Restless Legs Syndrome Foundation Blog

Father’s Day, like Mother’s Day, is a day that is dedicated to someone important in our lives – our dads. I think that our parents are the most influential teachers we have, and my dad is no exception. For example, from an early age, my dad has taught me things about using computers, how to hook up video game systems to the TV, and various other kinds of technology. Although I am no genius when it comes to technological things, like developing software, I know how to work with various programs, as well as how to generally troubleshoot problems (although there are still plenty of times when I ask him for help with whatever technological problems I may be facing).

When my RLS/WED first became a problem for me, my dad, like my mom, was concerned with what I was dealing with. One of the doctors I went to said that I may have something called Restless Leg Syndrome (RLS/WED), but that he didn’t now enough about it to make a diagnosis. Through extensive research on the Internet, my mom found the Restless Leg Syndrome Foundation. My dad selflessly stayed home to take care of my sister and I in order to let my mom go the national meeting in order to learn more about WED/RLS. This ultimately helped my parents find a doctor who could provide the care that I needed at the time.

My dad still cares about whatever endeavor I decide to undertake. Whether it is going to a concert or being my chauffer for the day, my dad does so much for me. I really appreciate all that my dad has done for me. Thanks for being the best dad in the world!

The WED Foundation has established a program to improve treatment for people who have Willis-Ekbom disease (restless legs syndrome, or WED/RLS) through a network of WED/RLS Quality Care Centers. Centers will be recognized as leaders in the field, serve as liaisons to primary care providers and support groups, and be listed in Foundation materials so that patients and providers can use their services. 

View current Quality Care Centers for WED/RLS by clicking here.

• Recognition of a center or individual provider as a specialist in treating WED/RLS patients with a range of complexity and comorbidities 
• Availability of Quality Care Centers as information and referral resources for primary care providers when treating patients with WED/RLS 
• Listing of Quality Care Centers in Foundation materials so that people who have moderate to severe symptoms can find the care they need 
• Better understanding of the patient and family role in quality care improvement through educational offerings and print materials 
• Over time, global improvements in care through quality improvement projects conducted through the Quality Care Centers 

The Foundation is actively contacting providers about the opportunity to become certified as Quality Care Centers. Certification is based on criteria developed by the WED Foundation Medical Advisory Board and requires a high level of expertise and minimum number of WED/RLS patients treated.

This program reflects a fundamental belief that every person deserves effective treatment, says WED Foundation Executive Director Karla Dzienkowski. “We frequently hear from people who are suffering from lack of adequate treatment. They may have a provider who doesn’t understand their disease, or they may be taking medications but still experience breakthrough symptoms. Nobody with WED/RLS should have such a reduced quality of life. This disease can be managed, and we aim to help providers fulfill this expectation.”

Persistent challenges
Every year, the Foundation hears from thousands of men, women and parents who need help finding a knowledgeable provider, understanding their disease, or finding answers when their medications lose effectiveness.

• Delayed diagnosis: In 2013, the medical community is still unprepared to quickly and accurately diagnose WED/RLS. Only one half of respondents in a 2012 survey of WED Foundation members reported receiving a correct diagnosis at their first doctor visit. 
• Ineffective treatment: Treatment options (including both labeled and off-label drugs) do not provide consistent relief of symptoms. In the 2012 member survey, respondents reported using a total of 19 different medications in six different classes, illustrating just how difficult it is to treat the disease. 

Through education, sharing of best practices and quality improvement projects, the Quality Care Center program will help the WED/RLS community overcome these challenges.

Supporting high-quality care: what you can do
As a member of the WED/RLS community, your support is needed. In the upcoming year, the Foundation will ask for your help through an annual gift designated for the program, in addition your current contribution. You will receive a special communication in the coming months that outlines this opportunity and how to plan for it. Please consider budgeting a gift according to your means. Your pledge, in any amount, will be put to good work toward improving care for people living with WED/RLS.

Make a donation to the Foundation now by clicking here.

Changing the game for WED/RLS is a long-term process, says Dzienkowski. “This won’t happen overnight. Together as a community, we can make this change. Everything starts somewhere. This is the basement, the foundation we’re building. We’re all looking up with our hard hats on.”

