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PatriotM

Unified Parkinson's Disease Rating Scale (UPDRS)?

47 posts in this topic

Does anyone know if there is a "key" to describe what the total UPDRS score indicates?  I looked at an online UPDRS calculator at http://tools.farmacologiaclinica.info/index.php?sid=11767 and my result was 42.  It says that 0 is no disability and 199 is the worst disability, but doesn't elaborate further.

 

Before someone points it out, yes - I know that only a qualified neurologist can properly evaluate a patient and assign them a proper number.

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I ranked myself and found I was a 41, which considering my answers and the fact I can function, I'm going to guess anything below 75 is barely disabled if at all.

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That was kind of fun !! LOL! Mine was 54! My motor score was 38! Ha! Anyone else care to compete?

 

I strongly disagree with metfan! Any MOTOR updrs score greater than 35 is bad news! So, I can only guess we probably mis-calculated our scores ? ? (or at least I hope so...LOL)

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2679966/

 

"PD subjects were divided into three groups: 1) mild PD (motor UPDRS score 20 or below), 2) moderate PD (motor UPDRS score from 21 to 35), and 3) severe PD (motor UPDRS score greater than 35)".

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Christie and Metfan, were your scores while on PD meds?  Would the score change if off PD meds?

 

FWIW, my motor score was 24.

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I fall in the mild zone with a total score of 37 and a motor score of 20.  Where's the test for my Neuropathy?

 

Dave

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OK I went to the site completed everything as best I copuld and got a 69 (no snickering from the peanut gallery please). Now I'm not sure what this means. I'm still pretty functional I think. I really don't have a known basis for comparison.

 

Guess I will have to discuss this with my neurologist next week when I go see him.

Edited by Donald Ennis
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(snicker, snicker and twisting the ends of their curly-cue mustaches)

 

I don't know what it really means either Don, but it's kind of interesting.  Obviously, it's also somewhat subjective.

Edited by PatriotM

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OK I went to the site completed everything as best I copuld and got a 69 (no snickering from the peanut gallery please).

 

hohoho....(couldn 't help it Don, sorry...LOL)...so, Donald is ahead with 69 points. Christie right behind him with 54.

 

 

Game still on guys!! Let's see what you've got !!! LOL!!

 

PS: Scores while on PD meds ONLY!! And no cheating please...Awards will be given for the first three places, including a high tech DBS remote control!!!

Edited by christie

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PS: Scores while on PD meds ONLY!! And no cheating please...Awards will be given for the first three places, including a high tech DBS remote control!!!

 

Yea and who gets to hold the controller? I don't think I want a remote controlled DBS if my wife can up the voltage at will.

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Since I have the lowest score so far (wish my golf score was like this), I'll hold the remote.  So be nice.

Edited by Daven
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My MDS rated my motor score at 37 during my last visit. He said that is moderate to advanced Parkinson's. He was pretty impressed that I was still working.

 

Kind of depressing since I'm only 28.

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I didn't know there was going to be a prize.  It seems that I made a math error on my test (cough, cough) and my correct score is 69 1/2.

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That was kind of fun !! LOL! Mine was 54! My motor score was 38! Ha! Anyone else care to compete?

 

I strongly disagree with metfan! Any MOTOR updrs score greater than 35 is bad news! So, I can only guess we probably mis-calculated our scores ? ? (or at least I hope so...LOL)

 

.[/i]

So sorry my opinion was only based on my own exp and my ability to function regardless of my obstacles. So like all things PD we all handle it differently I must confess I was approaching 'off' when I took the test. Just retook it now and got a 36 so perhaps a 43 would difficult if that was the best I get when medicated as off periods be subsiquently worse... anyway this was fun to put a score on my PD, so much so I did it twice. How do you get a motor score?

