Random, I know, but wondering...
 

I know this is wildly unscientific but I'm just wondering how many of you know your H & Y score? How about your UPDRS score? Were these stats you knew in the earliest months / years of your diagnosis?

Debi

PS--- if you don't know any of these things about your PD, I'd like to know that too.

Thanks for indulging my curiosity!

Busted!
 

I have never remembered to ask. I've seen them and kinda score myself but maybe I'll remember to ask next appt - who knows?

Debi-
PLM computes both for their database. Mine, for example, is H&Y = 3 and UPDRS = 16. I can't say that I ever use it because I've never been clear on whether one should be medicated or not.

I'm in the UK but believe these scores are used here too. Though I have been tested have never been told scores.

Lindy

I've never paid any attention to the scores. I watch my doctor write down the numbers as I respond to her questions (at this point still 1s and 2s). The total would be meaningless to me - but I admit that I do see an increase in the numbers as time goes by.

But I'll see her again in a couple of months for POSTCEP and I'll pay more attention then.

Jean

Quick response ...
 

Debi,

no idea and never been tested to my knowledge.

Neil.

..." how many of you know your H & Y score? How about your UPDRS score?
Debi

I have no idea what you are talking about. Diagnosed in 2004; symptoms since long before that; participated in several clinical trials; many cognitive tests; experimental MRI where I play a sort of video game while they take "pictures" of my brain; top level neuro 4 times a year; constant PD noise-maker on the internet, pretending I know what I am talking about,...

... and I have no idea what those initials stand for, and have never seen any scores about my condition.
Somebody is keeping score? Am I winning? Is there a shoot-out to break a tied game? Is there overtime?

But it is my own doing. I never asked any questions about the disease, the drugs, or anything. I prefer to bask in the pleasant light of my ignorance. It is not really denial; it's more like, I can think about other people having Parkinson's but for my own condition, I am not eager to know the details. It's a story where I don't like the ending or the role the producer gave me so I just try to pretend I forgot my lines, hoping to get kicked out of the play and they will tell me it was all a mistake - I am supposed to be in the audience applauding, not up there in the play.
But slowly the illusion becomes harder to maintain. Had some fun with it though. No regrets.
So what do those initials stand for? Is there a home test kit, like for pregnancy? Could we make money if we made it a board game?

I suspect that the real value of these rating systems is as a placebo for the researchers and neuros. With numbers they can feel in control of their world.

regs require something?
 

Apparently it's not a priority to us or we would be asking. Perhaps it's not a priority with doctors either but they have to show something in writing.

paula

i'm aware of these rating scales' use in studies, but never really thought about their use in a clinical setting. Never thought to ask about my scores either.
linda

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.

You Choose
 

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

PDRS;H&Y scores
 

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

Pet scan?
 

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.

paradoxica.....
 

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...

Thinking about it - not so random?
 

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 :)

Participants in Clinical Trials might know
 

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). :)

To Bandido1, 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.

**

Didn't mean to be coy...
 

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

Now we're talking!
 

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

anytime!
 

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

badido1...the book...your challenge
 

Bob Dawson..as with all puzzles.....here are some clues....
we have no leader
the authors are lurking ...close by
bandido1 was once thought to be a tv personality.....love that B--.

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.[/QUOTE]

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

MJFF gets it
 

Laura - I think Debi had her suspicions confirmed.

Fox is doing things right; it's too bad they can't do everything - but everything they do is done well. That includes regular consultation with patients. I sleep better at night (and at all of the other times I fall asleep) knowing they are on the job.

Random
 

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 :grouphug:

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.

inadequate to say the least!
 

We are well aware (and so are clinical researchers) that our current batteries of "measurements" are woefully inadequate. Efforts to refine these scales over the years (including the newest UPDRS) reflect greater appreciation for a broader array of symptoms at play in PD. And we are certainly acknowledging that this "movement disorder" is much more than a movement disorder.

We are utterly convinced that we need more informative markers (of diagnosis, of progression, of therapeutic reach)...all things that MJFF has been funding since 2002. The biology is really hard; the heterogeneity of the disease is confounding. But, we do have some good leads ($30 million later!) and this has led to the new biomarker initiative, PPMI, a $40 million initiative of it's own, to see if we can validate these possible markers.

