Friday, March 30, 2012

Board? What Board?

Some of you may know that I am on the RLS/WED Board of Directors. In some instances, that means a lot--in others, nothing at all. The main thing is that I suffer just like all of the other RLS/WED people out there. Secondary to that is being on the Board; although if I didn't have WED then I wouldn't be on the board.....

In any case, I know from being on the WED discussion board and Facebook, that most people don't know anything about the Board of Directors or what they do. We will be meeting next month in Chicago for a face-to-face meeting, one of only two we have each year. However, there are lots of conference calls and emails flying back and forth to keep us in touch. The Board is made up of more women than men but we try not to overwhelm them! The members are from all across the United States and are made up of highly professional people--and me. Some have WED and some do not but it has touched the lives of everyone in one way or another. The one thing we have in common is a passion for finding a cure for WED and for helping others until that cure is found.

I think it is important to let you know what the Board is working on and how that will affect you. So after this next board meeting I will blog and facebook information that you might find helpful or just interesting. One thing you should know that shows the dedication of these people--they pay their own expenses to these meetings. Not only that, but they work incredibly hard during these meetings. We come out of them emotionally, mentally and physically drained because there is just so much that needs to be done. Finding a way to do them is hard.

Which brings me to the next item of information; the Foundation's biggest income is from members. Membership is way down. Income overall is way down. We are struggling with the possibility that we might not be able to continue our work unless something happens. That's a huge portion of our meeting this time--we have cut all we can for now so how do we increase income? The bottom line there is this; we need you. We need you to donate when you can, become a member or renew your membership.

The Board makes yearly donations individually along with donating their time and expenses to meetings. I think that proves they understand the situation and are doing their part. They are doing it for you and me and our children and grandchildren. So what are you going to do? There are very few people out there who cannot afford to donate $5 a month IF THEY WANT TO. Yes, there are those in extreme hardship cases but some times that is used as an excuse. Can't do $5 a month? Send in $5 a year. Because if we do not do something soon, there is a possiblity that our source of reliable information, support, brochures, RESEARCH could be gone. Then what will we do?

I am reminding you again that my opinions are just that--my opinions. But they are justified and I stand behind them.

Moon & Stars,

Friday, March 16, 2012

I'm Not saying You're Ignorant, But....

Let's face it--we have all come across some ignorant people during our time with RLS/WED. I'm not talking about the so-called comedians who have no problem making fun of everything and everyone. No, I'm talking about the general public; and sorry to say, about doctors, friends and family.

I came across a website that made fun of (Surprise!) RLS/WED. In it the author said there were two conditions for RLS:
1. You have legs
2. Sometimes they move

Now there is a difference in being ignorant but willing to learn, and being ignorant because you want to prove your point. The later people hear or see something that supports their idea of RLS and no amount of proof otherwise will ever change their little pea-brained minds.

However, here are some come-backs and information you might use or expand on--just in case you come across someone who shows a willingness to learn:

Using Google--there are 24,374,710 results when you type in RLS, Restless Leg Syndrome or Restless Legs Syndrome. That number represents a lot of people looking for answers. If you look up Parkinson's Disease (a well-documented disorder), you get 24,300,000.

Facebook now has 4249 friends and the RLS/WED Foundation Discussion Board has 3018 users. (I was the third person to join the discussion board back in 2004).

There aren't any conclusive tests that prove you have RLS.
There aren't any for the common headache either. So does that mean your headache doesn't exist?

RLS is a made-up disease so the pharamceutical companies can make money.
Sir Thomas Willis first wrote about this in 1672. Sound familiar?

Wherefore to some, when being a Bed
they betake themselves to sleep, presently
in the Arms and Leggs Leapings
and Contractions to the Tendons, and
so great a Restlessness and Tossing of
their Members ensue, that the diseased
are no more able to sleep, than if they
were in a Place of the greatest Torture.

The term Restless Legs Syndrome was first used medically in 1945--long before the pharma companies were producing medications for it.

No one heard of RLS before the pharma companies started advertising it. Now everyone thinks they have it.
Did you ever stop to think that maybe "everyone" didn't have a clue what was wrong with them until they saw the ads? I have heard from so many people who were so grateful to finally have a name to put with their problem.

I wrote in a previous blog about all the medical boards and associations that not only believe RLS exists but are doing research and support programs. If the National Institute of Health recognizes RLS/WED, then your ignorant cousin twice-removed should take heed.

There will always be ignorant people in this world that are hard to convince. Look how long it took to persuade people the earth wasn't flat! By becoming educated and talking to others about RLS/WED, you will find yourself better able to deal with them in a calm, rational way. The worst thing we can do is to rant and rave, insult or overwhelm someone we are trying to educate. That makes us look as bad as the worst of them.

Maybe we need to look into mass production of signs that say, "Beware, RLS Dummy". Then when we come across those who are informationally challenged we can hand it to them and say, "Here's your sign!"

**Postings are of my own opinions and may not reflect the opinions of the RLS Foundation**

Moon & Stars,