2013 Predictions from Madame Ruby

It's that time of year when all the rag tag magazines and papers put out their predictions for the new year.  I always wonder why they don't have an issue at the end of the year telling which of the predictions came true.  Probably because there wouldn't be much, if anything, in it!  The big prediction this year was the end of the world earlier in December.  I am certainly glad that one didn't come true; I'm not fond of zombies.

However, there are some predictions that have a much greater chance of coming true--at least in the WED/RLS world.  Madame Ruby MoonandStars has been gracious enough to allow me to put them in this blog.

According to Madame Ruby, here are some predictions for 2013:

1.  A new wallet-sized WED/RLS treatment card will become available to help in hospitilization or emergency situations.
2.  The Quality Care Institue will continue to be developed.
3.  The Foundation will continue to support research on WED/RLS.
4.  There will be a World RLS Awareness Day in September to focus on disease awareness and education.
5.  The WED/RLS Facebook page will continue to grow and be a good source of support.
6.  Product reviews will be available in NightWalker magazine.  These will be based on use by actual WED/RLS patients with pros and cons of product but no endorsement one way or the other.
7.  The WED/RLS Foundation and Board of Directors will continue to do the best they can to increase awareness, improve treatments, and through research, find a cure for WED/RLS.
8.  It will be discovered that cows hold the answer to world peace.

Okay, so the last one is pretty far-fetched; Madame Ruby was starting to get tired around then.  Apparently, making predictions is a strenuous activity.  However, I think she is right on the others and of course, time will tell. In any case, I wish for each of you a better year in 2013 than you have ever had.  Happy New Year!

Kathy

Where We Are

In 1683, Sir Thomas Willis wrote:

“Wherefore to some, when being a-bed

they betake themselves to sleep, presently

in the arms and legs, leapings and

contractions on the tendons, and so great

a restlessness and tossings of other members

ensue, that the diseased are no more able to

sleep, than if they were in a place of the

greatest torture.”

The Restless Legs Syndrome Foundation began in 1989 when eight people with restless legs syndrome (RLS) began sharing letters and discussing their “rare” condition. In 1992, the Foundation was incorporated as a nonprofit organization to address the growing need for research and information about this unknown condition. In the beginning, the Board of Directors would gather around the kitchen table of Executive Director Pickett Guthrie  to discuss their experiences with the disease and what courses of action would provide the most relief for persons with RLS. Their goals were simple and yet groundbreaking: increase awareness, improve treatments, and, through research, find a cure.

Today those goals have taken on a life of their own.  Our understanding of RLS has also grown. We now know that the condition is not rare at all. In fact, recent research suggests that up to 10 percent of the general population has this neurologic condition. It is perhaps the most common condition you have never heard of, affecting more people than even type 2 diabetes.

We now have medications specifically for helping with RLS symptoms and we know of many others that can be used.  We know that RLS can affect other body parts, not just the legs, and we know it can be accompanied by pain.  We know that children can have RLS at almost any age and that ADD and ADHD often go hand in hand with RLS.  We know it can be inherited (primary) or can be caused by other health problems (secondary).  We know so much more than we did in 1989 but there is so much more we have no answers for.

September is RLS Awareness Month.  For many, that isn't something they think much about.  We don't have cool commercials on television or slick advertising in magazines or newspapers.  Awareness is education--for people who suffer with this disorder, for those who have never heard of it and everyone in-between.  We know that RLS is ridiculed and passed off as either imaginary or not very serious.  Awareness can help with that.

Awareness will bring in researchers.  If they don't know how serious RLS is for us as sufferers, they won't care to do research.  Let's face it, researchers do what they do not only to find cures or better medications or just more information on a disorder; they do it to make a name for themselves.  Research takes money too.  Awareness can help bring in donations to attract these researchers.

Awareness is something we should all be working towards.  It doesn't need to take money to do.  Write a letter to the editor of your paper.  Become educated so you can talk to others.  Ask the Foundation for brochures to place in your doctor's office.  Support others on Facebook or the discussion board.  Or donate to the Foundation and specify where you want that donation to go.

I placed a challenge on Facebook.  Do something to promote awareness this month, something you would not normally do or have not done in the past.  I gave you some suggestions above.  If I have 10 people who promote RLS Awareness Week and can give me some proof, I will make a donation in your honor to the Foundation.  That's a win-win situation!

Be aware of Awareness Month.  Let's work together to take this all to a new level.

