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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