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.
doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

How to find??

Post by doety »

I've noticed that when I ask people at the Denver support group meetings if they use our discussion board, I get blank looks.
I wanted to tell one of the leaders how to get here. I have it under "bookmarks" and never go through the main page. But I did, just for a trial, and I couldn't find it. There is no "discussion board."
I believe it's awfully hard to get to us. What can we do about that? Seems like this should be easier.

ViewsAskew
Moderator
Posts: 16101
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I agree that it's not easy to find.

If you go to the main RLS.org site, look for Connect with Others on the left side of the page. The link to the Discussion Board is beneath it.

The problem is that it's NOT in the main headers at the top of the page and most people don't expect different links below those heading links.
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.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Post by doety »

Well, Ann, you're a Very Important Person, and I think you should tell them (whoever them is) to fix it!! We want to be inviting, not confusing.
I know you agree with that...and seriously, I wonder how one does go about getting something like that changed?
When we first started in 1994 (?), and I had a question, I would just call up Pickett Guthrie in South Carolina. She was one of the first people on the national board. That was at the same time I started a support group in Colorado and was running our group from my bathtub, which is the only place I was ever comfortable (augmenting with Sinemet at the time). Pickett was a wonderful, dear woman and I loved talking to her. I hope she's still around.

ViewsAskew
Moderator
Posts: 16101
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I'll send them a note :-).

Hearing from you that none of your support group can find it should help.
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
Moderator
Posts: 16101
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I know the money is extremely tight....

Maybe we could have a collection fund to overhaul the website and upgrade the discussion board to the latest version :-).
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.

Polar Bear
Moderator
Posts: 7863
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

I don't mind chipping in.
This discussion board has given me many years of support and I'm happy to do what I can.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Views, you tell me what you need and I will do the best I can on my end to get it done. We have a BOD meeting in November so let me know. I am afraid that sometimes (many times) our support portion gets ignored in favor of more "important" things. The problem is that those things are not listed on the website and there isn't much in the support department there either.

There are lots of things going on that no one knows about. I am pushing for more active support help and would love some feed-back and ideas on what we could do.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Post by doety »

Hello Ruby Slippers...haven't met you. Thanks for all you do!!

I'm not sure I can think of anything more important than helping people who are up all night pacing the floor, thinking they're the only ones in the world with this problem. I can't tell you how many times the people on this board have saved my sanity. Just knowing that it's okay to "whine," when things get really bad. I get instant, total support when I come on this board. I would hate for people not to get that same support just because they don't know about this.

Of course, we desperately need research done (it would be nice to know what all is going on right now....maybe it's there and I just don't see it). I'm so glad we finally have people paying attention and working on that.

When a person first goes on www.rls.org, having clear directions would be such a help. Right now, all I see are "support groups." But if I go on that, I don't see the discussion groups. I have mine fixed so it goes right to what I want, so I tend to forget how hard it was to find this.

Please let us know how we can help you, or what you need to take to the board in November. And, thanks again for the work you do.

ViewsAskew
Moderator
Posts: 16101
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I've recently been working with a new client - she's a "human factors engineer" (HFE). Human Factors is the new term for the field we used to call ergonomics.

I've learned SO MUCH while working with her. I'm helping her create a curriculum for IT Project Managers to learn how to incorporate Human Factors into their projects.

While doing this, I've learned a lot about how poorly our interfaces can be designed, without us really even knowing it.

I've learned to use very fast/easy tool to assess a website and see how easy/hard it is for people to use it. My guess is that this would be the best way to help us find the top areas to address. This would have to be done prior to the Nov meeting so that you would know exactly what needed to be changed.

The tool was designed by a well-known person in the HFE field - and was designed to be used by non-HFEs to identify top issues without spending a ton of money on user-testing.

Maybe the three mods and Ruby can work together to conduct this review.

