thanks for all the update info Sarah, Blue-eyes and Ezinda.
Just a thought, how are forum visitors meant to know there is a questionnaire unless they look back in thread posts?
GG

Thanks Vivian, sometimes one feels like just giving up. Deep Brain Stimulation has been suggested, but I'm too scared for that. Sounds rather macabre and irreversible to me - a bit "mad professor-ish".

Anyway, what time will you be round with my hug?

Ray.

Hi Ray,
I did reply to your last message but it seem to be lost somewhere, anyway I think it worth finding out a bit more about the DBS operation and checking out how many people on the forum have had it done who knows it may improve your quality of life. Also it did say that we should all have a hug at 10am and 10pm to keep us going.
best wishes vivian

Thanks, I'll look into all 3 suggestions!

Posted - 19 Apr 2012 16:05
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thanks for all the update info Sarah, Blue-eyes and Ezinda.
Just a thought, how are forum visitors meant to know there is a questionnaire about the Da/OCD problems unless they look back in thread posts?
GG

Still wondering...
GG

Still wondering how people know there is a questionnaire around....

Hi GG.

The way this forum seems to work is:

(a) The moderators briefly scan all new posts to ensure there are no profanities or anything which may be considered bullying or aggressive. Also to check there are no instances of the mis-use of the upper case.

(b) If they're not very busy they may (but with no obligation to do so nor act upon the contents, whether addressed to them or not) read the posts properly, and get involved in the content. This could involve taking specific actions or contributing to debates, providing background information and links, and correcting any factual errors.

(c) Any specific actions a member wants the moderator to take, question needing answering or suggestion considered can only be certain of being seen - and responded to if appropriate - if raised via an email ( (keep your copy) or PM (copy & paste to a store document before sending). I've found that you can go on posting and re-posting the same query ad infinitum and a response will never materialise. In most cases the moderator won't even have noticed or understood it.

Ray

.

I have generally found the moderators fair and well balanced and ...er...moderate!

Sorry

Me too.

My point was that we shouldn't rely on them to answer questions put to them on the forum.

The right way for us to contact them is by email, as per the guidelines.

Hi golden girl,
Thanks for your question.

It’s really important to remember that the forum is only one part of the charity and one service the organisation offers. If you rely only on the forum for all news and information about what is going on in the charity, you’ll miss a lot.

We’ve advertised the questionnaire as a news item on the front page of the website. As well, there is an article in the Parkinson magazine about the work of the ICB steering group along with information about the questionnaire. I will check in with the ICB steering group to see if there are other avenues that they are publicising this and get back to you. If you have other ideas about how we publicise it, do let us know.

Most of the community staff work normal office hours. We do have moderation outside of these hours but if you’re asking a question that needs input from Parkinson’s staff and you ask on a Friday evening or a Saturday, you may have to wait until Monday to get an answer.

I hope this helps. If there is more information, I will get back to you. Otherwise, if you have any other questions, please feel free to ask.

Ezinda