Maybe some of you will feel the same passion to make a difference that I did so I've put together some steps that helped me to have successful Garden Parties.

First you must be passionate, determined and confident that you can make a difference.

WHY: To support the mission set out by the Willis-Ekbom Foundation; To increase awareness, improve treatments and to encourage research to find a cure.

WHAT: A Garden Party

WHERE: In your yard.

WHO: All your women friends, their friends and neighbors. Anyone you meet that you think might enjoy the event. Keep in mind the numbers you can accommodate. Invite more so you get the numbers you want. We invite 100 and get about 60.

WHEN: Choose a Sunday in the summer. I have it from 2pm – 4 pm.

DETAILS:

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Donna's Garden Party

Why: WED/RLS is affecting a great number of our population. It is only now being recognized as a serious disease. There are still many, many people who may have it and not know it, many physicians have no knowledge of it, people make fun of it. Your children and grandchildren may inherit it. People entering their senior years will suffer more when they become less mobile. Without funds for research we cannot expect to relieve any of the suffering caused by this debilitating disease.

What: Entertainment; Having a Garden Party is one way of raising funds while offering a fun experience to all who attend. Here are some of the ways we have made ours successful. Find a person who is willing to set up music and a mike for you. We had a local musician bring her portable piano and she sang and played for us. The first year she sang English tunes, the next year was of a Hawaiian theme, we gave each person a lei purchased at the dollar store and our musician sang Hawaiian songs and then taught us the Hula. The following year we had an English High Tea theme and a spontaneous rendition of Octopus's Garden acted out with props and volunteers. Any musician of your acquaintance works. Failing that you can simply have background music of your choice. Ask people to volunteer. You will be surprised how many are willing.

Food; We've served dainty sandwiches and squares. For the high tea we used china tea cups and lunch plates. Sometimes we use colorful plastic plates. This year our theme is butterflies and we will use the plastic plates and glasses for lemonade and mugs for tea and coffee. Our savoury will be veggies in a mini flower pot, cold kebobs and butterfly shaped crackers.

Where: We have a large yard and can accommodate about 60 guests. If I had less room I would invite the number I could accommodate. The event could be held indoors or out. We have always had nice weather but planned to have it indoors if it rained. That would be very tight but not impossible. Consider your community hall, your church basement, a street party, etc.

Who: We have only invited women. In our rural community women enjoy a chance to get together and they love the garden party atmosphere.

We encourage them to bring a friend or two and suggest a date when we cannot accept any more.

On the Serious Side; I read all I can about WED/RLS and each year I have spoken passionately about it. You probably have a personal story to tell, how it affects the person with the disease as well as their family and friends. This is the part that I feel inspires people to donate so do your best, touch their hearts. Talk about how children suffer. Talk about the people with the disease that cannot do the things they love, concerts, travel, movies, etc. Remind people none of these folks ever thought there lives would turn out this way. Tell them the charity is underfunded. Tell them to be aware of WED/RLS and to spread the word.

Just do it, you will be so glad you did! Donna

Rochester, Minn. – April 10, 2014 – The Willis-Ekbom Disease (WED) Foundation has certified a specialty clinic in Innsbruck, Austria, as the first international Quality Care Center for people who have Willis-Ekbom disease (also known as restless legs syndrome, or WED/RLS). The Innsbruck Medical University, Department of Neurology, Sleep Lab and Sleep Disorders Outpatient Clinic has joined the Foundation’s WED/RLS Quality Care Center program, which aims to improve quality of care for people living with the disease.

Willis-Ekbom disease is a chronic neurological disorder affecting millions of people, with often devastating impact on quality of life; an estimated 2 to 3 percent of adults need clinical treatment for WED/RLS.

Birgit Hӧgl, MD, is director of the Sleep Lab and Sleep Disorders Outpatient Clinic in Innsbruck. As a WED/RLS Quality Care Center, the Innsbruck clinic will “improve education and promote sharing of best practices, thereby improving health care for the patient community. This program seeks to improve the quality and accessibility of care for individuals with WED/RLS in the European community,” says Dr. Hӧgl.

