I would like to interview RLS and/or PLMD patients. (Update)

[staquo]

Thank you all for giving personal testimonies and voicing your concerns. In this topic, I posted a note of genuine appreciation for all the feedback I received. Please take a minute to read it.
PS. I think you would have to scroll down to the bottom. It is dated 4/11/07 by staquo.
-Sasha

[ViewsAskew]

Sounds like an interesting article, Sasha. I'm sure many of us are glad you are tackling it. I hope you get some people interested in talking. Post again next week (early in the week) if you haven't gotten any bites.

I deleted the mass postings, so sorry. This is a small board and almost all of us (if not all) read all the sections. It's gets really confusing to us when there are multiple posts, especially when different people post in them in different sections. I am sure that this is a great section for it ad that everyone will read it here.

Welcome!

Oh, just a quick note - RLS are parathesias - meaning feelings inside the body that make you feel miserable and make you want to move to get rid of it. PLMs are actually movements of the limb - from the toe, the ankle, the knee, or the hip (or elbow or arm) that are involuntary. A PLM feels like a jerk that you had no idea was coming. The body part flexes from the joint, stays flexed for a brief time, then relaxes again. In RLS, the only movement is to get rid of a sensation. Sometimes I argue that they are not of my volition, but they definitely arise from the need to get rid of the sensation. With a PLM, there is no sensation within the body that precipitates the movement.

[sugbrendas]

I don't know about a telephone interview for me but there is alot of long term info here or maybe you could post a bunch of questions and we could send them to you and stay incognito.

[D4]

I don't know about a telephone interview for me but there is alot of long term info here or maybe you could post a bunch of questions and we could send them to you and stay incognito.

I like Brenda's idea. I think you might get some more feedback if we can remain anonymous.

[becat]

I think this is important to help, however, to protect the board.
I wish everyone would contact her privately.
Reason being, this stuff on the board is not for print, It's people's own feelings, light bulb moments, and hard times.
I'm not comfortable with her just picking what she wants off the board and using it without the writer's permission.
I'll help as well, but will do so away from the board and through email.
No offense Sasha, this is a safe harbor for us. I hope to keep that intact.

Lynne/Becat

[Rubyslipper]

I do agree with Miss B, I would be glad to do a private interview but I would want to know what had been taken from here that I had said before giving permission for it to be used. I've said some terrible things on here and have hurt some feelings although I didn't mean to. Some things I've said are no longer true or are private enough that I would be embarrassed if they were brought up in public. I'd probably be embarrassed if I met some of you in person and they were brought up! I've been silly, thoughtless, rude and inconsiderate....bad enough to be that way to my friends; I'd hate to give people who don't have a clue about RLS the impression that we're all a bunch of dopes because of things I have said. You guys already know I'm a dope but I'm a dope on my own...the rest of you aren't! LOL

[sugbrendas]

I just think giving one's actual name out is kinda risky especially if you don't sign a disclosure. I don't mind someone using my screen name.

Why names at all?

[dellkr]

Just a suggestion, but you could create a survey using www.surveymonkey.com and give the link to the site here (with moderator permission of course!) We use this method constantly to collect data quickly for large numbers of respondents. You design your questions that you want everyone to answer (although it is voluntary to do so) and everyone remains anonymous...data is also compiled for you and I believe the trends in responses can also be captured.

Hope this helps!!

Kim

[staquo]

I want to thank you all for your contributions and concerns. It really challenged me to approach this assignment from different angles. If anonymity works best for you that is fine. I do not intend to post or print any material that others would prefer to keep private. I have read some posts by members on rls.org only to improve my general understanding of Restless Leg Syndrome and its severity. Anything that was not directly told to me via telephone by an agreeing member will not be included in my article. Through using proper conduct, my goal is to provide my English professor with personal accounts of living with the dibilatating disorder. I understand that experiences differ from person to person so I will not generalize anyone or anything and will use telephone interviews for support. So far, I have had one successful telephone interview and hope to have my final telephone interview this weekend. You all have provided me with more than enough so thank you once again for your responses.
-Sasha

[becat]

Cool Thank you for educating that many more people for us.

I hope you get an A+.

Lynne

[ViewsAskew]

Glad to hear that you were able to get what you needed, Sasha. I, too, hope you get a great grade.

[Rubyslipper]

I'm sorry the telephone interview didn't come off. I called but may have had the wrong day or time. At any rate, I'm still available if you wish. If not, then best of luck to you. Let us know what happens!