 so it is not an early diagnosis. He was right. People have all sorts of ideas about the disease most of which are not accurate. I have mostly only told other medical professionals as it is important in terms of what I am taking and how it might impact other conditions I have. The nurses' reactions are sometimes shocking. "Oh I am SO SORRY. My grandpa died of that" and similar. I really get offended and correct their thinking. I have told few friends and mostly just family. Do other PD patients get those kind of reactions? I find it easier not to tell people now that the tremor is controlled. Any input on this.

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emmit | @emmit | 4 days ago
In reply to @teddieann "@nova11723 My husband told a friend that I have Parkinson’s. The friend asked, “Is that why..." + (show)
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@nova11723
My husband told a friend that I have Parkinson’s. The friend asked, “Is that why she walks funny?” And I have been so proud of my gait improvement with PT! Oh, well.

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@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).

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louismines | @louismines | 2 days ago
In reply to @eojeda1 "When I was a child, my mother, rest her soul, said to me, "If you care..." + (show)
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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!

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@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

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nova11723 | @nova11723 | 2 days ago
In reply to @southwest "@nova11723 "I wonder many people actually have Parkinsons. " I think many millions more than have..." + (show)
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@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. 🙁

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@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.

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goatgirl28 | @goatgirl28 | 1 day ago
In reply to @nova11723 "@southwest You are probably right. Shame because some forms of this disease are difficult but livable..." + (show)
Profile picture for nova11723 @nova11723

@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.

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@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.

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