Best time for Support Group meeting?

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ViewsAskew
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Re: Best time for Support Group meeting?

Post by ViewsAskew »

Much thanks for the continuing giggles! I've slept a whopping 90 minutes and need something to make me smile :-).
Ann - Take what you need, leave the rest

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Polar Bear
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Re: Best time for Support Group meeting?

Post by Polar Bear »

I'm not sleeping either, it's after 3am and the 2 grandchildren arrive at 7.15 for a 12 hour shift.

I'll bet there are many folks doing their pacing now who would love to have a support group regardless of what time it was held, within reason.
It's just reaching them and letting folks know that there is indeed support available.
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

badnights
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Re: Best time for Support Group meeting?

Post by badnights »

I don't know why I have so little energy these days. I can't get on this board, or do anything, I get home from work and that's it, I'm bagged.

I just got hungry while laughing at the preceding posts

Second meeting no one showed up. So I will stick to Saturdays from now on. It's much better for me, too, because my symptoms usually require me to stand by 5:30, and also because I have to leave work "early" to do it, since I start and end late.
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.

Maria
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Re: Best time for Support Group meeting?

Post by Maria »

I'll bet there are many folks doing their pacing now who would love to have a support group regardless of what time it was held, within reason.
It's just reaching them and letting folks know that there is indeed support available.


You are so right -- and I've been thinking about this one.
First, a support group is not unlike almost any local business - a restaurant, for example. How many times have we noticed that cute little noodle shop, or the little Italian place that just opened. We've intended to go there soon only to discover that it "just" closed; "just" closed after two years!

Two years is not an unusual length of time for a business to be open before realizing a reliable clientele. It takes time and consistency. The problem is that most businesses are not capitalized to endure that length of time without reliable revenue.

We're lucky with our support groups. The only capital we need is time. We are already spending that freely to find a room, prepare a program, ask for donations for refreshments, and maybe even for printing flyers (although the WED Foundation can help a little bit there). We even have each other for encouragement and commiseration. Hang in there, us!!

Second, There is a support group for pacing folks, regardless of time. It's right here!
The only problem is finding one's way to where the live support actually is when one's logged in to the forum.

I'm rather new to posting here -- other than a few times when I was frantically searching for help with Rx. I found it rather intimidating. Even though the moderators are saints on earth, and clearly kind, it felt peculiar to one long accustomed to reticent privacy to be sending messages out into the great world. I'm still not even sure how forums work (tho' am fairly tech savvy -- just have never hung out on chat or forums). There's probably a way to have live chat on this forum, but I don't know how that works. That may already exist.

Point is: I'm wondering if there would be a way to set up a regular schedule for volunteers -- moderators and/or existing support group leaders -- to hang out here and offer support on the spot. The wonderful moderators respond with lightning speed already, but I wonder how it might be to have a schedule posted -- perhaps even on the WED.org main page, with links to chat -- so that any time of the night or day anywhere in the world restless browsers could find live help.
Even if it weren't possible to offer 24/7 at first,, a consistent schedule would slowly, slowly attract visitors.

Just thinking out loud (didn't take me long to get the hang of that, did it.) :)
~Linda (aka "Maria" -- see! told ya I was intimidated. I had to start behind my alter ego's name ~lol)

ViewsAskew
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Re: Best time for Support Group meeting?

Post by ViewsAskew »

We used to have just that, Maria. We had a chat leader and schedule calls. People could, however, use it anytime if someone else was here. The software to run the chat eventually stopped working and then was removed from the site. I do not know why it was not replaced.
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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Re: Best time for Support Group meeting?

Post by badnights »

Maybe because it was used so little. It might work better now that we have so many more members. Also we would need to set up a time period during which one or more of us would be sure to be present.
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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Re: Best time for Support Group meeting?

Post by ViewsAskew »

badnights wrote:Maybe because it was used so little. It might work better now that we have so many more members. Also we would need to set up a time period during which one or more of us would be sure to be present.


Many people participated. I think the Foundation may not have known how much it was used. As moderators, I don't think we've been as good as we could about letting the Foundation know what value we provide. We do a good job (I think) and so they rarely have to come here to fix things or solve problems, so they don't necessarily see all the great things that happen here. I know they appreciate us tremendously and think the board provides general value - just not sure they know the specifics.

If we want to do this again, we'd need to find a program for them to have installed. Then, they'd need to raise enough money to pay for someone to install it. We'd likely have to tell them how we'd use it, create a plan, and find a leader to spearhead it on here, along with finding someone (or several someones) to lead the actual chats.
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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Re: Best time for Support Group meeting?

Post by badnights »

I didn't realize it had been popular. It was more or less defunct by the time I joined.

I know better than to offer to spearhead it. I can't even keep up with moderator duties here, let alone take on something else. But I would have loved to.. back in the day...
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Best time for Support Group meeting?

Post by Polar Bear »

The chat room was on the go in my earlier days here on the Board but I never participated and don't know how many members would have used it.
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

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