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#1 | |||
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Senior Member
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Debi
I've been in enough clinical trials to know that both measurements are quite ambiguous, especially the Hoehn & Yahr. OK - we have a teachable moment here! Hoehn & Yahr is a simple scale that rates theh stages of one's progression of Parkinson's. For the trial I was in, one had to be 3.5 (but that's fudging s bit). The scale is 1 to 5 (5 being the worst). In laymen terminology, 0 is the absence of any symptoms; 1 is tremor or only one side affected (a foot that drags, a tremor in one hand, etc.) At stage 2, both sides are affected, and 3 just adds balance problems. Many of us fall under 3 on this scale. If you are a 4 - you need a lot of assistance, and probably have to be in a long-term care or assisted living setting. Then the infamous 5 rates one as confined too a wheelchair or bedfast. I have been between 3 and 4 for a long time. The H&Y is just a rating instrument using observable symptoms only. Here are the details: http://www.allaboutparkinsons.com/ho...ahr-scale.html Th UPDRS (United Parkinson's Disease Rating Scale) is MUCH longer and more detailed - it also includes questions about your quality of life, activities of daily living, Mood etc. http://www.neuropsicol.org/Protocol/Updrs.pdf Although not nearly as unreliable as the H&Y, the UPDRS has been under fire for needing change due to many areas being unreliable because of the subjective nature of the questions. And although the UPDRS has some non-motor symptom questions, it doesn't dig deep enough into the non-motor stuff. Recently, I attended the Office of Biotechnology Activities and NIH Sham neurosurgery conference, and this was a bone of contention with me. In my opinion, Parkinson's is as much a mood disorder as it is a movement disorder. I made this very statement at this conference adding "If we don't start assessing both mental/mood status parallel wih motor skills, we will never find a cure for Parkinson's." I also mentioned that although there had been some changes to the UPDRS , there was still too much leverage with interrater bias. No one argued with me. Here is an abstract on a validation study of the mental/mod part of the UPDRS: http://www3.interscience.wiley.com/j...07370/abstract Well, I didn't mean to get carried away on this, and could discuss it for at least another hour, but unless the readers want to know more, I'll quit here... (for now). ![]() |
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"Thanks for this!" says: | Bob Dawson (07-22-2010), lindylanka (07-23-2010) |
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#2 | |||
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Member
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Bob, I'm sure now that I like you!
I looked up what those initials stand for and by scoring myself, I would be stage 3 for the first part and a lot of 1's and 2's for the second part. My main problem is dyskinesia which renders everything null and void. DBS here I come. |
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"Thanks for this!" says: | Bob Dawson (07-22-2010) |
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#3 | |||
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Senior Member
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I don't know mine and I don't care. I once asked my doc about them, and she said they were really only relevant in research; they aren't a useful tool for patients. I agree.
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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