Re: Just an idea and one person's opinion

[Cathy Morse <cmorse@xxxxxxxxxxxxx>]

I  have to agree with Carol, I found this LIST by accident also. Best
accident  I've had in a while.  These doctors  should have,  at the very
least,  a source  list of addresses (both snail and e-mail),  phone numbers,
etc. that he/she can give to newly diagnosed patients as a starting point
for information.  AND PIENET SHOULD have a prominent place  on that
reference list. maybe a general source list for pwp's is the approach to
take.  any thoughts?  Apart from hard core information, this list provides a
support that is invaluable from a whole person perspective  For people like
me whose mobility is limited, it is a god-send. (include SPARKLE in that
too!)  I don't know how many times in the last few months  when just reading
some of the postings has given me a smile or warmed my heart or made me
think beyond my little world to share in the world of others.
I want to share this list with as many in need as  i can reach.  Even with
the petty bickering that goes on at times..

Let's face it, a fair number of us are diagnosed by a general neuro.
Parkinson's is  only one of many diseases they deal with.  Actually same can
be said of a movement disorder specialist. Personally, I don't take anything
I read from any source as written in stone. (I constantly engage my own
filters, for better or worse )And I would be a little suspicious of any
doctor who wasn't open to a source like this one. But as "they" say, "to
each his own.
It never hurts to ask.


fondly,
Cathy
(50, 48,,46)



Michel Margosis wrote:

> Carole Hercun wrote:
>
> > Hi Paul: I am amazed at the paucity of information
> > available in the average neuro's office, even in the
> > medical centers like Johns Hopkins and St.Elizabeth's. The
> > wonderful resource that is this List was only discovered by
> > me (and I'm sure by others)by accident. So please don't
> > shut up. Suggestions, anyone?
>
> The neuro's office is not a library, meaning that it's no place to get
> information unless it comes directly from the neuro himself.  The
> neuro's office is for treatment!
> Public libraries, organizations like the NPF (National Parkinson
> Foundation), APDA (American Parkinson Disease Association), etc. can
> give you mounts of information about the disease and various support
> groups.
> This list is but a tiny fraction of the PWP population and it is fraught
> with misinformation as well as correct information, and it is often
> difficult for an untrained person to differentiate.  Thus, do not accept
> anything stated here unless properly verified or corroborated because
> the wrong information may be hazardous to your health.
> Michel Margosis
> 'Carpe Diem'