How to find??

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Polar Bear
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Post by Polar Bear »

Ruby, I am happy for you to use any comment I have made. Thank you.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Post by ViewsAskew »

Anything that helps.

We could do a poll somewhere, couldn't we? Does Facebook allow polls?
Ann - Take what you need, leave the rest

Managing Your RLS

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Rubyslipper
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Post by Rubyslipper »

Hmmm, I don't know but if so, it would have to come from the Foundation as moderator. What would you like the poll to ask?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Post by ViewsAskew »

We'd want to ask about their experience using RLS.org. A survey could be created through Survey Monkey (Or similar tool) and a link placed on the website's home page, here, and and Facebook. You could also mail it to members, if you wanted.

Questions might be things like:

Have you even gone to rls.org?

If so, how often do you go?

When you are there, what do you do?

Select the services you've used on rls.org (then have a list where they can check all the things they've ever used - also, this could be combined with a how frequently do you use that service)

Have you ever joined the rls.org discussion board? (if the answer is yes, they would go to one set of questions, if no, they'd go to a different set.

For yes:
How do you get to the discussion board when you visit?

Do you ever go through the rls.org site when you go to the discussion board?

How would you rate the ease of getting to the....

etc.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Post by badnights »

Ruby please use my comments.

Ann, the useability review (or hwatever you called it) is a great idea.

I think a survey should wait til we have re-vamped the website or least done a couple of basic things - like the discussed link to the discussion board (!) and re-organizing the links into a single menu bar. Otherwise, we're just going to get inundated with the same complaints. Also, the RLSF had a page that asked for input on the website, what happened to the data collected on that page? It was sometime last sprng or winter maybe.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Post by ViewsAskew »

Beth, I think Ruby needs some data to take to the board meeting to back up her voice that we need change. Hence the idea of the survey.

But, I think the review (technically called a Heuristic Evaluation, lol) is great data to show. People in design teams use these and they are considered data points.

So, we may only need that to start.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rubyslipper
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Post by Rubyslipper »

I agree, a survey will probably just show us the problems we already know about. At the same time, it would be back-up for the board meeting just as Views said. Bottom line, I think the survey should be done now and after making changes, do another one. That would also let us see how many people just want to gripe--if they have the same problems that we already fixed!

As for the other survey--I'm not sure there was enough response to evaluate.

Do you want me to talk to the Foundation about the survey? We need to get on it quickly if we do.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Post by ViewsAskew »

I think it's an important thing to do. As you mentioned, it does several things.

1. Validates what we know (or tells us we're off base)
2. Shows others what many of us believe, not just those of us who are vocal
3. Provide a very important piece of data to compare to in the future. We can't prove how we improved without it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Post by ViewsAskew »

YIPPEE!!!!!

Rubyslippers took the information we compiled, presented it at the board meeting, and they made changes almost instantaneously to the website.

I'd love to hear some feedback from anyone about if it seems to work better.

Seems MUCH better to me.

Now, on to updating the discussion board software, our next big push. Fingers crossed everyone!

Thank you, Rubyslippers
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rubyslipper
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Post by Rubyslipper »

Let's hope now that we can finish it up and make the updates we need! I give full credit to the moderators for all their hard work on this board. You guys are the best!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Post by Polar Bear »

Just shows..... if you don't ask, you don't get !!

The Discussion Board is right at the top under 'Connect with Others'.
http://www.rls.org/
Three Cheers, Hip Hip Hooray.

Big thanks to Ruby.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

doety
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more

Post by doety »

I've been out of touch with these postings -- I didn't get one of those emails you usually get, saying someone has commented on the thread (wonder why?). Anyway, Ruby and all, thank you so much for your work. Sounds like a lot has happened.

Having a hard time...you know how pain makes RLS/WED worse? I had one of those magic shots (steroid? cortisone?) three years ago and it worked wonderfully (my lower back is smushed up, I think). I guess the shot has worn off. Just had an MRI and xrays and all I can do is try to stop the pain...Methadone, Motrin, pot and now it's starting to ebb, but obviously I don't want to live like this.

Is there more to do? Can I help? I know it's too late, but you could use anything I write, anytime.

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