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

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.

**

H & Y = Hoehn and Yahr score
http://en.wikipedia.org/wiki/Hoehn_and_Yahr_scale

UPDRS = Unified Parkinson's Disease Rating Scale
http://en.wikipedia.org/wiki/UPDRS

These are indeed clinical "measures" noted by physicians during exams (in and away from clinical trials) and over time change. These "ratings" are commonly perceived as inadequate, blunt measurement tools and its no surprise that the terms don't come up in appointments with physicians--their usefullness is highly limited/suspect. In fact, our upcoming biomarker study (see more here www.michaeljfox.org/ppmi) is focused on developing objective measures of disease progression...something that would be useful in the treatment setting and transformative in the clinical trial setting.

The reason I asked for your experience is that as we work on projects for clinical trials we see some instances with science speak is put forth to patients and my suspicion was that would needed better ways to learn from patients about their disease stage and rate of progression (clinically and biologically)...so, my vague, general question was just to test my gut feeling that some tools were using terms with patients ineffectively. If you guys don't commonly hear/know your scores then it is safe to assume most patients don't.

Thanks for sharing and helping us learn how to best engage patients on such matters.

Best, Debi

Yes! This is exactly what is needed! We need to not only address the language, but the ambiguity of a 5-point scale which is nearly always used to screen patients into a clinical trial!

Thanks, Fox Foundation! (You, too, Debi lol)
Peg

I sincerely hope that isn't the only measures they use for clinical trials, especially when compared with a placebo. Sounds like you are understanding where we are coming from and i won't hold you to that just accept my compliment.

ha great minds think alike and then there are peg's and mine.

Thanks Debi,

For more than just asking, but also being a part of something that recognises that there are inadequacies in the way information about PD is acquired. The patient IS the key, and unless asked in the right way the questions will get fuzzy answers that are open to subjective interpretation, or misinterpretation.

The scales are weird anyway, you could be stage 4 when you get up in the morning, and practically normal when everything is working right. Even the patient is not really aware of what stage they are under the medication.

You are on the right track, this is the way that research design needs to be rethought.

Best Wishes
Lindy

Hello all, I am classified as stage 2 on H&Y. The other one, I always want to add notes or be somewhere in the middle of the choices. They Doctors or checklist people don't quite know what to do about things. I agree that any rating scale has numerous variables, especially with a disease that flucuates minute by minute. I too was a Special Ed teacher,like Paula, where you needed to respond instantly to behaviors, taking into account the child,environment,time,bus trip to school, what they ate for breakfast, etc. Basically, you needed to know the child. I will ask what my score is next time I'm at Northwestern. I guess science has to be data based and the Doctors need scores to compare with other scores. Thanks for asking Debi.
Cheers,Fran

Forget Parkinson's for a moment. What you just read is everything that can be said about teaching children. You need to know the child.
Now zoom back to Parkinson's again. You need to know the person, and respond to that person.
And everywhere else, too.
And you can specially see how things are coming along in society if you see whether or not the "special ed" kids are being treated as real people, and there are immense struggles to help just one of them; or what happens with people who have an unpopular disease.
It's supposed to be like Franny and Paula describe it.
It's supposed to have that spirit.
I don't know how to describe it well
but it is something about people looking at each other and actually seeing each other and it is something about reaching heart to heart to bring out the best in everyone, instead of bringing out their worst, which has something to do with a sort of loving openness to the many different shapes of the heart; and to go out to the front lines of teaching or healing or protecting or rescuing; you see it all, the good the bad the beautiful and the ugly; and it is very important that you come away from it grateful for having seen so much human life up so close.
It ain't easy, but look out -- it is real.