Thursday, April 10, 2014

First international Quality Care Center approved

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.

Quality Care Center Infomation
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

Guest Blogger: Traveling with WED/RLS by Ali Dzienkowski

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.

About the bloggerLast May, I graduated from college with a Bachelor of Arts and I'm planning to attend graduate school in the fall. In my free time I enjoy reading, watching movies, doing arts and crafts, going to concerts for bands I like, and spending time with friends and family. - Ali Dzienkowski

Monday, April 7, 2014

Partnership

I don’t know about you, but when I got married 40 years ago I thought love would conquer all.  Of course there would be ups and downs but love would prevail and there was nothing we wouldn’t be able to solve by talking it out.  40 years later, I’m still married, just not so naive.  

Whether you have been in a relationship for years or months, you soon learn that there has to be a lot of give and take.  Communication is vital, but sometimes you can talk a problem to death and still not come up with a solution. That’s part of what  one of the “cartoons” on the WED Facebook page is about.  

Talk to 50 people with WED and you will get 50 different descriptions of what it feels like.  And of those 50 descriptions, none will actually describe what we truly feel.  It is frustrating to try and explain what we feel, both physically and mentally.  In turn, it is truly hard for our partners to even begin to feel like they understand.  They may be sympathetic.  They may be supportive.  They may want to help in any way they can.  Then again, they may not.  They may be anywhere in-between.






The first panel of the “cartoon” shows a person sitting in bed trying to rub the WED feelings away.  Her partner sleeps on.  I am fortunate; my husband could sleep through a tornado siren.  My good friend and her husband haven’t slept together in years.  I have visited with people who can and can’t, do and don’t, sleep together.  Some of the latter even feel guilty about not sleeping together.  Why? Sleeping in the same bed does not guarantee a good marriage!  But either way, when those symptoms strike, you often feel lonely.

The second panel shows the way we typically fight WED--walking.  And walking.  And trying to find something that will enable us to sleep.  This panel also shows the partner peeking around a corner to see what is going on.  Maybe this happens, maybe it doesn’t.  But partners often worry about us more than we realize.  WED is a part of our lives which makes it part of theirs.  How they deal with is can make or break a relationship.  How WE deal with it often determines how they perceive it.  It’s back to that communication issue.

The last panel is truly done tongue-in-cheek.  I doubt that there are many partners who willingly get up to walk with us in the middle of the night.  If your partner does (at least once in awhile), then I hope you tell them how wonderful that is.  If your partner doesn’t, don’t feel like you are being slighted. That’s a lot to ask and probably isn’t very realistic.  Of course, you can show them the “cartoon” as a hint, especially if the communication lines are down.  Maybe it will start a conversation.  

40 years has taught me this much.  If you feel alone in this struggle with WED, if you feel overwhelmed with the symptoms, or the fatigue or any other problem, reach out.  The worst thing we can do is to be stoic about this.  Thinking and acting like you can handle this alone, without any help or understanding from your partner, not only makes your life harder but it also steals away the chance of your partnership becoming stronger.  There is no such thing as a 50/50 partnership. Some of your best days may be more 95/5.  No matter which side of the WED situation you are on, trust your partner.  Listen to each other.  If talking isn’t helping, just be there for each other.  A touch or a hug during bad times can often speak louder than words.

And even though it is hard to remember sometimes--you are not alone.