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