Can Anyone Give Their Current UPDRS Part ... - Cure Parkinson's

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Can Anyone Give Their Current UPDRS Part 2 Score

chartist profile image
chartist

I was just wondering if anyone knows and can share their UPDRS Part 2 Score? Thank you!

Art

23 Replies

My UPDRS part 2 is 6 currently. On my last hospital visit (early April) it was 9.

(Remember, those scores are on medication - 1mg per day Pramipexole ER in my case)

Thank you, Ricardo!

Art

What does these scores imply? I mean is dropping from 9 in April to currently 6 a positive progression (PD progression stable or slowing down), a normal progression or a negative progression (PD deteriorating faster than normal)?

In theory it shows my condition has improved. However the scoring is quite klunky so I don't read too much into it. In my case it represents scoring 0 instead of 1 on 3 questions

Hi there. What is UPDRS?

chartist profile image
chartist in reply to M-o-ggy

UPDRS = Unified Parkinson's Disease Rating Scale and is used by your neurologist or Movement Disorder Specialist (MDS) to test you to see where you are in the disease process in terms of total symptoms and their severity. There are four parts to this testing system and I am interested to see where the forum members are currently testing for the second part of the test that involves how you do at day to day tasks. Here is a more complete description of all four parts of the test :

movementdisorders.org/MDS/M...

Art

We’ve never done it...maybe we should 🙂

22 (made up of: 3, 3, 3, 1, 1, 1, 3, 1, 2, 1, 2, 1, 0)I'm 16 years post diagnosis, on 760 mg levodopa equivalent daily dose.

There's all sorts of reasons why UPDRS, part 2 is not a good test, but over long periods of time I can't think of anything better.

But, for short periods of time, like how you vary during the day, I think a better test is the side-to-side tap test. My lap top version can be found on:

parkinsonsmeasurement.org/t...

No neuro I have seen in my country or in UK has bothered with this test. I cant see any use for it, what difference would it make to treatment?

chartist profile image
chartist in reply to Hikoi

I don't think any difference to treatment, more for having some basis of where you currently are in terms of symptoms for comparison in the future and trials use it as a rough basis for comparison of the start of the trial compared to the end of the trial.

Art

7 or 8 for me. On a good day 6, bad day 8.

Neither my neurologist nor either of the two MDS that I have seen has given me test. They just ask me to walk and look at whether my arm swings or not. Their lack of interest is pretty frustrating....

Hikoi profile image
Hikoi in reply to carpark

What meaning would it have? Its just so you can say you did it, then what? It doesnt change anything.

chartist profile image
chartist in reply to Hikoi

In studies it would be useful for comparison purposes of pre trial to post trial. Here is an example from the 12 week FMT study :

ncbi.nlm.nih.gov/core/lw/2....

Look at the column group for UPDRSll score and you can see how this measure changed from before FMT exposure to the end of 6 weeks and the end of 12 weeks. These are significant changes and is one means of determining the efficacy of the treatment and in conjunction with the other columns for different testing methods or utilities helps to add confirmation to the outcome conclusions.

Art

Hikoi profile image
Hikoi in reply to chartist

Yes it probably has utility for studies such as this but I think that subjective tests are VERY inaccurate and the placebo effect is huge. Add the long life of levadopa in the body - weeks not hours and I think these tests have little real use. I would rather wear a tracking device when they have developed a good one.

chartist profile image
chartist in reply to Hikoi

Yes there is definitely room for improvement in these testing measures in PwP, but the UPDRS testing is considered a higher standard, comprehensive and is one of the most popular for reference testing. Yes, the placebo effect is very real and it would be great to figure out how to activate it on demand! It's sort of like Sinemet is the gold standard treatment, but there is still plenty of room for improvement, but it is still the gold standard.

If levodopa stays in the body for weeks, its effects don't, as most PwP have to take it every so many hours, not every so many weeks.

Art

GioCas profile image
GioCas in reply to carpark

the various tests make the difference between the professional and the hasty one, if the aim is to help the sick person, attention to the latter makes the difference.

I’ve just started a 10 week PD warrior study and for the first time ever I got a UPDRS number of 3. That is the starting point and they do it again after 10 weeks.Complete rubbish I reckon unless you take the meds and are tested at the same time.

To me the only measure will be if I can move my feet and not freeze and fall over at tennis, which now happens every time I play.

Art,

my current post covid and self-determined score ranges from 5 to 7, but taking the test alone carries this risk. I've always wondered what would be the score of a person without PD, in my opinion he does some points. How much is your Art?

LOL :-)

chartist profile image
chartist in reply to GioCas

You got me there, Gio! 😜

Art

Seems quite subjective.

For anyone who has the time and inclination, could you possibly fill out this free online UPDRS test for UPDRSll and then report your score in this thread? It only requires filling out 13 questions pertaining to "daily activities" by choosing a number from "0" to "4" to describe each question that affects you. The answers are pre selected to zero and if you don't have the symptom being described just leave it at zero, otherwise select the number that you feel best applies to you. Here is a link to the free test :

neurotoolkit.com/updrs/

You have to scroll down a little once you reach the page to reach the part 2 questions (13). Once you answer the 13 questions, total your numbers up and post them to this thread.

Thank You!

Art

RoyProp profile image
RoyProp in reply to chartist

mdapp.co/unified-parkinson-...