Parkinson's Disease Tulip

Reply
 
Thread Tools Display Modes
Old 07-22-2010, 08:23 PM #1
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Participants in Clinical Trials might know

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).
pegleg is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bob Dawson (07-22-2010), lindylanka (07-23-2010)
Old 07-22-2010, 09:09 AM #2
bluedahlia's Avatar
bluedahlia bluedahlia is offline
Member
 
Join Date: Dec 2006
Posts: 419
15 yr Member
bluedahlia bluedahlia is offline
Member
bluedahlia's Avatar
 
Join Date: Dec 2006
Posts: 419
15 yr Member
Default

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.
bluedahlia is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Bob Dawson (07-22-2010)
Old 07-22-2010, 11:15 AM #3
indigogo's Avatar
indigogo indigogo is offline
Senior Member
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
indigogo indigogo is offline
Senior Member
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
Default

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.
__________________
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
indigogo is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
How random is this MS thing? legzzalot The Stumble Inn 7 04-04-2010 12:38 PM
Random 3/15/10 thoughts freeinhou The Stumble Inn 3 03-15-2010 08:09 PM
25 Random Things........ erinhermes Myasthenia Gravis 12 02-12-2009 04:41 PM
Random Thought suzyqz_2007 Social Chat 2 02-05-2008 08:09 PM
A few random supp ? daniella Vitamins, Nutrients, Herbs and Supplements 10 11-25-2007 06:01 PM


All times are GMT -5. The time now is 02:08 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.