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Hello All,
This is a long mail. But I am covering two points related to the awareness
about PD.

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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