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

Blessings

No matter your religious beliefs and holiday practices (or lack thereof); this seems to be a season of reflection for many people. 2011 is drawing to a close and as with most years, it has been a mixed bag of accomplishments and memories. I feel that I have accomplished a lot, both personally and with the Foundation but there is still so much left undone.

We aren’t where we want to be in the matter of RLS/WED. There still is a huge need for better medications, more understanding doctors and most importantly of all—there still is no cure. We often focus on the negative side when it comes to this disorder and that is completely understandable. Even if we go through a period where our RLS/WED is mostly under control and we are getting some rest, we know that it is unlikely to stay that way.

However, this blog is going to be about blessings. “Blessings”, according to Webster are “things conducive to happiness or welfare.” So in the case of RLS/WED, here are a few of my blessings to share with you.

1. I know what I have and how to deal with it. It wasn’t that long ago that I had no idea what was wrong with me. I was told all kinds of things—none of which were right. I was made to feel like I was a hypochondriac, looking for sympathy or just plain crazy. Now I know what I have. I know the medications that will work (at least most of the time) and which ones won’t. I know what things to avoid to prevent an attack. Yes, there are still times when nothing works but it sure beats the times when I HAD nothing.
2. There is on-line, reliable information. When RLS started running my life, there was no computer access for the average person. If I had a question or needed information, I had to rely on my doctor-and we all know how helpful that was. Now, within seconds I can look up practically anything I need to. The problem is to make sure it is reliable information and the solution is to know your sources.
3. There are medications and treatments available to me. They may not always work and some don’t work at all but I do have options. Supplementing my calcium (which was my early doctor’s only suggestion) did not work, since that wasn’t the problem in the first place. And while we wait anxiously and impatiently for new medications, at least now there is research being done on RLS. We wish it would go faster but just a few short years ago, there was next to no interest in research or in us as patients.
4. I am not alone. This is the biggest blessing of them all. There were so many nights of walking the floor, feeling like I was the only person awake in the world. And why was I awake? No one could tell me. Now, I am in contact daily with people who understand exactly what I am going through. I have a network of people I can call on for support or just to listen to me vent. I have friends from around the world who care about me. I have some who have become heart-family. We are connected. Through exchanging bits and pieces at meetings or on the discussion board, we became friends and now we are family.

I am blessed. So are you. A new friend on the RLS Facebook site recently suggested that we keep a list. “Think of something good about the day and write it down. Keep writing down the good things and keep the list where you can see it. Read it as often as you can and every time you do, be thankful for these things. Keep your mind on what is good.” Thanks, Penny. Another blessing to be counted!

Merry Christmas, Happy Holidays or Have a Great Day. To each his blessed own.

Moon and Stars,
Kathy

RLS Research

The Restless Legs Syndrome Foundation is a non-profit organization providing the latest information about RLS. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals.

Many understand that the above goals are the cornerstone of the RLS Foundation. Many and more have benefited from what has been achieved so far. There is increased awareness, even if it isn't always positive. The FDA has now approved three medications for RLS/WED that weren't there just a few years ago. Research is ongoing for better and more medications. Even better, research is happening that might someday lead to a cure.

Facebook has been full of posts lately that have been negative about current research that links RLS/WED to high blood pressure. "We already knew that." "It was wasted money." "Why didn't they research something more important?" Good comments and valid questions. Who knows what the reasoning was behind granting the funds for the research? I've seen many cases of research money spent that seemed to be redundant or just plain silly. Maybe there was more to this than we understand. Maybe not.

Such is not the case for the RLS/WED Foundation. Since 1997 and the inception of the grant program, the RLS Foundation has honored promising scientists whose work addresses the goals of the Foundation. The RLS Foundation encourages grant applications for basic and clinical research studies of restless legs syndrome (RLS). Basic science leading to a better understanding of RLS, innovative approaches, interdisciplinary studies, and support of promising postdoctoral candidates is given funding priority. Since 1997, the RLS Foundation has funded 38 research grants for a total of $1.4 million.

