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Unified Parkinson's Disease Rating Scale (UPDRS)?

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Laura, 21/15? WOW! all I can say is "I wish"............ And we're the same age........ go figure..... :?  but, that's the way the cookie crumbles...........

Pardon me, but I think that I'll take my walker, and shuffle off to find some breakfast.....................

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Oh Flybaby...I can only wish that if I battle this for as many years as you have I can walk or shuffle to get my breakfast...not minimizing your stage but I read you as being very resilient....

 

We may be the same age but you have had the battle much much longer...and your still going strong...

 

21/15 ? What do you question...if anything!!

 

Cheers

D

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16 was my overall score. I actually feel much better than I did when I was diagnosed. Less tremors, arm swing back, no shuffling my feet, no gait isses, no studder, not waking up chocking on saliva. Unless you stare at my hand, you probably would have no idea I have PD.

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SWVA....you are a mirrored image of myself as far as symptoms go...no one knows I have PD unless they watch my right hand and right leg carefully..

 

My only med is Azilect ....

 

Cheers

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UPDRS total score: 31 (out of 199 possible points)

Mentation, Behaviour & Mood: 4 (out of 16 possible points)
ADL: 10 (out of 52 possible points)
Motor examination: 13 (out of 108 possible points)
Complications: 4 (out of 23 possible points)

 

Looks like after almost a year since I noticed my first symptoms I am doing ok.

 

Still no meds, just the study drug Isradipine.

 

Looking to start some med in end of October once my 3 month no medication period is over for the study.

 

Thanks for the links

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Adams234, hi there!

 

Are you going to start meds at the end of October because you feel you need to be on them or because you were told you should be on them?

 

Cheers

Discovery

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I feel I need something. My feet are in a constant state of dystonia, It makes them very painful, also my right side shoulder arm and leg muscles get very tight and stiff. Hoping for some relief. I talked to my MDS when I started the study and she has some meds she would like to try with the study drug.

 

We shall see what happens

 

Thanks for asking Discovery

 

Blessings

Adam

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Hi everyone ! Missed you all!! Not writing much, but reading the posts in the forum regularly...

 

Happy to see some of us are actually doing better than worse...This is possible with optimal treatment...

 

I didn't attempt to re-calculate my motor scores. Basically, I suspect that chances are that my initial assessment might be incorrect... It's almost impossible to self-assess our motor symptoms and score them correctly. Even if we were neurologists ourselves.. For example, what we perceive as "severe"  rigidity, tremor or dystonia  may be rated as "mild" from our MDS.  

 

We can always ask our neurologists about our scores. And report them here. I will try to remember that on my next visit to my neuro.

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We missed you too!

 

That's what I think...great test for us to get a somewhat idea but I wouldn't bet the bank on the scores....it's all about how our symptoms are perceived by who's doing the scoring....best done by your MDS..

 

I will definatly take mine in with me in May....I'll report to see how far off I am...

 

Discovery

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Adams234-Do you know which meds your MDS is thinking about for your dystonia?  I just started c/l because of my dystonia and already it is so much better.

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Hi Christie, good to see you posting.... <smile>......... Yes, you are probably correct, and I'd say that we more than likely under rate our selves. It is good, in that it does get us talking. Talking about how we are each doing, and feeling. It also gives us a chance to look at ourselves, and see the whole picture. To look beyond how many pills we're taking, or how we might feel this moment, but to look at ourselves holistically..... not as a group of individual symptoms, but as a whole person........... and where we are within our journey through this disease called Parkinson's

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Peace, She mentioned starting off with Azilect and then adding as need. I do not want to use agonist (I have just seen to many horror stories) So if Sinement is the next step I am ok with that. According to my MDS, I am very early stages of PD, my symptoms are just enough to get diagnosed. So she wants to be conservative with the meds. I am fine with this too.

 

We shall see.

 

Thanks for asking

 

Michael, that was very well put.

 

Blessings

Adam

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Hi Christie!

