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-------Original Message------- From: Sami Date: 8/22/2009 11:49:02 AM To: [log in to unmask] Subject: Re: A more suitable name for PD. Your fitness trainer isn't the only one out there, Amanda. Before I moved to Arizona, a friend and I tried to join an exercise club called Curves. The owner had never even heard of the initials PD but when she was told what it was, would not allow us to join. This happened in a town of approximately 5000 where we lived side by side with a number of mentally challenged young people ranging in age (and I'm guessing here) from 10 to 20 who, along with their caregivers, were welcome everywhere. I don't understand the Mindset of people who can/will accept the mentally challenged, but who freak out at the mention of PD. -------Original Message------- From: [log in to unmask] Date: 8/21/2009 11:00:43 PM To: [log in to unmask] Subject: Re: A more suitable name for PD. 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] ca > 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 ____________________________________________________________ No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.392 / Virus Database: 270.13.64/2318 - Release Date: 08/21/09 18:06:00 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn