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

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

Poor Debi; not at all the answers she was expecting! I want to say thanks for asking this in the first place- this is one of those questions I have thought about asking others, but it always feels taboo.

I am not surprised by neuros not telling us our baseline. Really it is just a snapshot of how we are doing at a given point in time; this can vary quite a but throughout the day.

I think the Hahn & Yoehr needs a serious overhaul and maybe it has been updated? The newest UPRS does measure mood or non-motor aspects; there is now even a separate rating scale for cognitive function- all at The Movement Disorder Site.

I won't even begin to comment on using paper and pencil staging or rating scales in research- imagine that going over in cancer research! We are not alone in our frustration- MS patients are fed up too. However, I sense largely because it is not considered primarily a disease for old people, they have more nuanced scales like the one that measures disease impact on socio-economic status. We just have national orgs telling us how much we'll enjoy all our "early retirement" leisure time. They also have a patient-directed scale- overall, it seems like they have too many. See this site for details. Also wondering why we are staged other than for stab at validity in research? I have read that most YOPD won't see Stage VI or V because treatments functionally suspend us at a lower stage. Will they ever get around to sub-typing us at diagnosis? This is in more in line with MS types of remitting-relapsing and a much needed way of sharing prognosis. This info would be much useful than worrying about when everything will spread to my left side.

Laura

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...