 

Like Michael I figure it is just a number.  I was telling my wife I feel great, and just amazing that I really don't have symptoms at all.  She just rolls her eyes with "Really?"   We are a bit if yin/yang.  I'm the pure Optomist and she is the Pessimist, so we make a perfect couple.

 

Odd part... one year ago I had pretty much freaked out with "What? I have what? No that isn't possible".   Yep, it's been one year since I first posted. Doesn't seem possible, but what a wild year it has been.  I have to admit I am feeling much better and much more active. The meds have really made a difference, as the exercise.  It is also odd to realize I was approaching 300# last year. OK, 295, but once that scale went above 280-285 I just didn't go near it. Weigh at the doc always thought it was 20# worth of shoes, slacks, dress shirt.    Yesterday, 268#.   Gradual 2# a month, but a good trend.  Flexibility and movement much better.  In a store I still prefer to use a shopping cart for stability, but can get around fine. 

 

When you come down to it, it is just a matter of getting out and enjoying life!

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All the best to you Adam.  I know how frustrating dealing with dystonia can be.  I was a little reluctant to start with C/L, the gold standard, since my other symptoms are mild but now I am so glad I just skipped over the other options.  After only three days I was able to walk so much further without foot dystonia and my joint stiffness is better as a result also.  I'm sure you and your MDS will do what works for you and I look forward to an update and hearing that you also find relief.

 

TexasTom-So glad you are feeling better now than a year ago.  Made me start my day with a smile.

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Adams234,

 

Good morning,.

 

Not sure if you are referring to Azilect as being a Agonist. If so its not. It's known as a MOA-B.

 

I have been taking Azilect as Monotherapy and I have had no issues at all with the med..In fact I'm so glad to be taking it.

 

Best too you..

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Discovery, I was not refering to Azilect as an Agonist. I ment that if my DR is going to add more drugs once I start Azilect I dont want any of the agonist i.e. meripex, neuropatch, ect. Just seen to many horror stories with those.

 

Thanks and glad to hear you have had good luck with Azilect.

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Sorry, I miss read your post:(

 

I agree with you on the Agonist..personally I will not go on them...however many have and do fine...go figure???

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Discovery,

Re-read my post and I can see how that assumption would happen.

 

No need to applogize it was my error in my grammer. So I applogize to anyone who made the same conclusion.

 

Blessings and thanks for the good converstions. One thing I don't like about fourms is it hard to get the tone off of some of the post.

 

All is well.

 

Love everyone on here

 

Blessings

Adam

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Azilect alone didn't seem to do much for me. Adding Neupro did the trick--at my last MDS appt. a few weeks ago, I was basically symptom free (motor score=1 or 2). So far, no significant side effects. Occasional nausea and afternoon sleepiness (both manageable, and less frequent the more active I am), some itching under the patch after about 12 hours or so.

 

I'm sure this is just a 'honeymoon' period, but being able to forget I have PD for most of the day is worth it. Hopefully, exercise will keep me at this level for some time.

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UPDRS total score: 23 (out of 199 possible points)

Mentation, Behaviour & Mood: 3 (out of 16 possible points)
ADL: 6 (out of 52 possible points)
Motor examination: 11 (out of 108 possible points)
Complications: 3 (out of 23 possible points)

 

I will take it!

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Would you kind folks care to resurrect this thread and retest yourselves. I’d like to see how you are scoring yourselves. Yes it’s not as accurate as what an MDS would do but it does show your own perceptions of progress. 

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18 while on meds. 3 worse from my 15 score from 3 years ago. Not bad I guess. My dosage has more than doubled since then. I can still physically do everything that I could before PD. I just get tired easier and have a tremor. Without C/L, my score would probably be more than doubled, but I don't want to even try to see what no meds feels like.

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This is highly subjective. 

UPDRS total score: 32 (out of 199 possible points)

Mentation, Behaviour & Mood: 3 (out of 16 possible points)
ADL: 9 (out of 52 possible points)
Motor examination: 14 (out of 108 possible points)
Complications: 6 (out of 23 possible points)

Dave

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