I met a fitness trainer who washed her hands frantically on hearing I had PD.
Tried to tell her it wasn't catching but she was too panicy to hear me.
Amanda

Quoting Moneesha Sharma <[log in to unmask]>:

> 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 course, was learning from text-books that were six years out of date.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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