Let me know what you think.
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
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

I think that would be a great idea. As one person pointed out, when you are sleep deprived anyway, the slightest problem becomes overwhelming. If it doesn't come easy, they just may give up.

The mission statement for the Foundation is to increase awareness, improve treatments, and through research, find a cure for RLS. As another person pointed out--it doesn't say anything about support. Yes, we have support group leaders, the discussion board and now facebook but it doesn't seem that they are getting the work done. So I feel we need to find out why and how we can make them better.

The second biggest problem we face right now are the people who want help, want it NOW but don't want to do anything to make it come about. They don't want to look or read, they don't want to help, they don't want to donate, they just want to complain that nothing is being done. I realize that most of those people will continue to complain no matter what we do but from those people we also find out what isn't working. Like making the discussion board easier to find and join.

So yes, I will be glad to work with anyone to address the problems we have. I also want to know about other problems and any ideas on how to fix them. There are some great minds out there and we can use all the help we can get!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
Moderator
Posts: 7863
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Ann - not quite sure what you mean by conducting a review, but just set me on the right track etc. .....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Post by doety »

Ruby:
Our discussion leaders do a yeoman job of responding quickly when someone needs help -- they work really hard and are probably worn out. I do think the goals -- research, awareness, treatments, are all goals we'd like to see met. But: a cure seems far away. What's happening right now is that we're being tortured by this mess.
And I think all of us know how alone you feel when you have WED/RLS and when nobody understands and/or even makes fun of you. I believe if we had access to deaths from suicide, certainly some of them would be from RLS. At times, we all need a place to turn and I believe the discussion board is crucial.
I wonder if you could post a list of jobs that need doing -- and ask members to volunteer. Maybe, in some cases, we could volunteer a certain number of hours per month so some people won't get burned out. Part of the important help we get is from others who have experienced what we are experiencing -- and obviously we need to attract people to the site. Otherwise, people get used up.
I know yall have a huge job. Good luck and please let us know what we can do.

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

PLEASE don' t think I was abusing the moderators here--I KNOW what a great job they do. And it certainly is not their fault that the discussion board is so hard to get to. I think we can work on that to make it better.

I have said for many years that we have great people out there who would gladly help out if they were just given a job to do. The biggest problem with that is the fact that the Foundation staff is so small and spread so thin they have no time to take on training and following up on volunteers. Besides just trying to figure out what needs to be done first!

Facebook is a case in point. It is a great idea, current with the times and a good place for support. But, the Foundation does not have time to monitor it on a daily basis and it has gotten completely out of hand at times. I do what I can on there and have been royally trashed a couple of times by people who don't like what I have to say or who differ from my opinion. Differences are fine and good but you have to respect the person no matter what their opinion is and that does not happen sometimes there. I can't call them on it because that makes me look as bad as them!

If we could find one or two areas that could really help and outline how to go about that, I could take it to the board and possibly set up a task force of board members and volunteers to get something done. I think getting the discussion board easier access and greater promotion is one place to start. I know Views has started on that.

So just let me know more of what you think and see what we can come up with.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Doety, I forgot to tell you. Yes, Pickett is still around and has been a major mentor to me. I also think that the board should be more public. Maybe not in what we do (some things cannot be made public right at the time) but in who we are. I have alwayse felt like the board was some secret club no one was supposed to know about--and I'm one of them! We sometimes try to put info in NightWalker magazine about a board member but that doesn't go far. That's an area I can bring up--making the board more accessible.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Post by doety »

Glad to hear that about Pickett -- don't know if she'll remember me, but please tell her hello. We're both Southern, so we bonded!
I'm a writer (and I know Ann is too), so if I can do anything in that area, let me know.

Do you need someone to operate the website, and make changes when we need them? Supposedly, it's not that hard anymore. That's certainly something you could advertise online for -- what a big help that could be.

Don't worry about those people who fuss at you...you're doing your best and it's a lot more than most of us are doing.

Post Reply