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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.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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emmit | @emmit | Jun 8 7:56am
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 | Jun 10 10:48am
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 | Jun 10 4:27pm
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 | Jun 11 4:45am
In reply to @nova11723 "@southwest You are probably right. Shame because some forms of this disease are difficult but livable..." + (show)
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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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@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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jesslily | @jesslily | Jun 25 9:14am

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.

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Lisa Lucier, Moderator | @lisalucier | Jun 25 10:56am
In reply to @jesslily "Hi. I was diagnosed, early onset, over 17 years ago. Over the years I've encountered an..." + (show)
Profile picture for jesslily @jesslily

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.

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@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?

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jesslily | @jesslily | Jun 25 12:51pm

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?")

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 25 1:11pm
In reply to @msmsk "I find most people’s reaction to be silent. They don’t know what to say. I try..." + (show)
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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.

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Hello @msmsk
Welcome to the PD support group on Mayo Connect. I appreciate your comment on the importance of exercise. It had been shown that exercise is an important part of the treatment for PD.

What type of exercise has been most helpful for you?

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 25 1:17pm
In reply to @southwest "I was surprised and disappointed that several friends told me something like "Oh well they'll give..." + (show)
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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.

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@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?

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southwest | @southwest | Jun 25 4:29pm
In reply to @hopeful33250 "@southwest It seems that your PD symptoms are not well controlled now. Is my understanding correct?..." + (show)
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@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?

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@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.

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