 

And in case I haven't said it enough, I do not pretend to be an expert here, I am very much a begginner here, and anything I say is based on opinion and expierence. I will repeat what I have read and been told at times but normally state my sorce when I do so. Just using this forum as an avenue to get other peoples insight and share my own opinion. Remember opinions are like butt holes we all have them and people rarely care to see someone elses without requesting to first (yes that sounds like an odd request). This said my butt hole on the matter of score is that regardless of what any expert thinks you are only as disabled as you think you are, no matter the score. I went to high school with a young man who was wheel chair bound his entire life, had to use hand padles to drive a car, yes experts deemed him disabled and he used handicap parking and other assistance, but there was nothing I could do that he could not (besides walk) and he could kick my @$$ in a fight if it came down to it. He never let anyone call him disabled or handicapped, and refused help for anything he could do on his own. So with him as an example growing up yeah I believe disability is a state of mind, and not so easily defined by a panel of doctors.

 

That's just my opinion, I could be wrong...

 

Richard

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OK I went to the site completed everything as best I copuld and got a 69 (no snickering from the peanut gallery please). Now I'm not sure what this means. I'm still pretty functional I think. I really don't have a known basis for comparison.

 

Guess I will have to discuss this with my neurologist next week when I go see him.

I promise I did not laugh until you said no snickering and thought about why your score would be funny, not that I've never thought that way but just wasn't at the moment. Monty Python said it best, but I'll leave it to others to look up what that means if they wish to follow me into the gutter... lol

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I am I huge Monty Python fan,

Nudge nudge wink wink

Know what I mean?

Say no more say no more

 

Lol

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I know this is an old post, but I saw a recent post talking about the rating system. I tried out the calculator and got a 16 which seems to be a really good score. I answered the questions like I was "on" with my Sinemet. I think I will ask my Dr. what he would score me at my next appointment.

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Definitely interesting....... On meds, with DBS on, I was at 70 overall with a motor score of 37.......... but based on my experience yesterday morning at a PD event at my Dr.'s request, where I was on meds, but with my DBS turned off most of the morning........... I would score as, overall a 112 with a motor score of 68

 

So my question to Christie, Patriot, Daven, Afroney, and MetFan......... would be, what do your scores look like today????? almost 2 years later?

Edited by FlyBaby

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UPDRS total score: 35 (out of 199 possible points)

Mentation, Behaviour & Mood: 6 (out of 16 possible points)
ADL: 7 (out of 52 possible points)
Motor examination: 17 (out of 108 possible points)
Complications: 5 (out of 23 possible points)

I switched to Rytary a couple of weeks ago and have eliminated a lot of issues I was dealing with . So, two year later it appears I am in better shape.

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Thanks for resurrecting this thread. In the two years since this thread originated, my UPDRS score has increased 6 points to 48 but my motor score has improved 1 point to 23.

 

FYI, there is a newer version of the UPDRS called the MDS-UPDRS. It's a lot more user friendly and easier to understand. You can find It here: http://www.movementdisorders.org/MDS-Files1/Resources/PDFs/MDS-UPDRS.pdf

 

Using the MS-DRS, my total score is also 48, but my motor score is 20 (instead of 23 with the original version. I'm a little disappointed that my total score has increased by 6 points in 2 years, but am happy that the motor score has slightly improved (likely due to the exercise and possibly the Protandim.

Edited by PatriotM

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I need to start exercising more....

 

UPDRS total score: 75 (out of 199 possible points)

Mentation, Behaviour & Mood: 6 (out of 16 possible points)
ADL: 18 (out of 52 possible points)
Motor examination: 42 (out of 108 possible points)
Complications: 9 (out of 23 possible points)

 

 

On some of the questions I marked "1 to 25% of the time" as there is a difference between on/off.

 

The great news is I am actually doing better than I was when first diagnosed.  Hence my comment about my MDS wasn't if she suspected PD, but was more of a 'what took you so long to be seen?"

 

It is just so odd how I can feel so great (on meds), and when I start slipping suddenly it feels like I've aged 40 years in 40 minutes.   Damn!

 

Christie pointed out it should be rated when "on medication" -- Since I hit on/off during the day that is actually reporting my worst during the day. If anything I should think of adjusting medication as I can feel the difference... but really don't want to increase to always be on.  I was up early, so took morning dose at 4:00AM.   Next dose due at 10:00AM, but trying to stretch it out till then. 

Edited by TexasTom

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I scored 21.... I think it's not too bad right?

 

It was fun to do but I won't bet the bank on it...

 

Great day to you all..

D

Edited by Discovery

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