http://www.geocities.com/doncyberdadmckinley/
----- Original Message ----- 
From: "vmehra" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, August 25, 2002 10:48 PM
Subject: Wondering


> Hello All,
> This is a long mail. But I am covering two points related to the awareness
> about PD.
> U KNOUW THIS GGOOD IDEA BBUT U KNOUGH HOW DUMB MY KEAYBOARD IS.  I HAVE TRIED IF SOME DAY I CAN GET TYPE FO ME I WILL TELL WHAT I HAVE BEEN THROUGH PASTT 33 YEARS & WHAT HAVE DONE U ALL DONT SEE HOW MANY TIMES I HIT THE SAME LETTER & HAVE TO GO BACK & DELETE 1 SO ANY TIME I CAN HELP SEND 20 YEAR OLD BLOND I WILL TELL HER.  I.Y.Q.
> Firstly what I have noticed here is that all of us, when we joined this
> list, knew so little about the actual intricacies of PD. I didnt know too
> much about toe curling, someone the other day asked about swallowing and
> saliva, someone about food and nutrition, movement problems etc.
> I am not talking about all these issues being discussed in general, I mean
> specifically new members who ask about this.
> I guess a lot of people worldwide have PD, and enough people on this list to
> document some very real and known symptoms and conditions which should be
> distributed compulsory to each new member to have and go through.
> A sort of like a small FAQ's where some of our top discussions and questions
> can be written and should be given to everybody who is diagnosed.
> I think it will also make us know how much we all really know about PD too.
> 
> Secondly, somehow it seems to me that somewhere we are failing to educate
> people about what Parkinson's is.
> You mention Cancer, paralysis, etc, on the road and people have a good
> enough idea. But most people draw a blank even now when PD is concerned.
> I think we need to do more basic spreading of knowledge about PD. That is
> also important coz often on the streets and markets I have seen people
> giving strange looks to someone who shakes or takes time talking etc.
> Somewhere the message that We are okay, its okay to talk to us, we
> understand everything, we are not stupid, even if we talk slowly or in a
> slurred way.......all this must reach across fast to people.
> 
> Even in my family, I remember some relatives while talking to my Dad who had
> PD......they would talk many decibles louder. Made me wonder what about PD
> means that the person is automatically deaf.
> 
> Just wondering whether apart from having this great forum here, we should
> also spread more knowledge about the real desease.
> 
> Take care
> Lavanya
> 
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