These grants have been for research in the areas of genetics, iron regulation, neurophysiology (the nervous system), epidemiology (a branch of medical science that deals with the incidence, distribution, and control of disease in a population), and dopamine.

The Foundation can and does choose which research grants sound the most promising. Since RLS research money is very limited, these are all small grants used to stimulate interest and provide data for larger grants at either the National Institute of Health or the Canada Institute of Health Research. So far, these grant recipients have published 23 papers and three book chapters with an additional six manuscripts and two book chapters in process.

Unless you are an extremely rich philanthropist, most of us cannot fund research. However, your donation of any amount to the RLS/WED Foundation can be earmarked by you to go only to research. So if you are unhappy about what you read online, make a donation to the Foundation. Every dollar spent on research brings us that much closer to a cure.

What Will You Be For Halloween?

October. Fall. Colored leaves falling to the ground. Pumpkins, cider, harvest moon, hay rides...it all adds up to my favorite time of year. I love the cool days and cooler nights. I love to snuggle under blankets at night; I love to sleep and sleep and sleep. Wait a minute; something in this just is not tracking. (Fall, leaves, pumpkins, snuggle, sleep...) That's it! Sleep! I never get enough sleep!

Despite the lack of sleep, I do love this time of year. There's just a different feeling in the air that doesn't come from cooler weather or falling leaves. For me, it all stems from my childhood. When I was growing up, October was full of excitement all month long. Halloween costumes were in the making--no purchased masks for us! We drew pictures of costumes, begged and borrowed clothes, raided Mom's makeup bag and Dad's shoe closet. At various times I was a princess, a bum, a ghost and a fairy. The Halloween costume that stands out in my mind the most though was Blackbeard, the Pirate.

Dad shredded the bottoms of a pair of my jeans (much to my Mom's dismay!) and made me a really cool pirate sword out of cardboard and aluminum foil. I had an eye patch and a bandana around my head but the best part was the black makeup Dad used to make it look like I had a beard. Which was also the part that made it all so memorable. It didn't wash off. I don't know what he used but I went around for days with blonde pigtails and a five o'clock shadow.

This isn't my normal blog about RLS; I just wasn't in the mood. Halloween is almost here and hopefully you can feel the same shivering excitement in the world around you as I do. Life is too short to let RLS control everything, all the time. Have fun! Since we're up most of the night anyway, go trick-or-treating! Tomorrow we may be sleep-walking zombies but if we are, let's just it make part of our Halloween costume.

Moon and Stars,
Kathy

But What About....?

I talk to a lot of people about RLS/WED; at support group meetings, discussion boards, blogs and just people I meet. It's amazing how much MIS-information there is out there about RLS/WED--as my friend says, "It fairly boggles the mind!" In any search for information, please make sure you have reputable sources.

But lots of "information" I hear is centered around the Foundation itself or the Board of Directors. Someone once told me that they would not donate to the Foundation because of all the millions of dollars we accept from pharamceutical companies. If that's whats holding you back then read this; many years ago the decision was made not to accept money from these companies, for very good reasons. That holds true today. The only money accepted from pharma companies are an occasional grant for hosting patient meetings.

So here's your chance. Ask those questions and I will answer them the to the best of my ability. Have a comment about how something is done? Let me know. Have constructive suggestions on what needs to be done? Send them on. We're all in this together, even when it feels like you are the only person in the world with RLS/WED. So start thinking: But what about...?

Moon and Stars
Kathy

Tell Me About It

September is RLS Awareness month. September 23 is National RLS Awareness Day. Many of us who suffer with this terrible disorder will be holding special support group meetings, contacting the mayor to inact RLS Awareness Day, sending letters to the editor of the local newspaper or putting information out wherever possible. So who is? What are you doing to promote Awareness Week/Day? Tell me about it.

There are people out there who work tirelessly as support group leaders; not an easy job! Some people watch the internet and respond quickly and loudly to negative or misleading information. Many support each other on facebook or the RLS Discussion board. Some people are very generous with donations and some send what they can. What do you do in the fight against RLS? Tell me about it.

