Restless Legs Syndrome (RLS) Discussion Board

For along time I have been thinking every now and then about my experiences with RLS and sharing them with others.. Do I want to write a book? do I want to start a web site?

I'm not sure if anything would really come out of this or if it's just a whimsical fantasy..

Even though we do have a handful of sites which are good resources for RLS, we don't really have a distanced, clearly non-pharma industry connected site dedicated to RLS.. Dispelling the the myths, discussing treatments, coping mechanisms, information on the disease itself and what research is out there, put into terms for the lay man. RLS Rebel's site and Dr. B's Q & A sites are both good ideas, but they tend to focus on particular narrow subjects and don't really fit into the "all in one stop" category. Whereas we need something like an RLS Wiki.

It would surely involve a lot of work, scouring the web the all kinds of info and putting it out in ways people can relate to and understand, but I wonder if it wouldn't be a good idea for a project.

I'm sure you guys would give your support and say it would be a good addition to our Internet community, but maybe you could talk with people you see every day, or time to time.. Maybe people in your life who are skeptics, or want to understand but just can't, or don't have time to google site after site looking for information..

See what they think? Would they visit such a site? Would they believe the information they read, etc.

Good idea...good question. Wish I had some answers.

I can't say I actually personally know anyone (besides my direct family) with RLS outside of this website. So, no one to ask but the people here...

I'd guess that most people find what they find from a simple search, so search engine optimization would be essential to drive initial traffic. Getting placement on some of the heavily trafficked sites would also help.

Believability? Huh. Seems a lot of people believe whatever they read first. There are some skeptics who want to ensure it was accurate, but what would make them believe? I started to describe my belief system re. RLS, but it was just too difficult to explain, lol. I think what helps me most is simply providing links that show the evolution of the thought process or where the info came from. It allows me independent verification.

Brain is really in pain today...that's as much as I can think of right now. Hope that others respond. Off to take some ibuprofen to see if I can make the giant stop squeezing my head...

Good points, thanks for the feedback.

I know I would definitely have hyperlinked sources to PubMed or other medical database web pages to confirm what is being talked about, much like a research paper or Wikipedia.. Have all the sources numbered and then listed at the bottom of the document.

I think you should go for it, Zach. You're good at sharing complicated info in a very readable way. As RLS gains attention (and dare I say respect) you should have a growing audience.

Z, I also think your idea is a good one and worth exploring. Not to minimize any of us who have rls, but I think, from just knowing you on the board, that you have "experiences" somewhat different from the rest of us or have been effected by those those experiences in different ways. In some respects, you live what we fear. Again, hope that is coming out the right way. So, I think your offerings would perhaps come from a somewhat different perspective though one that, while not necessarily unique, may be different enough to make it stand out or catch the interest of others. Good luck, M.

Zach, I agree with the above posts. I always enjoy your postings, and find them informative. I feel you do a lot of research and then relay it to us in a manner that we can understand.

I think you may be a good ambassador for rls....

I agree too Zach

Corrie

Oh, heck yeah, do it, Zach. I remember when our high school class had a reunion, I kept trying to tell the committee to set up a free blog site... I think it's something like www.blogspot.com... so we could all go there and talk to each other. I reckon you've come across sites like that, where YOU get to be the boss and have a weekly blog or whatever, just saying whatever is on yer mind for half the page, then announcements, new info, links, books, pics, etc.

You could also have a Q&A section, like letters to the editor, where YOU answer selected questions, for the good of the whole. Then of course you can have folks post in a forum type place, too, like this website has. Plus you can put links, and so on and so forth. Maybe even some guest "columnists" might work.

Me, I worked in the newspaper business for many years, big papers, and small ones where we did the entire paper from scratch to delivery, and I also started up my own little photography journal for a while, a bunch of stuff, and loved every minute of it. Right now I'm working on a book of fiction short stories, REALLY hard work and takes forever, but absolutely the most enjoyable sort of thing for independent folks like us.

