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Appropriate Response


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#21 Mihai

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Posted 24 March 2013 - 09:42 PM

Good question,

I try to be honest, but keep it as short as possible. Others here have said that people don't understand YOPD...bingo! Everyone thinks my dyskinesias are tremors... When I explain that I don't have tremors, then they don't understand how I have PD... So, I explain about bradykinesia and rigidity... And it just gets more confusing. I find it a good rule to say more to those who are close and understand...and say less to those who just don't seem to get it. The simpler, the better. I'm all for educating the public, but sometimes I just don't feel like hashing through the whole thing again! I feel your pain...

So, do you still have PD?

Peace,
Mihai

#22 DANCER

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Posted 25 March 2013 - 07:39 AM

PD is so hard to explain in a few sentences. How I feel changes minute to minute. I have good minutes and bad minutes. I think people that ask how I'm doing really mean well. A lot of people tell me I look great - I want to say I feel like crap, but I just say thanks. I think it depends on who asks me. If it is a good friend I give more details otherwise I say I'm doing great.

#23 Island Woman

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Posted 25 March 2013 - 08:50 AM

have to agree with you Dancer...some times people don't want to hear...just say doing ok...thanks for asking

Patricia

#24 roy g

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Posted 25 March 2013 - 01:14 PM

I'm ok. How about those Phillies?

roy g

#25 DANCER

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Posted 25 March 2013 - 02:23 PM

I'm ok. How about those Phillies?

roy g

Roy thanks for a good laugh!

#26 Luthersfaith

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Posted 25 March 2013 - 03:18 PM

The experience continues...

I keep it simple: "My brain is broken, I tell my legs to go and they say no. Big steps like stairs are easy, little steps like turning at the top of the stairs is hard. Running is easy, walking is hard."
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#27 Ken_S

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Posted 31 March 2013 - 10:49 AM

My problem question is “How long have you had Parkinson’s?”

I usually say that that is a darn good question and that I don’t know.
But as I’m telling them that, I’m thinking: What are they really asking?
So I find myself struggling with giving them a quick simple answer verses the more complicated real answer. I don’t want to dampen someone’s sincere curiosity but than again nobody—other than my doctor--wants to hear my medical history. How do you guys answer this question?

Improvise, Adapt and Overcome


#28 Luthersfaith

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Posted 31 March 2013 - 11:45 AM

I say I was diagnosed a few years ago. But I probably had it for 15 to 20 years before symptoms showed up. I tend to have a joking tone when I talk to people about it. Saying things like "You wake up one morning and your whole life is changed." I try to keep things very light. I usually end by saying 10 out of 10 people die I just might die a little sooner than I thought. Then I ask them " are you ready to die?"
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#29 Golden01

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Posted 31 March 2013 - 01:18 PM

When my husband started the disability process, his internist taught him to say, "I have Parkinson's Disease, it is a progressive neurologic disorder." We'd practice before the calls with the disability specialists! The doctor also gave him these words to say "My doctor says I cannot work". Practicing that kept us from going down paths the disability interviews sometimes started down, How are you, fine, etc. Those polite answers could lead to a whole different line of questioning. We found the disability folks (two private companies, he never had to interview with Social Security) did not know anything about PD so the line about "a progressive neurologic disorder" came in handy more than once. We found it important to tailor what we said about PD depending on who was asking.

#30 christie

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Posted 31 March 2013 - 03:16 PM

My problem question is “How long have you had Parkinson’s?”


Are you kidding ? That's a piece-of-cake question !

-How long have you had Parkinson's?
-What makes you think i have Parkinson's? (try to sound offended...)
-Didn't you just tell me that you....never mind. i'm sorry. i probably got this wrong.
-Don't worry about it.
(end of discussion...)

Happy April fool's day, everyone ! ! !

Edited by christie, 31 March 2013 - 04:25 PM.

English is not my first language !




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