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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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nova11723 | @nova11723 | Jun 26 4:47pm
In reply to @lisalucier "@jesslily - that sounds like the reactions are misinformed, as you mentioned, and sometimes (perhaps inadvertently)..." + (show)
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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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@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.

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emmit | @emmit | Jun 29 8:59am
In reply to @nova11723 "@lisalucier My best reaction was someone who said they had three people in their family who..." + (show)
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@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.

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@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.

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kathy49 | @kathy49 | Jun 29 9:44am
In reply to @emmit "@nova11723 I have not told many people yet. this thread is great b/c it's preparing me..." + (show)
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@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.

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@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!

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emmit | @emmit | Jun 29 10:37am
In reply to @kathy49 "@emmit This is OFF TOPIC but reminds me of my daughter when she told a prospective..." + (show)
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@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!

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@kathy49 that put a smile on my face. Hopefully it didn't "flare up" during stupid questions.

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kathy49 | @kathy49 | Jun 29 11:28am

she is in her 30's now and we still laugh about that experience. She did get the job and do well. I have had lunch with many of my friends with the summer weather and I have told no one. Now all this is dependent on meds controlling symptoms. I hope this phase lasts a long time.

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206452751079 | @206452751079 | Jun 30 6:08am
In reply to @nova11723 "I think this is a very interesting topic. Yes, some people can react like that, which..." + (show)
Profile picture for nova11723 @nova11723

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,

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@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?

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emmit | @emmit | Jun 30 1:53pm
In reply to @206452751079 "@nova11723 as a friend of a 73 yr old with Parkinson’s I’m hear to learn and..." + (show)
Profile picture for 206452751079 @206452751079

@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?

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@206452751079 you're a great friend. Hopefully, you get some really good responses to your question. Many times, people with Parkinson's cannot explain why they have certain feelings or cannot do certain things that seem very routine. Your patience and support are great.
Just a thought---"she doesn't like walking into social settings by herself" can you pick her up and bring her to the lunches, so you walk in together? Also, it might be the day or time of day of the lunches that's not working for her symptoms---1:00 on a Tuesday might just be a bad time for her.
hopefully people with a lot more experience respond to you. best of luck and keep up the good friendship

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nova11723 | @nova11723 | Jun 30 2:40pm
In reply to @206452751079 "@nova11723 as a friend of a 73 yr old with Parkinson’s I’m hear to learn and..." + (show)
Profile picture for 206452751079 @206452751079

@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?

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@206452751079

Good question. For me, my issue is usually before the event, i.e. the anxiety how I will walk from the car to the room or the the chair. Sitting in a chair is particularly helpful so I don't have to multitask and just can focus on talking. The less I have to worry about the better, so if you streamline the logistics, it should help. Once I am participating, things tend to go well.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 5 8:54am
In reply to @southwest "@hopeful33250 Correct my main symptom, fatigue, is not well controlled. Levodopa, modafinil did not help and..." + (show)
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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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Hello @southwest

I see that you were starting a follow up course of PT. How are you doing?

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sassytwo | @sassytwo | Jul 16 9:01am
In reply to @206452751079 "@nova11723 as a friend of a 73 yr old with Parkinson’s I’m hear to learn and..." + (show)
Profile picture for 206452751079 @206452751079

@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?

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@206452751079 me too. My good friend’s husband has Parkinson’s and I want to learn more about the disease and how to support both of them. This past year I have noticed great changes, cognitively and significant weight loss but improving with new medications. I suggested twice that my friend may benefit from a caregivers support group or that Her husband might, but she is not interested. I asked if she would mine if I looked into it for myself so I could better support them both. Mostly, I plan caregiving escapes and listen and find that her husband and my friend too, enjoy when I stop in . We live in the same condo building and have mutual friends. Our small gatherings seem to be a comfortable and enjoyable outlet for socialization for both —with my friend being able to retreat home or bed when tired. Or he can stay home and my friend can come as close by. It is difficult to leave him for long periods. I know she gets so very frustrated—even as she knows what is going on. He was told he can no longer drive and has lost so much ability to complete tasks that used to be easy peasy. Once a B52 pilot. still engaging conversationist and wonderful quick and quiet humor that I find enjoy immensely. He feels good when he can help me in anyway— so suggestions on ways to set him up for success to be useful appreciated. They are planning a 10 day European river cruise and I know their is apprehension if this will be doable— cane but I think will need a walker. I suggested a porter andUS airport had wheelchair etc. They fly 1st class and are experienced travelers. Suggestions! ??

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