I think many of you will appreciate what is going into the study (of 400 de novo patients and 200 matched controls). The study will document extensive clinical (everything from UPDRS, to depression, to cognition, to sense of smell) and biologic (DNA, blood, urine and spinal fluid) and neuroimaging. Some of this data will be pre-meds and some will be after meds. This will produce the most comprehensive observations of "early PD" and provide a rich data set in which to (hopefully) identify correlations and verify much more exact "measures" of PD---essential for clinical trials.

These "measures" become the "endpoints" that are evaluated in clinical trials--without improved tools, it's likely that trials may just continue on with mixed results and ultimately bring hope for progress to its knees. Can you imagine how transformative it would be if a brain scan, lumbar puncture and blood test could, with confidence, tell you what "stage" of disease you are in and how fast/slow you are progressing? It would not only improve information for patients/docs in disease management, but it would reinvigorate clinical trial investment on PD.

We are excited.

Debi

Thannks, Debi
 

quoting Debi: "Can you imagine how transformative it would be if a brain scan, lumbar puncture and blood test could, with confidence, tell you what "stage" of disease you are in and how fast/slow you are progressing? It would not only improve information for patients/docs in disease management, but it would reinvigorate clinical trial investment on PD. "

That is hard to imagine after 16+ years (for me) of trial and error in treating this disease. What Fox is proposing is long, long overdue, and were it not for the fact that you have your fearless leader (who just happens to suffer with the disease, also; I don't believe we could ever see such accomplishments.

However, we have our work cut out for us. With health reform being such an "unknown" entity at present, NOW is the time for us to show that those tests mentioned (scan, lumbar puncture and blood test) are covered by insurance, especially Medicare (as it now stands as the US main infrastructure for insuring the aging and disabled.) A battery of tests such as you suggest should not be reserved for only those who can pay - we (patients) must show the cost effectiveness of being able to know such results.

Debi, it would be so great to have a good way to know whether we have pd, where we are with it, and our progression, and it would be transformative, but only if it is done in a way that is accessible to ALL of the millions of people with PD, or at the very least aim to do that.

I am saying this not to, in any way, as a reductive take on what MJFF is doing, quite the opposite really. What would ultimately be truly transformative in a big way would be a way of doing those things that was fast, affordable, non-invasive, and on the lines of the amazing work being done by young Indian researcher Aditi Shankardass with youngsters with autistic type disorders and learning disabilities, that you can find at

http://www.ted.com/talks/aditi_shank...disorders.html

They are having amazing breakthroughs in understanding, and when I saw this, I immediately wondered if something similar could be harnessed for PD

Thanks for all your efforts

Lindy

scores, implications, board game, lollipops in Heaven and sex
 

Hi Debi and everyone,

Despite your faux pas of pairing "lumbar" with "puncture" before breakfast, you and MJFF are a beacon in my predawn sea of discouragement.

On your question, I guess I am the odd woman out. I attempted to use the H&Y and UPDRS tools on my own before I was diagnosed. I understood only enough to scare me. None of my docs then or since seem to take them very seriously, though they all seem to use them. When pressed, my doc confirmed that I would be "between a 2 and a 3" after describing the tools as Debi did…blunt and inadequate. That score, however, was so last year. I've graduated.

As I remember it, the tools were unwieldy. Perhaps the newer versions are not; thanks for the links, Laura!

A note of caution to my peeps who are better able than I to dismiss the importance of these scores. Guess who does look at them, and may or may not take them into account depending upon whether it's in their perceived best interests, and likely don't grasp the while-medicated, adrenaline-hopped or sleep-deprived doctor's visit snapshot nature of these measures.

Who takes them into account? The (USA) Social Security Administration--when evaluating your initial SSDI claim and then subsequent reviews. Perhaps your long-term disability company--when determining your eligibility or reconsidering your eligibility. Assisted living facilities' admissions directors who determine whether you are independent enough to move in or need to go to a nursing home. And possibly others whom we regularly must grant access in order to make practical matters happen. Like everything else our doctors put into our medical files, the paper or e-trail is no longer meant simply to remind them of key information on their way in to see us but also serves as evidence for legal, financial, insurance and other purposes. I know one PWP whose ex-husband used them against her to try to win custody of their children.