Many people are barely hanging on and getting through the day (and night) takes everything they have. Some people volunteer for clinical trials that just might help find new medications or get us closer to a cure. As sufferers, we come from all spectrums and walks of life. How do you get along? Tell me about it.

There are also many people who suffer with RLS who do nothing. The people I am talking about could do something but choose not to. They are often quick to complain about the lack of medications, qualified doctors, not enough research, education, support...but do nothing to help these come about. I could be wrong. If I am, tell me about it.

RLS Awareness month comes every year. Every year is another opportunity to bring awareness to people who suffer but maybe don't know what they suffer with. It brings an opportunity to help educate and support all of us; sufferers, doctors, family and friends, the media and the world. So why do we wait for someone else to do something? Who is ultimately responsible for our well-being? There are people out there who truly cannot do anything but hang on. I do what I can in this fight not only for me and my family but for them. If this blog made you uncomfortable, then look again at your situation and see what you can do to help. If you have comments about what I wrote, tell me about it.

**The statements and opinions here are solely my own and I take full responsibilty for them**

Moon and Stars
Kathy

Really Good News

I just have to take this opportunity to commend the WED/RLS Foundation for the tremendous work they do on our behalf. This is truly good news to pass along!! They have been working with the Minnesota Evidence-Based Practice Center (EPC) which is a part of the federal Agency for Healthcare Research and Quality (AHRQ) on a new report for treatment of WED/RLS.

It seems that someone has finally seen the need for treatment information for WED/RLS. The AHRQ (www.ahrq.gov) is that someone. As patients, we have long known the need for treatment information. If we don't have the best possible information, how can we make a decision on what is best for us? The AHRQ strives to provide the best and most objective information for us as patients and for our health-care providers. Through this report, we will have better information on what treatments might work best for us.

We all know that WED/RLS is capricious. What works for one may not work for another. That is one major reason that treatment options are so hard to decide on. But by coordinating all available information, we have a better chance of getting the help we need. The AHRQ looks at things such as clinical trials and studies, effectiveness of treatments, any harm that might come from treatments, and the characteristics of patients (such as age, gender, race and disease severity).

The AHRQ is also looking at how treatments for WED/RLS might also improve sleep quality and quality of life. AT LAST!! How long have we agonized over the fact that we not only do we not sleep at night, but that our entire quality of life is affected?

We seldom see just all the areas that the WED/RLS Foundation is involved in. Many times they have been accused of not doing anything or certainly not enough for us as patients. This proves that they work diligently on our behalf, all the time. It may take time for all this to come together but the Foundation will stay with it until the end. In the meantime, they will not stop looking for more ways to improve treatments, quality of life and eventually find a cure.

Please check out the AHRQ website (www.arhq.gov) to see what this federal organization is all about. And take the time to thank the Foundation. They deserve it.

Moon and Stars,
Kathy

My Wish List

If you had two minutes to tell someone anything you wanted to about having RLS/WED, who would you tell and what would it be? Remember, you only have two minutes.

Who, Me?

I'm on facebook quite a bit, reading the posts people write about RLS/WED. I answer when I think I might be able to help. I also check out the discussion board on the RLS/WED Foundation website, as often as I can. I get phone calls and emails from people who suffer with this disease. All are looking for help; medications don't work, doctors can't be found who understand, family and friends just don't get it. I wish I had the magic answer for everyone because I really do understand how they feel. I've had RLS/WED most of my life and although it is mostly under control, there are time like tonight when it is truly miserable.

Most of the people I "talk" to are in the early stages of finding out what they have and trying to find relief. Others have had this for years and are barely hanging on. Still others are fighting back in whatever ways they have. The first two groups can only think about survival at this point. The last group, while having just as many problems, are actively taking a stand in the RLS/WED arena.

I am not condemning anyone here; each person has to do whatever it takes to get through the day (or night). What I am doing is pointing out that the people who are active in this fight seem to handle it all better. They seem to have more optimism, more spirit, more....SOMETHING! Maybe its just that they feel they have more control over a disease that wants to take over our lives.

