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I agree with Greg. The mood swings are so bad,but according to this neuro I have been going to I don't have PD. I don't understand his thinking. If a large amount of symptoms are there then what is going on?? Can some one explain (on-off) and is there a certain amount of time or is it different for everyone? Shirley ----------------------------------------------------- Click here for Free Video!! http://www.gohip.com/freevideo/ ----- Original Message ----- From: Chris van der Linden <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, March 08, 2000 6:49 AM Subject: Re: Rating scales. Was: Long term prognosis > > > Dear Rita and others, > > As a movement disorder specialist I know the impact on daily living for > Parkinson patients very well. > However, to use a scale to score this impact is not easy and therefore > conventional scales are used. As a matter of fact the Hoehn and Yahr scale > and the Schwab and England scale are more than 35 years old and still being > used, which tells you something about the difficulty of creating a newer > scale. Scales are usually designed by the physicians for research purposes > and should therefore be very objective. A scale measuring the impact on > life has many subjective features and therefore not used by clinicians. As > a matter of fact they may not even be interested in such a scale. It would > be wondeful, considering the extensive use of the internet, that patients > should come up with suggestions to create a scale for themselves to be able > to give other fellow patients an idea on their condition and to have an idea > of the condition of the person they are "chatting" with. > Anybody interested?? > > Best regards, > > Dr. Chris van der Linden > > I think it does prevent all but the "most open minded" neuro's from > > comprehending the impact of the PD on daily/family living. I have also > > suggested a questionaire for the Carepartner that could be a checklist > > completed in the waiting room (most of us have plenty of time > > there!)....which could be helpful in the evaluation/suggestion/ > > modification/communication of treatment/medication. > > > > The other thing I notice is that as we "accept" the limitations of the > > progression of PD, the answers to some of the questions on the UPDRS > improve. > > What bothered me in the beginning, may seem insignificant now in the > realm > > of everyday living and frustrations. Also my "mood" when I am asked these > > questions may vary.........if I am "on", I will answer one way..........if > I > > am "off", I will usually give a more positive answer. This seems a bit > > different than one might anticipate....but when I am "off" I do not want > to > > talk, elaborate, define, think.........so therefore give the answer that > will > > require the least followup information from me. > > > > So, how do we ever get the medical community to hear our requests for an > > updated version of an old problem.........? > > > > Rita Weeks 55/10 > >