“We are honored to be recognized as a WED/RLS Quality Care Center by the Willis-Ekbom Disease Foundation,” says Dr. Werner Poewe, Director of Neurology, Innsbruck Medical University.

The WED Foundation is establishing a network of certified WED/RLS Quality Care Centers to improve diagnosis and treatment of the disease worldwide. Provider certification requires a high level of expertise and experience treating WED/RLS patients. The program benefits patients and families through:

· Recognition of clinics as leaders in the field and as specialty centers for patients who are traveling or in search of knowledgeable healthcare providers

· Availability of clinic staff as information resources for referring primary care providers

· Patient educational offerings, print materials and connections with WED Foundation local support groups

Other clinics certified as WED/RLS Quality Care Centers include the Johns Hopkins Center for Restless Legs Syndrome in Baltimore, Md.; the Mayo Clinic Center for Sleep Medicine in Rochester, Minn.; and the University of Texas Health Science Center at Houston.

The need for higher quality of care is urgent, says WED Foundation Executive Director Karla Dzienkowski. “People who have WED/RLS experience persistent barriers to effective diagnosis and treatment. Every day, the Foundation hears from patients who need help finding a knowledgeable provider to help manage their disease. Effective treatment is essential to managing their symptoms and maintaining a high quality of life, and our goal is to help providers meet this expectation.”

To learn more about the WED/RLS Quality Care Center Program, visit willis-ekbom.org/quality-care-program.

About the WED Foundation
The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease (restless legs syndrome, or WED/RLS). Founded in 1989 in Rochester, Minn., the Foundation’s goals are to increase awareness, improve treatments, and through research, find a cure. The Foundation serves health care providers, researchers, over 5,000 members, and an estimated seven million individuals in the United States and Canada who have the disease. The WED Foundation Research Grant Program has awarded $1.4 million to fund medical research on WED/RLS causes and treatments. For more information, visit www.willis-ekbom.org. Innsbruck Medical University, Department of Neurology, Sleep Lab and Sleep Disorders Outpatient Clinic
Anichstr. 35
6020 Innsbruck, Austria

Appointment Scheduling Information:
Contact: Maria Kuscher, Cesarie Ndayisaba, Manuela Oberlechner
Email: schlaf-neurologie@i-med.ac.atPhone number: + 43 512 504-23890

Certified Healthcare Provider(s):
Birgit Högl, MD, Associated Professor of Neurology, Senior Board Certified Sleep Specialist
Birgit Frauscher, MD, Associated Professor of Neurology, Senior Board Certified Sleep Specialist (currently on leave on leave until Oct 2015)
Elisabeth Brandauer, MD
Thomas Mitterling, MD

Traveling to different places, whether in the U.S. or abroad, has been a big part of my life, and I really enjoy it. But ever since I began dealing with RLS/WED, I’ve had to deal with some aspects of traveling in more proactive ways. As someone living with RLS/WED, it’s important to know whatever things may trigger your RLS/WED.

Whenever I travel, it is difficult to me to spend most of the time sitting in a seat for several hours at a time. [This actually became apparent to me when I was still in high school – sometimes my RLS/WED would be triggered because for a majority of the day I would be sitting in class, only to come home and sit some more while I studied or did homework. This led me to set aside time to walk on the treadmill in order to get myself to do something active. I find it is easy to lose track of how much time I actually spend sitting during the day, doing various things.

Once I started college, my mom found some stationary bike pedals for me to use when I needed to read or study, and I can definitely say they have come in handy more times than I can remember.] So I always make sure I get up and move around, whether it is a stop during a car trip or on a plane ride. If I am in a place where I have the option to take public transportation or I can walk to get from place to place, I try and do as much walking as possible. It is a great way to see a city, plus it will easily help you stay active. Interestingly enough, two years ago when I was in Europe for a couple of weeks, I walked a lot with the group I was traveling with and I slept so well during that time because I would be pretty exhausted by the time I went to bed.

Time zone changes, particularly those where there is difference of several hours, are also something I’ve needed to allow myself time to get used to. I have found that it is helpful to give myself at least a day to catch up on sleep in these instances.

I know that each time I travel, it becomes easier to handle because I am always learning what helps and what doesn’t.