Moon and Stars,
Kathy

Just for Fun

Sometimes life gets really complicated.  Not only do we deal with everyday struggles, but we have this weird disorder to contend with.  I find myself looking at life through stormy glasses and the only thing that will pick me up is to find something to laugh about.

Thankfully, I have several friends that have the same type of humor as I do.  I was recently with one of these friends at our state fair and happened to notice a very strangely dressed individual.  All I had to do was look at my friend and we both burst into laughter.  Not so much because of the weird person, but that we had both noticed that the other had noticed.  Does that make sense?  Neither does most of the things we find funny.

Anyway!  Soon we will be changing our name from RLS (Restless Legs Syndrome) to WED (Willis-Ekbom Disease).  That is a serious move and it led me to think about other acronyms that could be used within the WED context. And that's as far as the seriousness went!

So here is a listing of some acronyms I came up with.  See what you think and come up with some others.  Let's have some fun with this but keep it clean!

ACE--advocates, concerned, educated  (that's us!)
BAD--barely acceptable doctors
DUH--deliberately uninformed humans
DUMB--deliberately uninformed media buffoons
CREEP--crazy, repulsive, erroneous, entertainment personalities
RANSOME--really annoying nonsensical snake oil medicines

What do you think?  Silly but true?  Did you laugh?  I hope so.  Laughter can help us survive just a little longer.  Pass it on!

Moon and Stars,
Kathy

Just What is Being Done?

A few days ago someone posted on Facebook that they were "amazed" by people trying to get money from those who suffer.  I first thought that they were talking about the "snake oil" people out there who promise a cure for RLS/WED.  Instead, this person was upset with the Foundation about several things that the Foundation has no control over.  Frustration with uneducated doctors, medications that are expensive and don't work, unnecessary testing is completely understandable but certainly not the fault of the Foundation. 

Some people seem to think that the Foundation staff and Board of Directors should have answers for every question and are personally responsible for every facet of RLS/WED--education, awareness, areas of research, new medications (or lack of them), doctors who don't care, and the list goes on and on.  All of this should be done, of course, without any expenses being incurred or asking for donations.

I realize that we all need to vent from time to time and Facebook is one area to do that.  I have done my share of ranting and will probably do more in the future.  The problem comes when a person or organization is attacked and nothing can be said that will help the attacker feel any better.  No one comes out any the better after something like this. The pain this person (and others) feel is tremendous or they wouldn't have posted to begin with.  Personally, I am still upset that this person feels so alone. 

But it did serve to point out another problem.  No one came to the defense of the Foundation, except the Foundation itself.  That leads to the question--is this what others believe?  Or is there a misconception about the Foundation?  So here is your opportunity to ask questions or post comments.  I truly want to know what your perception is of the Foundation.  I will answer questions to the best of my ability, as well as the Foundation's.

If you read this but choose not to respond, that is your right.  However, you are missing an opportunity not only to educate yourself, but to help us see where problems lie that can be corrected.  Helping us helps you!

Moon & Stars,
Kathy

An RLS Hero

Recently the RLS Foundation sent out some information about a fundraising group called Planet Green.  This group recycles ink cartridges, old cell phones and other small electronics.  A carton of 20 items usually results in about $50 being returned to the organization.  It doesn't take long to collect 20 of these items from work, school, church, family and friends.  And a $50 check going to the RLS Foundation is great! 

Linda contacted the RLS Foundation about participating in this program.  When asked why, this is what she had to say:

I feel since the organization does so much to inform & educate the public and medical profession and sponsor research, all the better to give you credit to further this work.  It is easy to do, since I have always recycled the cartridges anyway..I recalled a mention in either an online post or in one of the newsletter that you were requesting these quite sometime ago.  I periodically print out quite a few photos, and print things occasionally as needed, so glad you can get some credit for them.  I know any donation is put to good use. 

I was first medically diagnosed with severe RLS in 1991 by symptoms and a sleep study to check why I was so tired all the time.  I used the organization information, online community and local meetings to learn more about RLS and PLMD, and how common they are. I attended a very helpful regional conference sponsored by the organization many years ago also; think it was in Long Beach or possibly San Diego.

I realized it was inherited from my Dad's side, and some of my sons and grandchildren also have RLS. I was a dental hygienist for44 years and able to refer patients to start with your website to become informed and know they were not crazy or alone when they mentioned, or I witnessed, their symptoms while in the dental chair. I have found friends and acquaintances over the years withRLS and discussed the disease with them and refer them to rls.org to learn more and seek treatment.

