UPDRS

My UPDRS score, 37. In my 8th year post DX.

Two years earlier it was 27.

[MBAnderson]

you're doing something right. good for you.

[park_bear]

Here's a free version with automated scorekeeping:

neurotoolkit.com/updrs/

I did a quick run through and scored 25. Six years since diagnosis.

[Grumpy77 in reply to park_bear]

Since UPDRS scoring is subjective (dependent on your own feelings rather on a machine calibrated system), how unreliable thus this make UPDRS?

[park_bear in reply to Grumpy77]

Of course a person can be in denial otherwise biased. However, most of the questions refer to objective facts. Personally, in most cases the answer that applied to me seemed clear.

[Healingnaturally in reply to park_bear]

Hi could you please clarify for me should my answer for each symptom be when I am on or off my medication?

[park_bear in reply to Healingnaturally]

Good question without a good answer. Some of the UPDRS questions imply that the answer should be the average of both, which would be my suggestion. Part three, the motor examination, assesses the person's condition at the current time and whatever medication state that may be. Some studies that use UPDRS scores explicitly state whether the measurement is in the on state or off state.

[ForViolet in reply to park_bear]

Thank you for the link.

[WinnieThePoo]

Really pleased you're doing well. But I think that answers your question about progression and B1.

[johntPM]

With UPDRS low scores are good. Most of the questions have 5 possible answers giving a score of 0 to 4. Typically 0 means that a symptom is absent (good) and 4 means that it is severe (bad).

[WinnieThePoo in reply to johntPM]

So a score which is 37 when it was 27 2 years ago represents progress of the disease by 10 UPDRS points over 2 years, or 5 points each year

[Grumpy77]

Since UPDRS is a self assessment scoring system, rather than a calibrated machine controlled measurement, how can subjectivity be minimized? Because the more subjective the measurements are the more unreliable the scores are

[Hidden in reply to Grumpy77]

Yes, and I am not surprised by the score. With the disease it could have been much higher.

I am. I am doing good.

[WinnieThePoo in reply to Hidden]

Yes. But significantly less good after 2 years taking B1, which represents the progress of the disease. So your overall score is not bad for 8 years post diagnosis, but B1 has not "completely stopped progression". In fact it hasn't even slowed progression, 5 updrs points a year is a bit higher than average.

[Gioc in reply to WinnieThePoo]

I don't understand Winnie, at first you make very precise assessments of Roy's case status based on his UPDRS score, then in a post later you say that the test is "bit clunky".

Decide how to evaluate what Roy says and apply it in the same way to everything.

To say if you think Roy is trustworthy on the test the same is true for the rest.

IMO you should take it easy when evaluating people's cases based on a post without even seeing them in person, it's rude and you could say "clunky".

[Hidden in reply to Gioc]

This seems like a very precious reaction. My guess is you are put out by the suggestion that perhaps B1 does not, after all, stop progression.

Theres nothing inconsistent in noting that a person with a 10 point climb appears to have progressed whilst also describing the scale as 'a bit clunky'.

[Gioc in reply to Hidden]

Cris always at work even at night? but you never sleep? problems of conscience?

You definitely do not know the b1 and neither the levodopa nor the UPDRS test that you have never done true?

But let's talk about money that is your field, how much is a human guinea pig worth for a research company that carries out a trial ?

[Hidden in reply to Gioc]

I see that you have reduced the number of posts that it takes you to transition from "on-topic" to "complete gibberish". I like it. More efficient. Might be the B1.

[Gioc in reply to Hidden]

Your only post fixed there for months as an advertisement speaks for you.

Write another couple of posts, about what you want, instead of a thousand replicas, you will be more believable to me.

[Hidden in reply to Gioc]

The last thing I want is to be believable to you.

[Gioc in reply to Hidden]

Then make sure you do not answer my posts that are not directed to you. Thanks

[Hidden in reply to Gioc]

If you steer clear of mine, I'll do the same for you.

[Gioc in reply to Hidden]

You've said this before more than once, but you've never done this before. Do you see that you are not credible even in the small things?

[Hidden in reply to Hidden]

A bit clunky ( test) and answers can be subjective. Ten point variance is little.

Mostly reversed can describe as reversed/stopped based on gross symptoms relief.

[WinnieThePoo in reply to Gioc]

Gio

I appreciate that whilst you speak (or at least write) excellent English, it's not your first language. As one who has to try to communicate daily in French, which is not my first language, I understand and I empathise. However, in the circumstances, perhaps it would be wise to take a less confrontational approach. I was quite offended by your comments.

The "precise" assessment of Roys case was to note that by Roy's assessment of his own PD, using the UPDRS score - over 2 years, during which he was taking B1 his PD has progressed by 10 points, averaging 5 points per year. That's all

However, to expand on that, "normal" ( in this snowflake disease where everyone is different) is to progress 3-4 UPDRS points each year. So "normal" for 8 years post diagnosis would be a UPDRS score of 24-32. And "normal" progress over 2 years would be 6-8 points. So, by his own measure, Roys PD has progressed - and by quite a lot compared with "normal".

