Re: News-Brain surgery helps severe Parkinsons

[Barbara Mallut <barb_msn@xxxxxxxxxxxxx>]

Rosemary, and All....

While I agree with you in your comment about the  "age of onset
factor,"  and information being disseminated by the major PD
organizations, personally, I don't think those organizations (however
worthy)   have a clue about the rising tide of young onset Parkies,
and their. our... ever  increasing numbers.

IF they did have an awareness of the numbers of younger onset
Parkies, they'd stop sending out their informational pamphlets, in
response to inquires, etc.,  with pictures on the pamphlet-fronts of
elderly persons ONLY!   Virtually all references in those pamphlets
regarding the AGE of PWP's indicates them as being "older," if not
down right elderly.

Not only that, but dammit....  those elderly folk  pictured on the
covers of PD organizational material are always SMILING and jolly
looking! <rueful grin>

IF ya go by the pictures and the text , it APPEARS as tho average
Parkie hasn't a care in the world and everything is pretty darn
tolerable for those living with PD.   Take a look-see at the faces
and bodies (not a walker or wheelchair in sight) of those
presumably-people-with-Parkinson's  pictured in current PD
informational literature and it becomes obvious that the national PR
organizations are still living in the past when it comes to
age-of-onset, AND severity of the disease as it affects so many of
those who have it.

I see this as an unconscious (hopefully) attempt to "sugar coat" the
picture of the average PWP's life-experience coping with the disease,
so as not to scare away the newly diagnosed and the monied
contributor, as well.

Barb Mallut
barb_msn@xxxxxxx

-----Original Message-----
From: Rosemary Russell <Rruss12345@xxxxxxx>
To: Multiple recipients of list PARKINSN
<PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Date: Thursday, October 15, 1998 9:39 PM
Subject: Re: News-Brain surgery helps severe Parkinsons


>I think Keith Chancey raised a very good point in re to the "age of
onset"
>factor.  I was diagnosed at 46 (had symptoms years earlier) by a PD
>specialist.  He told me that "young-onset" PD was, in fact,
increasing --
>mainly due to exposure to toxins and chemicals.  I later found
reference to
>what he had told me in a journal article which concluded that yopd
had
>increased at "an alarming rate within the last 2 decades."
>
>Because of this, and not because I place less importance on elderly
>Parkinson's,  I think the public mainly needs to be reeducated about
>Parkinson's disease.  Unfortunately for us, both the public and the
media pay
>a great deal more attention to "official" information, i.e.,  the
APDA, NPF,
>or any such group with a title.  If they can get the educational
information
>to the public I think it will be the beginning of a change.
>
>Rosemary Russell    50,  5yrs.
>Little Rock, Arkansas
>(Rruss12345@xxxxxxx)
>