 I am retired and on a very tight budget, and unable to contribute monetarily other than my basic membership, but this donation is one small way I can easily help.

Linda would rather not have her last name given.  She didn't do this for the glory, as you can tell by her story--she did it because it was a way to help the Foundation.  Many people are in the same financial boat as Linda but she just found another way to help.  It's something all of us could do and it would not only help the RLS Foundation but help our planet too.  For more information about this program, call the Foundation at 507-287-6465 or email them at rlsfoundation@rls.org.  Will you be our next RLS Hero?!!

Moon and Stars,
Kathy

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,
Kathy

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,
Kathy

You Don't Believe Me?

How many times have each of us faced people (and yes, doctors) who say that Restless Legs Syndrome doesn't exist? It's just something either the pharmaceutical companies made up to make money, or that we have made up to gain sympathy? Well check this out; RLS symptoms have been around since, oh, about 1672, when Sir Thomas Willis gave this description:

Instructions for curing the Watching evil:
.......Wherefore to some, when being in bed they betake themselves to sleep, presently in the arms and legs. Leaping and contractions of the tendons and so great a restlessness and tossing of the members ensure, that the diseased are no more able to sleep, than if they were in the place of the greatest torture...

Sound familiar? 1672 was just a little bit before modern-day pharmacy companies. Besides, most of us have lived with this demon since way before the current medications were even thought about.

But just in case people still doubt you, here is a listing of others who believe in RLS/WED:

Mayo Clinic
National Institute of Health
National Institute of Neurological Disorders and Stroke
National Center on Sleep Research
American Heart Association
National Stroke Association
Vascular Disease Association
National Sleep Foundation

There are some big guns there; credible organizations that realize the truth--RLS is serious. It affects not only our sleep but our overall health. It is validating to know that we ARE being taken seriously, at least in some major areas. Of course, there will always be intellectually-challenged people (i.e. really dumb) who won't believe that RLS exists no matter what proof they are given. But arm yourself with this list the next time someone from the medical profession brushes you off and see if it makes a difference. It certainly can't hurt and it just might help!

Desperation

If you have been on the RLS Facebook site much at all, you will see so many (too many) people who are desperate for relief. They can't find a medication that works, or that works for long. They can't find a doctor who will work with them. The desperation is clear in what they have to say and for most of us reading those posts, we understand exactly what they are going through.

If I had a magic wand, all these problems would disappear in a sprinkling of fairy dust. Alas, I cannot help you that way; but I would like to pass on an idea that might help.

Several times I have asked people to keep a "sleep" diary. What did they eat, drink, or do that day and how did they sleep that night? The purpose was to find reasons that might trigger a bad night. Making lifestyle changes is the first step in gaining control over RLS/WED.

Now, here's the usual scenario when you visit your doctor. You tell them you sleep only a few hours (if that) a night. You explain your symptoms, remind them of what you have and how bad you feel the next day. The doctor makes a few polite noises, writes something in your file and little if anything gets done. Even the best doctors seldom understand how bad RLS/WED is.

So here is what I propose: keep a "This Is My Life" journal to take with you to your next doctor visit. Here is a minimum of what it should include--
1) A list of every doctor you have seen for RLS/WED and related items (with specific dates if possible).
2) What each doctor suggested or prescribed.
3) What worked and what didn't.
4) A list of every medication tried, dosage, how long you used and if it was helpful or not.
5) A list of every over-the-counter, herbal or natural treatment tried and how it worked.
6) A list of every test or treatment done and the results.
And the most important items of all--
7) A true listing every night of when you went to bed, when you got up, how long you were up, what you did, when you tried going back to bed, etc.
8) How you functioned the next day--how was your life impacted socially, at work, physically, in every way possible.

I'm sure you can think of other items to add to this. The point is that a doctor will take you much more seriously if you have taken the time to keep a log like this. It shows that you are not exaggerating the problem and just what medications, treatments or tests have been done. It helps clarify the problem for him and a copy should be kept in your file with every doctor you see.

However, it is very important to keep this log factual and emotion-free. This is for his study and information. The time for emotion is face-to-face when talking about how this affects your quality of life, AFTER he has looked through your log.

Is this a guarantee that your doctor will pay attention and take you seriously? No. But it could make a big difference in helping you find relief. That's the bottom line here, isn't it? If nothing else, it will give you something concrete and beneficial to do when you face those sleepless nights.

Keep reading and posting comments. Just knowing that we are not alone is a huge help in this fight.

Moon and Stars,
Kathy