UPDRS whats your score? Find out here. - Cure Parkinson's

Cure Parkinson's

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UPDRS whats your score? Find out here.

bassofspades profile image
45 Replies

farmacologiaclinica.info/sc...

click on START SCORING

Take the UNIFIED PARKINSON'S DISEASE RATING SCALE test online or with your mobile phone or tablet.

My score is 34. What's yours?

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bassofspades profile image
bassofspades
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45 Replies
park_bear profile image
park_bear

That page came up blank using both Chrome and Firefox. I do not use Internet Exploder.

bassofspades profile image
bassofspades in reply topark_bear

I use chrome on my phone

bassofspades profile image
bassofspades in reply topark_bear

I tried it on a PC and it did come up blank. try this link

farmacologiaclinica.info/sc...

click on START SCORING

Xenos profile image
Xenos in reply tobassofspades

This one is OK :-)

park_bear profile image
park_bear in reply tobassofspades

OK, that worked. Indeed one has to be careful to avoid the clickbait.

54 here

jeeves19 profile image
jeeves19

21 but then I'm on meds. Unsure what it's like without them? Nice post and who's your favourite bass player?!

bassofspades profile image
bassofspades in reply tojeeves19

Favorite bass players are jaco pastorius, billy sheehan, geddy lee, geezer butler and myself!

jeeves19 profile image
jeeves19

Excellent. Saw Sabbath in 78? In a small theatre with Van Halen as the support on their first UK tour. I miss those days so much😕. Great choices btw: I completely agree with Geddy (saw Rush 10 times and can boast the Kings and Hemispheres tours), Jaco astounding but my third...............Macca.

bassofspades profile image
bassofspades in reply tojeeves19

openculture.com/2016/12/the...

YES! and Chris Squire

Juliegrace profile image
Juliegrace

50, on meds, but including some "off" symptoms.

ddmagee1 profile image
ddmagee1

46

Hal1 profile image
Hal1

8 but I'm on meds

alaynedellow profile image
alaynedellow

I scored 13. More questions here than i ever been asked by any of my 4 neurosurgeons!

alaynedellow profile image
alaynedellow in reply toalaynedellow

Just scored 10 down from 13- been on mannitol since christmas. Small improvement but still better.

Dpeachey profile image
Dpeachey

This is the first time I have done this test. I scored 41. I’ve been diagnosed for 4 years, still haven’t tried any drugs.

My score, 27. In my 6th year post DX.

albachiara2 profile image
albachiara2 in reply to

Roy, nelle risposte bisogna tener conto di come siamo, senza tener conto dell’effetto dei farmaci? Grazie

in reply toalbachiara2

Without the effect of drugs

in reply to

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

bassofspades profile image
bassofspades in reply to

Aww Roy! I thought the thiamine was doing you good!!! You still taking it ?

in reply tobassofspades

I was diasbled. I am not disabled thanks to 4g daily of thiamine hcl.

Carrollee profile image
Carrollee

Hi. Am new here, I am usually over on the pmr/GCA section for myself. I believe my father has Parkinson's and have just written a letter to his doctor outlining his symptoms and asking for him to be assessed. Too much was put down to old age in a man that four years ago was sooo busy mentally and physically. He had an allotment, he walked and biked all over the place. He can now only shuffle with the aid of a rollator but not far and he can't stand unaided, often his right foot sticks to the floor and his leg shakes with the effort of trying to unstick it. He doesn't have a tremor so I hadn't considered it before in my quest for a diagnosis. I have done this test on my fathers behalf (unknown to him) to the best of my ability, he scored 64 but I need to ask if I have understood the "on" "off" questions. Is it to do with symptoms. He has worse days than others but none are good. He can't go out without help. He has a Zimmer frame upstairs and down and struggles to get out of bed/a chair etc etc. Any answer/help would be gratefully received. 🤗 cc

in reply toCarrollee

"on" your med is working. "off" the time between doses when med not working

ddmagee1 profile image
ddmagee1 in reply toCarrollee

I can empathize with you. I had a doctor that put my problems down to old age and complaining, I guess, a GP,who actually did not give me a thorough neurological exam. I, too, was busy mentally and physically. For a number of years I was gradually deteriorating, where I got stiff and couldn’t stand for long, or walk very far, and I had freezing episodes and my right leg dragged. That went on, along with numerous falls, for about 8 years. Finally, my daughter moved us to the city, where there was a regional center, with specialists. It wasn’t long before a movement disorders specialist neurologist diagnosed me with Parkinson’s Disease. I realize it is difficult to diagnose, and so some people have to suffer more than they should, seemingly.

