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I don't want to belabor the point stated below but let me tell all the PD
community that "with ignorance" comes better information.  My brother's PD
diagnosis has been somewhat of a calamity of errors over the past 8 years
(or more) and his plight now is one of existence.  He is where he is
presently (nursing home) because of 1) lack of diagnosis of PD initially, 2)
lack of understanding  of PD by the family after the diagnosis, 3) lack of
educating the family (by the doctor) on PD,  4) lack of "action taken" by a)
the Neurologist  and b) the family (ignorance of what to do) and  5) Lack of
understanding and action by the nursing home where he is presently.

From my point it appears that the person having PD and then the family are
the primary "physicians" of the patient.  The DR. comes into "play" with
little responsibility to the patient unless "family" demands it.  Merely
taking him to the DR. does not guarantee any results.  The intelligent
action of the patient himself determines his fate.  The family must become
intelligent on the disease to take action to "stall the symptoms of PD".
Failure to do so "probably" will result in a less mobile person and in my
brother's case - nursing home.

Whether it is PD, PD symptoms, or "look alike PD" does not matter - what
counts is the "intelligent factor" of the patient or the family must demand
better care/treatment from the DR.  In our case our "intelligence on PD"
came too late.

I regret I feel most of the time the DR plays a secondary role in the
accurate diagnosis/treatment of the patient.

It is a helpless feeling.

Larry Wilson


----- Original Message -----
From: <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, August 26, 2002 12:56 AM
Subject: Re: What I have learned: for John C. and list


> Kathleen,
> Well said!  I wanted to reply to John C.'s e-mail, but I didn't know how
to
> articulate what I felt.  You've done it for all of us.  I've wondered many
> times if my Mom's diagnosis was correct simply because her symptoms didn't
> match anyone else's.  When Deborah thought she had PD, her info and
insights
> were welcome, but now they're not?  Thanks for speaking up.
> I also agree with everyone else who replied--there is no way anyone could
> characterize the discussions about Deborah's situation as banter or
> entertainment.
> Eleanor
>
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