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.

What Would It Be?

If you had just one thing to tell the RLS Foundation, what would it be?

Mythbuster #1

**The following information was provided by the RLS Foundation but the comments are purely my own!***

WHY ISN'T THE FOUNDATION DOING SOMETHING? WE WANT NEW MEDICATIONS! WE WANT A CURE!

I hear and read these questions constantly. People plead, discuss, and many times complain on the Foundation discussion board, facebook, other social media and to each other that the Foundation is not doing enough. I understand the misery behind these questions. I, too, would love to know there are other FDA approved medications available. I will celebrate long and loud when a cure is found. However, I will NOT ask why the Foundation isn't doing something. Here's the scoop--

Medical research funding comes mainly from two sources; corporations and the government. In many cases, corporations are usually motivated by profit. The government funds research either through itself or by awarding grants. Researchers look for grants that have a large appeal and that will pay for most (if not all) their salaries. They also need to cover costs for equipment and for people to help with the research. So they go (understandably) where the money is--which is seldom in little-known disorders such as RLS.

In 1997, the Scientific Advisory Board (SAB) of the RLS Foundation was organized. The first research grant was to fund a postdoctoral fellow at the National Health Institute. Since that time, there have been 28 research grants funded for a total of $1.3 million. And, two of the three groups announcing genetic discoveries in 2008 were funded by....guess who? The Restless Legs Syndrome Foundation. That's right, the same foundation often accused of not doing anything.

The RLSF research grant program is advertised via the website and generally attracts 20 letters of intent each December. Those letters are scored by the SAB and the top applicants are invited to submit a full application. The applications are then rigorously reviewed and scored; 1-2 grants are funded each year. Here's the kicker--RESEARCH PROGRAM DOLLARS COME FROM INDIVIDUAL CONTRIBUTIONS!!! These contributions are restricted by the donor for research only. This is the ONLY WAY research is funded, through contributions from all of US.

So, to paraphrase a famous quote--"Don't ask what the Foundation can do for you, ask what YOU can do for THE FOUNDATION!!" Now, do I have enough money to fund a research grant? Of course not. But I might have $5 to send and restrict for research use only. If 1,000 people sent $5 each.....

If you are interested in viewing funded grants, go to the RLS website, click on the Medical and Scientific tab, then on the Research Grant Program tab.

Introduction

In 1989, eight dedicated but sleep-deprived people joined together to form the Restless Legs Syndrome Foundation. Those eight people discussed their "rare" disorder with others and although they did not find relief from the suffering, they did find support in each other.

In 1989, I was more than 15 years into that same sleepless cycle that tormented them. I knew of no one else who suffered like this. Many doctors tried, and failed, to find anything to help me. I was alone.

Thankfully, the Restless Legs Syndrome Foundation was incorporated in 1992. The Foundation began to address the growing need for research and information about this little known condition. Because of their work, a tiny article in a magazine that I read in the waiting room of yet another doctor lead to the first ray of hope I had seen in years.

My story is the same as every other person who has RLS. The details may vary but under it all, we are the same. We suffer with a disorder that is seldom understood by family, friends and doctors. We fight this fight every day and somehow keep going. But because of the work of the RLS Foundation, the Board of Directors, the Medical Advisory Board and the Scientific Advisory Board things are changing. Slowly, but they are changing.

We now have three FDA approved medications for RLS. Because of the hard work of the Foundation and Boards, we are gaining awareness in the medical field. The RLS Foundation is known to be the premier place to find the most reliable information. Support Group leaders and other volunteers work long hours helping others learn how to cope and where to go for information. We have a discussion board on the RLS website and we are now on facebook.

Which brings us here. This blogsite has not seen much use in the past couple of years but I would like to try it again. Maybe it's just me, but it seems there is a need for a place of conversation that is a union of the discussion board, the website and facebook. There are several misconceptions about the Foundation and the various Boards associated with it that should be addressed. Hopefully we can have some fun too. I am new to blogging but not to the Foundation. I became a member in 1992, a support group leader a couple of years later, was on the Support Group Advisory Board and am now on the Board of Directors.

This is a long post but I wanted you to know what was happening. While this is a Foundation blog, it will still come with some of my personal opinions. I hope you will come back, read, absorb and respond.

Moon and stars,
Kathy

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