Carrollee profile image
Carrollee in reply toddmagee1

Hi ddmagee. Thank you for your reply. Such a strange and distressing illness to deal wth for the sufferer and those who truly care for and about them. It also seems to be such an individual disease with its varied symptoms and progression. Thank you again for taking the time out to share your story. Take care and all the best. cc 🤗

Hollandaise profile image
Hollandaise

57 here Yeah I am second; do i win a prize now?!

bassofspades profile image
bassofspades in reply toHollandaise

You get a participation trophy!

Hollandaise profile image
Hollandaise

You make my dayy bassofspades!

ramondo4 profile image
ramondo4

46

What is your score?

bassofspades profile image
bassofspades

Low 30s

Juliegrace profile image
Juliegrace

My score has improved dramatically. I scored myself at 50 five months ago. That was November 2017 when I was feeling very weak and fragile and could not predict my on and off times at all. I just took it again and scored 26. I took it twice to be as accurate as I can, but even allowing for some error on the physical items, and adjusting 10 points up to 36, that is an amazing jump from 50.

in reply toJuliegrace

Your score has improved and I find your previous post inspiring.

copy

B1/Thiamine HCL Update - Eight Weeks

Juliegrace 2 months ago

Below is a list where I feel improvement, but please keep in mind that some of these may be due to other factors, particularly my increased exercise.

• Increased energy

• Using my left (bad) side more and with more agility – this may be due to an injury on my right that has forced me to use my left but I’m using it more than I have in years

• Turn more easily in bed

• Less anxiety

• Able to space my c/l doses out a little further

• I think I’m able to concentrate a little better

I forgot to write that I have not aspirated food for several weeks. It was not something that happened all the time, but often enough that it concerned me.

It concerns me that an extra day or two between injections can have such an impact. Others have posted about regression without adherence to a strict protocol. I am still not sure if I feel better with the injections than I did while taking 100mg of Allithiamine every morning.

Juliegrace profile image
Juliegrace in reply to

I think I was overly optimistic. I'm not feeling all that well lately. I see a neurologist for a research study follow-up on Thursday. He will evaluate me both off and on meds. I'm curious to see how he scores me.

bassofspades profile image
bassofspades

60 days on B1 and i went from a 34 to 21!

Astra7 profile image
Astra7 in reply tobassofspades

I got 18 with meds.

The b1 seems to be working for you. Gave me vivid dreams - maybe just because I slept more deeply? Will try it again.

bassofspades profile image
bassofspades in reply toAstra7

Take it early in the morning. ?

Astra7 profile image
Astra7 in reply tobassofspades

I do take it in the morning, but I'll try taking it the moment I wake up. People seem to be getting great results.

Congratulations!!!

Art

Kewlfox profile image
Kewlfox

My score 13. [ 6 years DX and on meds.]

rhyspeace12 profile image
rhyspeace12

66 with meds

Spudrock profile image
Spudrock

Hi. I contacted Dr C 3 weeks ago and had an immediate response (on a Sunday) which really impressed me. I have had PD for 12 yrs. He advised 4g daily of B1HCL. I am building the dose up gradually. 2 weeks so far and up to 2.5g per day. I have more energy and more confidence. For the first time in a year I played golf again. Just did the UPDRS test and scored 29. For comparison I did the Lombard test with my physio and scored 30/30.

KERRINGTON profile image
KERRINGTON

mine's 36

“28” after 18 days of thiamine HCl.(April was “33”).No medication. 21 months since diagnosed. One year ago was “29”

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