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Good Morning! At one time I paid attention to the rating scales. As my progression revealed more and more susceptibility to stress and it's negative impact on my daily life, I became more and more convinced that it is far too subjective from patient to patient for those in the medical community to accurately rate patients. Further, in my mind (and it is a diseased mind) their is no relevance to be drawn. It simply doesn't matter. Rita, you have struck a nerve on my least favorite subject. Cyclical days for PWP's and their care givers. Mood swings to the nth degree. Going from confident and happy to confused, skittish and depressed all in the blink of eye. This, at least for me is the single most important aspect of what PWP's face. Yet it is given little press or mention when the symptoms of PD come rolling out. It is time for PWPs and other chronically ill people to demand that we need to start to address this problem more aggressively. It is good to be back. I hope all is well with everyone. Greg Leeman -----Original Message----- From: [log in to unmask] <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Wednesday, March 08, 2000 9:23 AM Subject: Re: Rating scales. Was: Long term prognosis >Hi Phil, >As a PWP, I strongly agree with you re: the UPDRS not covering some very >important areas of progression. In fact, on numerous occasions (probably >every office visit!!!) I have told my neuro/nurse "you don't ask the right >questions to understand the impact or changes of the disease for me". I >truly wish that a broader scale could be developed. >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 > >