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