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-   -   Frustrating perhaps but .... (https://www.neurotalk.org/parkinson-s-disease/26171-frustrating.html)

KC Tower 08-17-2007 03:40 PM

Frustrating perhaps but ....
 
Frustrating perhaps but "socially humiliating disease" ..... come on !!!

Thinking of self and others as being "socially humiliated" makes me wonder about the self condidence and sense of self worth that one is operating under both pre and post DX.

What kind of attitude do you exhibit towards others that have some affliction or imperfection????

From Paula's "Mind" thread
Quote:

Originally Posted by paula_w (Post 137120)
This socially humiliating disease can inspire inspiration
Paula

,,, Ken

paula_w 08-17-2007 04:00 PM

KC

I guess you won't like my rendition of Dionne Warwick either.

I find Parkinson's quite socially humiliating - are you dyskinetic? Do you get dystonia? Does your bladder leak?

I fail to see what my pre and post dx level of self confidence has anything to do with anything.

How did i treat others with conditions? i taught them for ten years. Physically Impaired - in Florida.


hmppph
paula

aftermathman 08-17-2007 08:11 PM

KC, you may be made of sterner stuff ...
 
but I am with Paula on this one.

I recently was on a cruise and I was very embarrassed when I had to ask a waiter to carry my tea to a table. When I tell them it is PD there is typically a period of embarrassed silence then they move away (or tell me of an aged relative who had PD and died within 3 years).

PD to me is a "socially humiliating disease", non verbal communication is very important and I hate having lost it.

Neil.

Stitcher 08-17-2007 09:35 PM

Quote:

Originally Posted by paula_w (Post 138012)
I find Parkinson's quite socially humiliating - are you dyskinetic? Do you get dystonia? Does your bladder leak?

How did i treat others with conditions? i taught them for ten years. Physically Impaired - in Florida.

I too am with Paula on this. I know Paula personally. I have visited in her home many times, and for multiple days. I have shared a hotel room with her. I know how her PD manifests itself, and since I don't live in her body, I can only imagine how she feels. I am blessed I don't have dystonia or terrible rigidity, I am fortunate to only be tremor dominate, with gait issues.

Paula is a person who is out there in the forefront in the advocacy community, so self confidence is not a short coming for her. She doesn't hesitate to get behind a microphone when needed...may not like it a lot, but she does it.

And, yes, she was a special ed teacher for those ten years she speaks of.

And, if you ever want to know anything about clinical trials or research, she is one of the ones to ask.

In all my PD years, I can say that there have only been a couple of times when I was selfconsious in public and that had to do with feeling as though I looked drunk, and feared someone calling the cops on me...typically I was sick with the flu of something that caused my symptoms to be especially bad that day.

Okay, okay, I have run on too much AGAIN,
:OuttaHere:

lou_lou 08-17-2007 09:57 PM

hellooo~
 
yes - it can be very embarassing -and sometimes my own family makes me feel like a weirdo - weird or not, I believe we are here for a purpose -
just do not knw exactly why?

this is from a book I was reading -

From our point of view, there are many "crooked" things in life, things beyond our understanding.
Most of the things we consider "crooked" have to do with adversity of some sort or another (we don’t seem to complain much when good things happen to us that are beyond our understanding…).
Who has not thought life "crooked" when "bad things happen to good people"?
Who has not thought life "crooked" when "innocent" children suffer?
We have all heard questions asked (even possibly asked by ourselves) of the form:

How could a loving God let such and such happen? Yes, life, from our point of view, can be "crooked".

paula_w 08-17-2007 10:08 PM

Oh boy gonna try to sneak one in quick. The world has free will - it was granted - how do you think we're doing? lol

Of course there have been other ways suggested, but no one agrees which, even though they are all the same and only reinforced the more alike you allow yourself to see it over time.....IT CAN'T BE TRUE!

It's almost like everyone is programmed to not allow themselves the hope of actual happiness.

Tape over mouth.
paula

Stitcher 08-17-2007 10:18 PM

Paula, no tape needed...well said.

Tena...yes, life can be and is "crooked"

:hug:

paula_w 08-18-2007 12:09 AM

Ken,

could you have misinterpreted my statement, is it any less offensive with explanation or should I just wait and expect another incoming anytime?

:rolleyes: paula

Stitcher 08-18-2007 02:18 AM

Happiness
 
Most folks are about as happy as they make up their minds to be.

~~ Abraham Lincoln

NOW I will go to bed! :hug:

KC Tower 08-18-2007 02:23 AM

Out Voted but still not humiliated ....
 
Quote:

Originally Posted by paula_w (Post 138199)
Ken,

could you have misinterpreted my statement, is it any less offensive with explanation or should I just wait and expect another incoming anytime?

:rolleyes: paula

From Paula's "Mind" thread
Quote:

Originally Posted by paula_w (Post 137120)
This socially humiliating disease can inspire inspiration
Paula


Paula: - note 3
You can expect an incoming about 25% of the time I find something to complain about - I'll cut it to 10% :-)

Explanation is always good but your statement is pretty clear to me.

Your statment to me means that you feel PD is "socially humiliating" either to yourselft or others.

I find that not offensive but unfortunate and especially would not expect you to feel that way It is not any statement made here amongst friends but the fact that you are made to feel that way that makes me feel for you.

Paula: - note 2
Dionne Warwick - ccl

No to symptoms listed but how would you like involuntary bowel movements - give me other leaks anyday - which I do get if I don't go frequently!

Self confidence to me is directly related to things like resistance to unwarranted humiliation.

Would you tell your students that you felt "social humiliation" because of your physical impairment -I think NOT

Neil
Why be embarrassed for asking a waiter to carry your tea- What would you think of the wheelchair bound?
Dont mention PD and just ask them to bring another pot of tea or drink.
Hopefully we will be taking another of the West coast repositioning cruises shortly - or possibly just go direct to Vegas.


thick skinned ,,, ken


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