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MarkH

How do people react to you when they know you have PD?

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I always get sympathetic reactions for having the disease, but I want people just to treat me normaly. How do people treat you? Do they try to make you feel better?

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Most people don't know much about PD (I didn't until I was diagnosed). People are usually surprised and tell me how great I look. Don't want to tell them I feel lousy so I just say thanks and usually change the subject.

 

I have very good friends that are willing to help me when I need it. It's hard for others to know what to do. Sometimes I don't want help..just want to do things at my own pace.

Dancer

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If i tell anybody - they always tell me I am too young to have Parkinson's Disease. Though it seems like most people think of Michael J Fox when you mention PD and we are similar in age. I have found that if I change the subject quickly they forget about it. It is a difficult disease to explain to people because everybody knows about Parkinson's Disease but I don't think we know anything about it - after being diagnosed in 2007, I have only recently started to find out about the disease myself. It has helped me to learn more about the disease in the last few months. It makes it easier to deal with people when I tell people I have PD. Though I still don't know anything about it.

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Relatives ignore it.

Friends say sorry and listen.

Neighbors say "I noticed him walking funny" and "we know 'so and so' who had it too."

Overall everyone has been kind.

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According to my own experience, the main problem with YOPD is that most people don't know anything about this disease. our duty to "train" our relatives and friends on our own illness can be very very frustrating.

 

Of course, the way other people react to us, is -also- the reflection of our own attitude. Therefore, i think we should try...

-keep as high as possible our self-esteem, our emotional strength and our functional independence.

-avoid discussing our problems with people who fail to understand them.

-don't pay much attention to what other people say, think etc...and

-keep our minds busy doing the things we love...

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Nicely said Christine. When I tell people that I have YOPD many people feel sorry for me, which is the last thing I want. I feel like the more people know about the condtion in general the better of we are. Everyone that I have told has been completely accepting of the situation and willing to help in any way possible. Before I was diagnosed I was very independent and once I was diagnosed I had to learn to ask for help which took a lot of courage for me to do. My friends and family have been amazing you just have to feel out when is the right time to tell people and be ready to answer questions. Being an elementary education major I had the opportunity to reveal to my students my situation and was extremely surprised by how well a class of first graders took the news and treated me as a human being and how patient with me they were. It showed me there is still hope for us.

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I tell people then take the time to educate them on PD before they make dumb statements like " it's just a shaking hand isnt it?" or "you will be fine they have pills to cure it now"

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I'm in the "honeymoon phase" which I guess means that you look normal on the outside but feel lousy on the inside. I think some of my family thinks that I was misdiagnosed because I'm not jerking around and stumbling. Mostly they ignore the whole issue (most have not even acknowledged it). Most of the time this is okay with me. It becomes a problem when they expect the same level of energy I used to have (for example my sister and family are coming to visit for a week this summer and I am full of anxiety because I don't think I can handle the stress of feeding and entertaining them). There is so much information on the internet about PD. You would think that loved ones would take the time to educate themselves so that they could better support the person with PD.

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Hi Gardener,

 

I share your frustration with family members not being willing to learn how PD affects us or even discuss the issue. I went walking with my dad this morning and for the first time since I was diagnosed in late 2010 he said, "So, what do you have? Parkinson's?" I gave him a little information on dopamine loss and exercise being neuroprotective. My mother knows all about my appts, but doesn't understand the fatigue. I thought she was filling in my dad about my diagnosis but maybe she's not. That's just crazy. Apparently if I'm not around and don't bring it up, they ignore it. That doesn't keep me from taking frequent rest breaks at family functions. I'm firm about that. I believe they are afraid to know the full details, so I just give information in very small doses when they seem interested.

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I think that people really don't care about Parkinson's Disease until they have it - it's not personal to them. And if you don't care about it, you're not going to take the time to educate yourself about it. I can't seem to educate my fellow nurses about PD, let alone my family (other than my wife). It seems like I can talk for an hour and all they walk away with is "it's a shaking thing." Lol! <Banging head against brick wall>

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RN,

 

And the brick wall therapy.Any break throughs? Volunteer study?

Seriously,in your profession, I can see your frustration. But for a lot of us, incurable diseases was just not summer reading.

As I bobble this keyboard, I wish I'd never heard of dopamine and that "Back to the Future" was the extent my knowledge.

I now know "it's a shaking and stress thing."

 

roy

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