Anyhow, these days, with the internet, it is even better than paper writing, becuz you can build up a blog site, and then if you get sick of it, you can turn it over to someone else or tear it back down! (I always look for "exit" strategies when it comes to business.)

Come up with an angle, a quote that represents what your site is. Kind of like a subtitle. Most newspapers have it, like the NYTimes, WashPost, etc. It will help you stay focused on what you're doing the first six months or so. Later, you can do a "new and improved" site that is more versatile and perhaps a new "mission statement" will reveal itself as you see how the blogsite is going along. It takes on a life of its own, things like that.

Just be sure to let us know when you're up and running, so we can all visit you!
GG

I will definitely put some thought into this. I've gotta come up with a few bucks to grab a domain name, since I already have loads of space on my Magazines web host. I've kind of missed working on the Magazine too, haven't done anything in a year or two. Guess I am looking for new ideas to fill the gap.

Zach,
I had a domain one time, too, but had to shut it down becuz of cost. But blogspot.com is FREE, the way I remember. Also, some home pages, depending on your server, have a little free one too, but they're not as well-developed as blogspot is.
GG

I've had a lot of experience with web development, and hosting that goes back to my teens, but to be honest a free site is crap to me. I just have higher standards.

I'm also a bit of a control freak, and I need total control over what goes on the server, who has access to it, and I don't like a lot of free sites because they stick all kinds of ad banners and technology limitations on their hosting. X amount of space, X amount of bandwidth per month divided over days of the month, X amount of images, can't host this material, can't host that, no PHP, MySQL, etc..

It's just a personal choice I guess. I already pay for hosting my magazine, and I can attach more than one domain name to my account to run independant web sites, so it's just easier for me.. I don't think I will be going for the blog look either.

Truth is, I'm not going to bore you guys with specifications you have no clue about because I like you too much. Just trust me when I say I hate free sites and my web server is loads more flexible for anything I might want to do.

Not trying to put down your advice, just trying to explain my reasons.

Zach, in my family of engineers, we call these "specialty subjects" and when I read your post I cracked up. My SIL and I have sat through more discussions than we can recall about cameras, web stuff, computers, electronics, pianos, etc. And, usually, we had NO clue and less interest about the subject.

We have one bona fide Aspie among them (people with Aspergers are notoriously intelligent and get hooked into something that they love to distraction and have a hard time discussing or thinking about anything else). I always joke that if you combined the others, they'd make an Aspie with OCD (they each have some of the characteristics - it's the Aspie that has them all).

Oh, of course, Zach. No need to splain how come you don't wanna free website. I too am an expert, altho the world is indeed full of armchair philosophers. And sorry, I didn't mean to imply you're only "free website" material. Smile. Everybody here is impressed with you. But you know what, I hate death metal because I don't like it when they yell at me. For I am only a little white rabbit, who likes to flip her ears and shine like a star. But even bunnies have a bad day and will bite, which I have bitten a few docs, but never shall I harm a fellow hare.
Yours truly, GG

I must amend my previous post! I USED to be an expert. Heck, I can't even get my Avatar up. Also, I think I WOULD harm a fellow hare, for I am not perfect. GG

Zach wrote:Even though we do have a handful of sites which are good resources for RLS, we don't really have a distanced, clearly non-pharma industry connected site dedicated to RLS.. Dispelling the the myths, discussing treatments, coping mechanisms, information on the disease itself and what research is out there, put into terms for the lay man.

The more RLS web sites the merrier but how would it be different from the main RLS Foundation's web site or Wiki's page on RLS?
http://en.wikipedia.org/wiki/Restless_legs_syndrome

What do you mean by "non-pharma industry connected site?" I guess I'm naive for I don't see what that matters. I doubt these sites are holding back any research if they're not contributors, that is if I'm not reading too much into your statement.

Go fer it! I agree that free sites don't give enough control and they probably won't be taken as serious as you're wanting it to.