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Greg L.... Mighty nice to see ya back on the List, m'dear... Barb Mallut [log in to unmask] -----Original Message----- From: Greg Leeman <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Wednesday, March 08, 2000 6:54 AM Subject: Re: Rating scales. Was: Long term prognosis >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 >> >>