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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 course, was learning from text-books that were six years out of date.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 > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto: > > [log in to unmask] > > In the body of the message put: signoff parkinsn > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------- This mail sent through http://www.ukonline.net ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn