Bob, I'm sure now that I like you!

I looked up what those initials stand for and by scoring myself, I would be stage 3 for the first part and a lot of 1's and 2's for the second part. My main problem is dyskinesia which renders everything null and void. DBS here I come.

I don't know mine and I don't care. I once asked my doc about them, and she said they were really only relevant in research; they aren't a useful tool for patients. I agree.

Link to definition of UPDRS Scale:

http://parkinsons.about.com/b/2009/0...ting-scale.htm

Link to description of Hoehn & Yahr test Scores:
http://www.movementdisorders.org/Use.../hoehnyahr.pdf

Link to Scan Biomarkers of PD:
http://www.parkinsonsdiseasecme.com/...s-disease.html


My FDOPA Scan taken at Mt. Zion in New York showed moderatly severe 5 years ago. I would trust having a second FDOPA Scan over the H & Y scale or the UPDRS Scale anyday to measure the progression anyday.

Vicky

AN age old expression applies.....garbage in = garbage out.
Try this link for better patient input.
www.parkinsonscreativecollective.org

Better yet....order the book now. Bob C

Vicky,

you might want to wait before getting a PET scan. it appears that patients at Columbia U. were injected with bad quality radioactive dye [ is that what you call it ] by some of the most prestigious medical scientists. These people have been betraying the public and knowingly continued the injections. This is one of the worst betrayals I've ever heard and i hope this issue does not just go away. So who else is using bad stuff?


ok back to regular programming who knows their scores? who cares? i taught special ed so i never put any faith in standaridized testing . we change hourly so i think it's a rough estimate that serves some purpose I guess.

paula

Bandido 1 said:...
patient input.
www.parkinsonscreativecollective.org

Better yet....order the book now. Bob C[/QUOTE]

They quote Paula on the website. Order the book? Is that the book that has been mentioned here before ?

Creative Collective? Who are these people? Take me to your leader! And clearly there is a Bandido 1, but are is there also a Bandido 2, and a lot of numbers after that?
Yes, it has to be more fun to be in the revolution that to not be in the revolution.
Parkies of the World, Infiltrate! And then co-opt the Normals.

I only know what these kind of testing scales are like because of having a son who has had similar tests all his life. My testing was done by someone in a white coat, right before having an apomorphine challlenge, I was told what was happening, she did all sorts of scoring for things, declared that she thought I was developing a sensitivity to sinemet, told me she would be going on maternity leave, and I have never seen or heard from her since! By the time they actually got round to doing some of the mobility bit for the challenge, it was about 20 minutes too late, and I was pronounced not responsive to it.......

All these subjective things........

The thing I remember very well from that day is that she shoved a whole load of stuff and a large glass of water slipped off the edge of the table, and I moved faster than I had done in years - and that was before they administered the apo....... the glass didn't hit the ground of course, I caught it and got soaked...

Hi, Debbie,
Having seen a fair few of your posts, I suspect that this question is coming FROM somewhere......

Is this how researchers rate and log progress through studies?

I don't see how it can be a great way to do things.

If someone said 'I will see you every six months, and rate you, but take your meds at the same time and I will see you at the same time' still some people might display widely fluctuating rates of ability. Especially if they had cheese for lunch.....

As someone (thanks, Kath, for saying it for us all!) said just today, a PD patient could be different hour to hour!

My doctors preferred method of seeing how I am doing is getting me to walk 2 yards to the door, turn around, and walk back with my arms stretched out in front of me, like something from Carl Hernz's pd zombie movie, on the WPC site now! If you haven't seen it yet do so!

Lindy

Debi
I've been in enough clinical trials to know that both measurements are quite ambiguous, especially the Hoehn & Yahr. OK - we have a teachable moment here!
Hoehn & Yahr is a simple scale that rates theh stages of one's progression of Parkinson's. For the trial I was in, one had to be 3.5 (but that's fudging s bit). The scale is 1 to 5 (5 being the worst). In laymen terminology, 0 is the absence of any symptoms; 1 is tremor or only one side affected (a foot that drags, a tremor in one hand, etc.) At stage 2, both sides are affected, and 3 just adds balance problems. Many of us fall under 3 on this scale. If you are a 4 - you need a lot of assistance, and probably have to be in a long-term care or assisted living setting. Then the infamous 5 rates one as confined too a wheelchair or bedfast. I have been between 3 and 4 for a long time. The H&Y is just a rating instrument using observable symptoms only.

Here are the details:
http://www.allaboutparkinsons.com/ho...ahr-scale.html

Th UPDRS (United Parkinson's Disease Rating Scale) is MUCH longer and more detailed - it also includes questions about your quality of life, activities of daily living, Mood etc.
http://www.neuropsicol.org/Protocol/Updrs.pdf

Although not nearly as unreliable as the H&Y, the UPDRS has been under fire for needing change due to many areas being unreliable because of the subjective nature of the questions. And although the UPDRS has some non-motor symptom questions, it doesn't dig deep enough into the non-motor stuff.

Recently, I attended the Office of Biotechnology Activities and NIH Sham neurosurgery conference, and this was a bone of contention with me. In my opinion, Parkinson's is as much a mood disorder as it is a movement disorder. I made this very statement at this conference adding "If we don't start assessing both mental/mood status parallel wih motor skills, we will never find a cure for Parkinson's." I also mentioned that although there had been some changes to the UPDRS , there was still too much leverage with interrater bias. No one argued with me.

Here is an abstract on a validation study of the mental/mod part of the UPDRS:
http://www3.interscience.wiley.com/j...07370/abstract

Well, I didn't mean to get carried away on this, and could discuss it for at least another hour, but unless the readers want to know more, I'll quit here... (for now).

Five Years ago only two facilities were considered to be "trustworthy and expert" enough to safwly administer and successfully quantify the results.
The University of California and Mount Zion in New York. The doctor, who was evaluating me for DBS told me I had Delayed Stress Syndrome and would only accept the results at one of these institutions as evidence his diagnosis was wrong.

**