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Thank you, Jim.  I absolutely agree with you on this.

It is quite shocking that professionals should be getting so little
understanding of this illness during the course of their training.  And as
for the general public !! I was asked the other day if my husband has the
palsy - (a) I did not know that this was a word still in use for ailments
other than cerebral palsy and (b) he has no tremor, so it seemed
particularly inappropriate.

Yes more information needs to be out there, easily accessible, that this is
a disease of the CNS and yes, the name needs to be re-thought.

Moneesha




2009/8/20 Jim Slattery <[log in to unmask]>

> Dear Moneesha,
>
> The idea for changing the name of PD came about at a round-table conference
> as
> to what ways we  could promote awareness of PD, and at the same time raise
> the
> awareness of doctors and para-medical people (nurses, physios, etc) of the
> practicalities of dealing with PD.
>
> We, and by "we " I mean the ordinary people in the equation, have little or
> no
> chance of influencing the search for either a cure, or a preventative, for
> PD;
> neither do we have any chance of coming up with a more efficient
> medication.
>
> My GP told me that he had had approximately one hour of lectures on PD, as
> part
> of a total of six hours for neuro-degenerative disorders, in the whole of
> his
> internship. My niece, during her nursing training, in the neurology part of
> her
> course, was learning from text-books that were six years out of date.
>
> WE have to try and get the information on PD updated, and we have to get it
> recognised as a disease of the Central Nervous System (CNS), by whatever
> name we
> call it. We have to try and have the information readily available for
> making an
> informed diagnosis. And we have to shorten the time taken for positive
> diagsosis.
>
> I was watching TV during my lunch-break, and the host of a program was
> interwiewing a young woman. She said that she began to have symptons of PD
> at
> the age of 23, and that she was finally diagnosed at the age of 27. She
> said
> that she had had a terrible tiime getting a positive diagnosis, as the
> doctors
> to whom she went did not believe in the range of systems she presented, and
> were
> of a common mind-set that her symptoms were psychological, of unknown
> cause.
>
> In the mind of the general public, PD is seen as at best a simple movement
> disorder, and at worst a psychiatric disturbance, with all that the
> implies. And
> it is certainly not seen as a disorder of the young.
>
> Jim
> ----------------------------------------
> Doctor J.F. Slattery PhD Soc Sc
>
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