That is important , objective information that shows that B1 does not "completely stop progression". Indeed, it is strongly suggestive that it doesn't even slow it

So that is how I have decided to evaluate what Roy says

The next line -"To say if you think Roy is trustworthy on the test the same is true for the rest. " emphasises your limitations with English. I'm not sure what you meant. But to be clear, I do trust what Roy says. By his own , clear, consistent measure, his Parkinsons has progressed by more than "normal" and B1 does not halt progression

I fear you are the one being rude. Let me explain "clunky"

Others suggested that because the UPDRS score is self assessed it is subjective. Not objective. And therefore comparison of results should be with caution. That is potentially true comparing the results of different individuals. It is less likely to be true comparing the results of the same individual 2 years apart. So whilst Roys score of 37 might not be directly comparable with my score of 6, the increase in his score from 27 to 37 doesn't suffer from the same potential limitation.

In fact, I think that even when comparing between individuals, the subjectivity is less than you might think, because the measures are "clunky". By "clunky" I mean quite big definite stages which don't reflect subtle changes, and therefore reduce the scope for subjectivity. For example, over the last 2 years I have noticed increasing difficulty shampooing my hair with coordinated hand movements. My left hand can't work properly. But the UPDRS definition I tick throughout that period remains "I have some difficulty, but I can manage". It's been getting worse, but the next stage is "I can manage some tasks but need help with others". I don't need help - I'm just MUCH more awkward. So the scoring is quite clunky - which reduces the subjectivity - and increases comparability

I wasn't being rude about anything. I think that due to English being your 2nd language, and maybe as ChrisWF has suggested, due to your defensiveness about any objective discussion of B1 , you sailed close to the wind.

[Gioc in reply to WinnieThePoo]

Winnie I always write and say what I think and I have few friends for that, but the few I have are true friends. I said "rude" wanting to be a little argumentative with you and no further. Therefore I apologize for being rude and for offending you. The discussion remains open if you will and my question is: why are b1 asked to demonstrate to halt the decline of PD when we know that today we do not have the tools to prove it not only for b1 but for any other substance? IMO it takes 8/10 years of use to prove irrefutably a slowdown in progression and no one will ever do such a long search. It would take a precise progression marker for all PD research. I want to simply live my remaining years as well as you, whatever solution is welcome, and spam trolls without PD stay away from me.

[WinnieThePoo in reply to Gioc]

Thank you for the apology Gio. Roy, and others, have claimed B1 completely stops progression. His own evidence suggests that is not the case.

That's the context.

[WinnieThePoo in reply to Grumpy77]

It's not that subjective. It's a bit clunky. Also, it measures the state of your PD based on your current medications. It is as much a measure of the success of your medication and other treatment strategies as it is of the underlying progress of the disease.

[jeeves19 in reply to WinnieThePoo]

Actually I think that’s very important. I wasn’t aware whether it was it was related to being off meds or on. The difference in score for me would be immense!

[Isthistheone]

Exactomundo Grumpy. Don't know or remember who came up with that word. Thinking it was not your average bear, but still can't remember! Anyway just ran the numbers and scored 31. Diagnosed Aug 2010 at age 59 years young. Had symptoms 10 years prior.

Presently taking about 2000 mg levodopa daily. 200-300 mg, 8 X per day. Also take one Gocovri. Capsule 137mg at bedtime. Normal dose is 2 capsules but that worsened my orthostatic hypotension. Also take one tablet lovastatin 40 mg.

Take care, stay safe and keep moving. God bless.

[Nitro53]

👍🏻

[Cagey84]

Don’t forget that the motor part of UPDRS was designed to be scored by a MD or trained health professional and in the ones I’ve had, the questionnaires were too.

[pdpatient in reply to Cagey84]

Absolutely correct. Self assessment is dangerous.

[sharoncrayn]

#1 I hesitate to intervene here, but part 3 is always done by a doctor when the PwP is "off medication", not by the PwP, nor when the PwP is on their meds. HUGE differences will result if not done correctly.

#2 Average progression is 2.5 points per year for part 3 over 5 years or a total of 12-13 points...8 years since Dx should result in a total of around a 16 - 24 point increase.

#3 An increase of only 10 points on part 3 over 8 years is the positive tail end of a normal distribution...highly unlikely but possible.

Quite a set of opinions. Interesting.

Sharon

[17Hillview]

Does it make sense to do both ON (best case) and OFF (worst case) scores?

It may be difficult to decide on an in-between score, but we pretty much know the best and worst of each of our symptoms.

[Gioc in reply to 17Hillview]

This research has changed things about the real state of off.

“Data were collected at baseline, at 1-year and 2-years follow-up. First-ever levodopa intake induced a significant improvement in motor symptoms (natural OFF versus ON state UPDRS-III 41.9 ± 15.9 versus 26.8 ± 15.1, respectively; P < 0.001). At 1-year follow-up, OFF state UPDRS-III score after overnight withdrawal of levodopa was considerably lower than natural OFF (26.5 ± 14.9; P < 0 .001). This effect was not modified by disease duration. At the 2-year follow-up, motor signs after overnight OFF (30.2 ± 14.2) were still 30% milder than natural OFF (P = 0.001). The ON state UPDRS-III at the first-ever levodopa challenge was similar to the overnight OFF score at 1-year follow-up and the two conditions were correlated (r = 0.72, P < 0.001). Compared to the natural progression of motor disability, levodopa treatment resulted in a 31% lower annual decline in UPDRS-III scores in the OFF state (3.33 versus 2.30 points/year) with a lower model’s variance explained by disease duration.”

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