So, whether we may prefer to ignore them, I feel safer reviewing them--they actually are included and/or filled out as part of a standard template in many neurologists' VISIT NOTES. I ask for visit notes every time to check their accuracy, and to be sure they reflect my key points as well as my doctor's.

(Disclaimer: those of you in Europe or Canada, or other enlightened nations, probably don't have to worry about these barbaric acrobatics that we Americans suffer at the hands of our power elites and our own inertia. Take a moment and bask in the politesse of your superior health care systems.)

As for the for board game, Bob, I'm in, especially if it educates folks as to the non-medical aspects and implications of PD and prepares us for those battles! "Include respected/feared attorney's name on your initial SSDI application; collect $5,999!" "Get brand-name approval from your insurance company; sleep through 3 nights in a row!" "Finish reading entire clinical trial protocol before MDS enters the room; win $500 Armani reading glasses (or $75 reading glasses and a $475 food voucher)!" Well, you get the picture...

Last by not least: Laura, Stage 6 on H&Y would be, I believe, "post disease duration." That's the stage where we get reincarnated as small furry rodents in captivity! Sad but true. Fair is fair. Take heart though; after that, I am pretty sure we get to be reborn in Denmark. (Paula gets to go straight to Heaven, where she can eat all the dopamine lollipops she likes without getting dyskinesia or cavities.)

Now it's time for coffee, neuroprotective or not. :winky: BTW, of all the crazy things we test for neuroprotectivity, has anyone tested sex?

Oh Rose or by any other name, that is such good writing, such good thinking, such good humanity. Please write more.

Ummm, I'm up here in the Great White North, defending my baby seal meatloaf from the polar bears while praying for a rapid increase in global warming... Canada an enlightened nation... don't get me started... Our doctors are civil servants. They do not work for you. They are paid by the government and they work for the government. As time goes on, they are less and less in charge; the doctor is less the decision-maker; the employer is. The doctor is told how much he gets paid for seeing you. Normally, I get to see a neuro for 15 minutes, 2 or 3 times a year, and that is the sum total of the help I get. Doc is a pill dispenser.
In some provinces, doctors are obliged by law to tell the cops that they have found another Parkie. So, for example, you should not have a driver's licence. Out goes doctor- patient confidentiality, and bad people like some of my friends avoid seeing the doctor because the doc is a stool pigeon for the cops.
Health system here is good in that there is one cheque from the taxpayers; everybody is covered. Bad in that government is by its very nature incompetent to actually run the show. Should be a voucher system. Taxpayer would pay but clinic would not be paid if nobody chooses them. As it is, the hospitals are run like the post office combined with the tax department
And they do not want to hear your opinion, that is for sure. The attitude in some of our hospitals is less friendly than our prisons, according to some PWP I know who have frequented both. Present company excepted of course.

Rose- it took me 3 tries to get on SSDI and my neuro then was surprised when I told him I had to retire. I think he took it personally, he thought he was doing a pretty good job of making me 'look' good. This was before all the good non-motor stuff was out there for me to formulate in words just how incompetent I was. But I never thought about those scores even then. Good point!

Now, Now.........it's not that bad. You wouldn't want a Mirapex addled parkie mind behind a wheel dosing off and killing some innocent bystander.

I guess Ontario is the place to be for the good ones, i.e Lozano etal? Not to mention some of our scientific minds and discoveries.

.
True; or, much worse in some ways or places; much better in others. Personally, have spent days and nights on a stretcher in E.R. 48 hours in the hallway. Aggressively rude staff. Other hospital, same city: professional, care-full, wide-awake, team-work doctors and nurses. Both get paid the same; the ones who do a good job do so out of commitment and generosity, even though the pay is the same if they are just there to put in the union hours.
But I want to tell the Americans they are really good because I find it distressing that America gets so down on itself. I think us other countries have to cheer them up because they brought us lasers and Elvis and pet-scans and Count Chocula breakfast cereal. And a cure for any disease is more likely to come from USA than anywhere else, so we don`t want the AMericans getting all suicidal and pessimistic. At least until after they cure Parkinson`s.

PAN working with Social Security on disability reform
 

Rose - PAN has been working with Social Security to revise how they evaluate PD for disability; you can check on their progress here:

http://www.parkinsonsaction.org/pdform