Re: THE HOW DID WE GET HERE ANWAY SURVEY

[Edith Love <elove59@xxxxxxxxx>]

 I'm with you, Ray.  It will be interesting to see the outcome.

 Re the size of the survey:  If I remember correctly, it was to 12 pages.
No smaller version was/is sanctioned by us.  As a matter of fact, I believe
the original was between 14 and 17 pages which we shortened to 12.

Once Mario completes the stats, we'll send an overall evaluation for those
who initially participated.  The evaluation replaces what we called COMMENT
areas in the original survey.

I agree with you!  My condition, along with everyone else's I'm sure, has
taken a different path since I submitted my survey.  That's to be expected.
Remember, that we were/are looking for commonalities that helped to get us
where we were then, i.e.,  The BENCHMARKS in the park our personal paths
have taken that carry similarities that we might share not from 5-15 years
before diagnosis but from birth.  Something like this:

Genetic Mutation at Birth + Commonalities (Inherited Syndromes, Diseases,
Allergies,  Side    Effects,etc., ) + Environmental or Traumatic Factors +
Stress

Our aim was intended as an individual study with questions like:  Why, in a
family of 4 is one diagnosed with, as an example,  PD, while the other is
perfectly healthy? ad infinitum.  Most importantly what do the members of
the PD family have in common?  Is there a relationship among them?

 Thank you for your kind words.
  E




From: "Rayilyn Brown" <RayilynLee@xxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Tuesday, January 14, 2003 9:25 PM
Subject: Re: THE HOW DID WE GET HERE ANWAY SURVEY


> Edith,
>
> I noticed that the survey form you posted was much longer than the one I
> filled out. originally.
>
> Also, in the year or two it has been in process, my condition has changed,
as
> has probably that of others.  What a complicated job!!  You guys are  to
be
> commended.
>
> Surely you and Mario must have come to some conclusions.  I'd be
interested
> in hearing them even tho they may not be "valid" because of the size of
the
> sample.
>
> Ray
>
>
>
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