my first support group meeting

ctravel12 · Post by **ctravel12** » Thu Apr 26, 2007 9:12 pm

Hi Everyone. Just wanted to give you an update. We had 55 people show up for the rls support group. It seemed to go real well. My neurologist gave an excellent talk and showed some slide shows on info on rls.

I talked to the people and asked them if they wanted to meet every two-three or four months and their response was every two months and will see how that works.

Some seemed real receptive and thanked me for starting this group. So we will see how many show up. I know it is just the beginning but feel it is going to be a good start.

I can put an ad in our paper and there is no charge and will have it at the library again.

I had a sign up sheet with name, address, tel # and e-mail address and received 38 names so that is not too bad.

Post by **ViewsAskew** » Thu Apr 26, 2007 9:13 pm

Whoo-hoo! Glad to hear it went so well.

ctravel12 · Post by **ctravel12** » Thu Apr 26, 2007 9:33 pm

Hey Ann thanks. I am happy that it went well too.

becat · Post by **becat** » Thu Apr 26, 2007 11:25 pm

Charlene I'm so happy for you. That is awesome my dear.
What a charm we found in you, your heart, and your support.

How lucky is your group to have you!!!!!!!!

Yahoo!
Keep it up girl.
Love ya
Lynne

ctravel12 · Post by **ctravel12** » Fri Apr 27, 2007 12:53 am

Hi Lynne Thanks so much for your kind words. I am looking forward to the next one.

Have a nice evening and take care of yourself.

Love ya

chefws · Post by **chefws** » Fri Apr 27, 2007 1:24 am

That's awsome! I was looking into starting a support group where I'm at about 10 years ago, and the leading hospital sleep specialist said I should come to his speech about sleep disorders. So I thought that would be a great way to get some more information to pass out to prospective attendees.
After sitting through 2 hours of listening to sleep apnea, he said, and I quote: "Restless Legs Syndrome is also a sleep disorder that we treat" and that was it. I was mad to say the least.
I didn't have enough information to get started, and knew immediately that he would be no help. That was when I found RLS.org and became a member. I believe it was just starting up at that time, but don't quote me on it.
I am glad you have gotten together a bunch of us restless ones to support one another, my hat is off to you!

ctravel12 · Post by **ctravel12** » Fri Apr 27, 2007 2:03 am

Hi chefws thanks for the encouraging words. I really enjoyed the meeting today and looking forward to the next one which will be in two months.

Hey chefws you never know you may want to do this one of these days. I have been on this board since June or July 2006 and just reading about what was going on I felt I could help other people. Believe me I was miserable last year as I had rls 24/7 for about 7 months and this group has literally saved me.

I am sure that you have heard of the movie "Pay It Forward" well that is what I want to do. The group was here for me last year, now I want to be there for someone to help them too.

Take care and have a nice evening.

sugbrendas · Post by **sugbrendas** » Fri Apr 27, 2007 2:35 am

wow charlene,thats took alot of work and dedication on your part.
good luck!!!

ctravel12 · Post by **ctravel12** » Fri Apr 27, 2007 2:45 am

Hey Brenda thanks. I really appreciate everyone's comments. You are an awesome group. Thanks and love you all.

mikeyvon · Post by **mikeyvon** » Fri Apr 27, 2007 4:22 am

hi Charlene,

Just think how much better this world would be if everyone made the kind of effort you just made. You're a good woman.

mike

ctravel12 · Post by **ctravel12** » Fri Apr 27, 2007 2:33 pm

Hey Mike thanks for the nice words of encouragement. You just made my day. Thanks again. LIke I said before this board is so awesome and very fortunate to have found it and everyone on it.l

Have a good weekend and hope that everyone will be on the chat line Monday night.

stitch · Post by **stitch** » Fri May 04, 2007 4:57 am

Hi Charlene, When we moved to this area, near the beach a lady called me and wanted to start a group. I wasn't ready yet to get started but went along with her and helped to call people. We were working with a large area, people had to drive a long way and some couldn't so the 1st meeting there was about 30 people and after that it dropped to maybe ten. People were complainning that they had to come so far and we couldn't get any speaker so needless to say it didn't work out.

But I know how much work goes into starting one and my hat is off:D to you. I would do a little dance but don't think I can right now. :wink:

I will be posting soon about what is going on with me, have missed you all. Take care, Jeannie

ctravel12 · Post by **ctravel12** » Fri May 04, 2007 2:09 pm

Hey Jeannie it is so good to hear from you. You have been on my mind and wondering how you are doing.

Thanks for the words of encouragement. I have alot of it to thank for my neurologist as he got me started. I have the next meeting set for the 7th of June and right now we have 19 coming and am sure more will be here.

We are fortunate as it is not a large community. If you decide to do it again, you may want to start in a smaller area and see what happens. The first thing is that the Foundation says is that you have to have a medical advisor to get started. Do you have a good dr or neurologist that is very familiar with rls.?

I will keep you all posted on how it turns out. When I called people, they were very receptive and thanked me for starting this. The ones that could not make it I asked if they wanted me to let them know when the next one would be and they said definitely yes. The one good thing is there is definitely a need for it. I will keep plugging away and will make a go of it. I am very determined and want to help people.

Jeannie, I was so pleased to see your post. Please keep in touch and how are you doing?

Rubyslipper · Post by **Rubyslipper** » Sat May 12, 2007 1:53 am

Way to go Charlene!! You are off to a great start and your community should be very grateful to have someone as caring as you leading this. It isn't easy to stay motivated especialy if attendance drops. In our area, it is very rural so a good meeting for me is 10 people. But if you only reach one person and can make a difference for that person, then look what you have accomplished! Keep up the great work!

ctravel12 · Post by **ctravel12** » Sat May 12, 2007 3:42 am

Hi Rubyslipper thank you for the wonderful comments that you made. I am really looking forward to the next meeting. The foundation has been a real help to me. I just received some more material for the next meeting and they also sent me some pens and bracelets. The neat thing is that the ones that could not make it for this meeting in June asked me to please let them know when the next meeting will be.

I brought some new flyers for the next meeting down to my neurologist and will be sending some of them over to the drs offices.

I so agree with you that if I am able to help just one person then I have done a good job. Thank you again for the nice comments that you made.

This is such a wonderful group and love all of you.

Restless Legs Syndrome (RLS) Discussion Board