perhaps just add the word control to the non-pd so:

non-pd control participant

Debi,

I agree with you on the use of "healthy"- this can be confusing.

I think that PD-Patient Participant and Non-PD has the most clarity and neutrality.

"PD Community Volunteer" sounds nicer but I think the "community" may cause some confusion too.

-Laura

yeah - the use of "community" somehow connotes volunteering in a broad sense - not as a control in a medical study. PD & Non-PD is clear.

people with pd and people without pd

typng as i think out loud
 

for symplicity, is the nonpd control participant redundant?

another suggestion:just assume pd is understood. you could just go with:

patient participant and control participant= patients vs.controls
or
pd patient and control partcipant = patients vs.control

I would think that whatever you do it will become abbreviated to patients vs. controls in everyday usage.

I guess it's that old chestnut that psychotherapists often call their patients "clients" (that is if they themselves are not doctors). It's a subtle thing, but a newly diagnosed person might be sensitive about being plunged into the world of Patienthood, with all that implies, and more than likely is still adjusting to the whole idea of suddenly being part of this pessimistic category.

You know, in this world we need every bit of optimism and faith we can grab - I often wonder how we all would have done if our communities had rallied around us with every expectation that somehow we would get better and improve, rather than being separated out, with all voices of medical authority - even the girl at the desk - reflecting back our expected failure and demise. It's a really hard sentence to commute, even with the best behavior.

What about: Studied Group and Control Group - studied is not quite right, but something meaning investigated, or some other word like that...help me out here someone....

Some of the newer nomenclature for what we usually call PD, often meaning a breadth of parkinson's and isms, is simply 'parkinson' which includes everyone, which might be useful in terms of this study.

Parkinson participants, and control participants seems to me the most neutral and least confusing.

I am surprised that volunteer seems to be out of favour. It is the one I would add. There is a great tradition of voluntary participation in all walks of life. It is something to be proud of.

what is real
 

Now I'm thinking that non-pd control participant. sounds redundant. i think you should base your decision on what is real. That is, pwp are parkinsons patients. i would love to see the 's go. it's a nuisance and the doctor is still honored.

So what is real? we are patients, when in a clinical trial we are thought of as subjects. This is a loaded statement and i could write a term paper on why i don't like that term. Instead I'll sum it up by saying we are called subjects and treated accordingly. This is discrimination, it's demeaning, it's got the patient in a position of submissiveness and none of these manners of thinking are going to get the most out of any study. Doctors are going to have to adapt to the newly educated and articulate patient online. And perhaps reexamine what they include as randomization.

i can see it being reduced to patients vs controls anyway-in our thinking and we should attempt the most said in the fewest of words. It should slide off the tongue easily [another reasons to discard the 's. ]

i understand what you are trying to say fiona, but a roomful of classically trained scientists wouldn't -orwouldn't care. I wouldn't be surprised if someday people will have a number for a condtion and another number for the solution to it. I envy you for being able to search for healing as you do fiona; i use different terminology but believe in the absolute power of healing - i cant' figure out how much intensity to apply.We need more spiritual time, which is as powerful as you make it.

Back to the point-i don't mind being referred to as a patient. But call me a parkie and i'lll ask you not to. It minimalizes pwp.[in my humble opinion] Parkie and newbie...not too cool. i'm getting older i guess. We don't call patients with terminal illnesses like Huntington's "hunters"or "hunties." Or diabetics "sweeties"

So i think the names should be to the point, brief and easily abbreviated. Hopefully what they discover will lead to positive and meaningful terminology. that distinguishes some of us from each other. I have a tremor under my chin and at the top of my neck.. THat's the only place i do tremor, so obviously my brain damage is more at the brain stem???? i don't know but I know not eveyone has this and it probably is serious. Then what will it respond to in the treatment field...uh.....being asleep. That works.

So good luck with recruitment. could infomally call for generally healthy people so they know what you mean, but the more you learn the more terminology will be needed for subtypes/categories. Let's not take anything away from James Parkinson except the 's.And it's interesting to watch the process.

good luck.
paula

What's in name?
 

I think a lot. I thank you too, for asking.

I consider myself to be extremely healthy. I never think of myself as having a disease, or an illness but rather a condition. So I am offended by the labels of heallthy and unhealthy. Why not just PARKINSON AND NON-PARKINSON (I agree about losing the "s"). I also don't like being called a patient because I am only a patient once or twice a year. The rest of the time I am no more a patient than anyone else.

Again, thanks for asking.

Interesting discussion. Never thought of labels.....
I would use simple terminology, for eg., study volunteers were divided into three groups
1. no PD symptoms termed control
2. with PD symptoms, not on meds, untreated
3. with PD symptoms and on meds termed [B]treated
[

Girija