Before I get bombarded with replies from the first two groups (that would actually be a good thing!), let me explain what I see. People who are actively involved in working towards better lives and a cure do so in many ways. Many donate frequently to the Foundation so that the Foundation can continue the work we cannot do ourselves. Many are support group leaders and advocates. Many watch the media and write responses to the mainline idiots out there, trying to set the record straight. We have patient representatives meeting with the FDA to let them know how important new medications are. We have people who try to help others on facebook and the discussion board. But way too many wait for others to do the work and complain when results don't come as fast as needed.

You may not be able financially to donate much. But if you really want to, you could find $5 occasionally to send. You can write letters to the editors of your local newspaper or ask the Foundation for a general info letter that you can send. You can support others on facebook or the discussion board. But the most important thing you can do is educate yourself about the disease that is running your life. Make sure your information is correct and up-to-date at all times. Pass that information on to others when you can, especially if that person is your doctor, a friend or family member. Learning all you can about RLS/WED is the most important thing you can do and it doesn't cost a thing. Except maybe some time. At 2:00 a.m. when you are walking the floor, read a book about RLS or go on-line. If you need to walk a few minutes between pages or sites, go ahead. If you get just one tiny bit of information during that time, then RLS didn't steal another night away from you. Will you still have RLS/WED? Of course. Will you be gaining some control over it? You bet and that helps--knowing that you are doing something.

Moon and stars,
Kathy

Independence Day

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are Life, Liberty, and the pursuit of Happiness."

And so, for those of us who live in the US, these words from the Declaration of Independence are the cornerstone for our country. It is an important part of our history and of our daily lives. It has been used, misused and abused but it still stands strong.

Monday is July 4th, the day we celebrate our nation's independence. It is a day of picnics, parades and fireworks. Despite the reason behind this day, how often do we take the time to think about why we are really celebrating? I know I seldom do. I take for granted all the benefits, priviledges, and gifts I have that others fought so very hard for.

Rights--our forefathers wrote that we have certain rights, not gifts, not choices or chances but RIGHTS. These rights are for Life, Liberty and the pursuit of Happiness. Notice that they started each with a capital letter; just to make sure it was understood that these rights were important. We have a right to life, a right to liberty and a right to PURSUE happiness. It does not say we have a right to happiness, just the right to pursue it.

I wonder if any of the writers or signers of the Declaration of Independence had RLS? Don't laugh; if 7% of the population has it, then it could be that one of them was a fellow sufferer. I'm sure that even if one or more had it that they were not thinking about it when they wrote this document. But they thought the pursuit of happiness was a right; pretty important suff. So in our pursuit of Happiness, why do we often feel guilty, embarrassed, or whiney when we ask for help with RLS? Many things can and do make us happy. Some we have control of and some we don't. But if each of us could find a doctor who would work with us, medication that would alleviate our suffering and someday soon find a cure--wouldn't we be happy? Wouldn't we be beyond happy?

The pursuit of happiness does not mean we can run roughshod over others to get what we need (or think we need). It doesn't mean we can be nasty, rude, hasty or hurt others to get that happiness. But it does mean that we can go forward in insisting on quality care, new and better medications and a cure without feeling that we don't "deserve" those things. We don't have cancer, we don't have a diseased heart...but we do have a disorder that makes our lives very, very unhappy. We have the right to pursue a good quality of life, a happy life.

I am fortunate that the Foundation, Board of Directors, Medical and Scientific Advisory Boards for RLS are pursuing my rights. That is what they do--fight for our rights to happiness in a world that seldom even notices that we exist. I thank them from the bottom of my heart and hope that you too realize the work they do on our behalf.

The pursuit of Happiness. I hope our independence day comes soon, no matter where we live.

Moon and stars,
Kathy

A Rose By Any Other Name

The new name change has been announced (yes, the second one) and once again there has been an outcry from people who don't like it. I won't go into all the reasons behind the change, you can find that information in NightWalkers magazine or on the website at www.rls.org. I also want to say that I do understand the concerns about the name change, I really do. They were the same concerns I had. After studying the situation I did change my mind but I am still aware that they are valid concerns.

