Hi! Larry:
Very well said.
Considering my experience that my MDS did not want to see me since I
sought a second opinion, I have come to similar conclusions myself. This
gave me added energy to seek out not only knowledge about PD but also its
cure. Needless to say that this forum has been one of the most useful one
in this regard.
Raj
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----- Original Message -----
From: "Larry Wilson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, September 26, 2002 9:02 AM
Subject: Re: What I have learned: for John C. and list
> 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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