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> 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 >