The one concern that seems to be at the top is this: Restless Legs Syndrome tells others exactly what you have. It describes the problem in the name. If we change the name, no one will know what we have. (Those were my thoughts too).

While Restless Legs Syndrome explains what we have, it also opens the door for all sorts of jokes, gags and misunderstandings. The media and so-called comedians have a field day with it. The medical community takes it lightly for the most part. If you tell them about the other symptoms you have that don't fit with restless legs, then you have another set of problems getting help.

It's all a matter of education. We have done a good job of getting RLS recognized and will do an even better job of getting Willis-Ekbom disease (WED) recognized. I am including a list of diseases/disorders that in the past had descriptive names--everyone knew what you had by purely by the name. These also have the names they are currently known by. I'm sure they were known by both names for quite awhile but I doubt that anyone even remembers the old names.

Bad Blood---Syphillis
Ague---Malaria
Bladder in Throat---Diptheria
Brain Fever--Meningitis
Consumption---Tuberculosis
Canine Madness--Rabies
Cramp Colic---Appendicitis
Dropsy of the Brain--Encephalitis
Glandular Fever--Mononucleosis
Infantile Paralysis--Polio
Quinsy---Tonsillitis
Screws---Rheumatism
Winter Fever---Pneumonia

These are just a few but it makes my point; educating your family, friends, doctors, pharmacists, etc., will speed the process.

If you just cannot bring yourself to call this by the new name, then don't. No one is going to send the Name Change Police to your door. Some people just don't like change. Some people are upset because they didn't get to vote on the change.

As I said, this will take time. I have said it before and will continue saying it--the new name change is a good thing. However, you must make up your own mind!

Moon and Stars,
Kathy

Memories

Memorial Day is traditionally a time of remembering our veterans and loved ones that have passed on. For some reason, this Memorial Day has me remembering all the wonderful people I have met since I started looking for more information about RLS. The first National Patient meeting was in St. Louis and it was thrilling. For the first time I was surrounded by people who knew exactly what I was going through. And there were speakers, doctors and researchers who not only believed we had something wrong but were treating and studying this strange disorder! I had read enough to know that I was not alone; but to find people from across the United States and Canada that suffered like me, had more coping strategies, and even more information was just incredible.

At the Patient Meeting in California I met so many people who became so important to me. There were 2-3 ladies from Canada and I was so impressed that they had come all that way, not only to learn more but to add so much to the discussions. The people on the RLS Board of Directors were so outgoing and supportive. I volunteered for several positions--the most important one at that time was on the Support Group Advisory Board. One of the ladies from Canada had also volunteered for that board. There is a whole story about how we became friends, not only with each other but with a wonderful lady from Virginia and a very talented man from Seattle. If you ever see me somewhere and want to hear that story, just let me know.

I started hanging out on the RLS Discussion Board where I found some interesting, knowledgeable, caring people. And I was fortunate enough to get to meet several of them at later Patient or Regional Meetings. A certain lady I met became my Yellow Rose of Texas. These people are from all over the US; Texas, Arizona, Indiana, Florida, Illinois... There are a few from other countries that I have never met but hope to one day.

Each of these people are incredibly talented too. In my experience, people with RLS seem to be more artistic and creative. My friends are painters, photographers, writers, jewelry and stained glass makers, quilters and the list goes on and on.

These people are still an important part of my life. They support me when I need shoring up, they call me when I need an ear, they email, facebook, send messages through the moon and hugs by fireflies. There has never been a time when they have not been there for me. Despite the awfullness of this disorder, I am so very thankful that I have had the opportunity to meet and become friends with such wonderful people.

I encourage each of you to look for the silver lining of this disorder. Look for the chance to meet others who truly understand what you live with daily, who might become a life-long friend or need the support you have to give. Be kind to one another--some of the best friendships come out of arguments where each is willing to listen to the other.

As for me, I'm going to sit on my porch this weekend, talk to the moon, watch the fireflies and think about my friends. I am blessed.