Restless Legs Syndrome Foundation Blog

The latest "cartoon" in the new WED series NightWalker comes from the problems we face with people just not understanding what this disease is all about.  The urge to stand or move is so compelling to us but is simply not something most others can comprehend.

There truly are "no standing" policies in many theaters and almost all airlines.  Many people with WED are upset at not being able to watch an entire movie because they either fall asleep from medication or because they just can't sit still. Trying to explain this problem to an usher can be frustrating to say the least.  A good friend of mine had to leave the movie theater after they refused to let him stand in the back for the rest of the movie.  Airlines have strict rules about standing or walking for safety reasons.  If you explain the situation before boarding the plane, you can sometimes get an aisle or emergency row seat which at least gives you a little more wiggle room.  If you are very fortunate, you might find a flight attendant that has had experience with WED and will fudge the rules for you!

Office settings are a different matter.  When possible, explain to your supervisor or manager just what WED is and the need sometimes to be able to stand. Try to do so in an inconspicuous manner and for as short a period as possible.  Because, let's face it, moving around during a meeting can be disruptive--despite the fact that we can't help it.

I think the most heart-breaking situation though is not listed on a cartoon panel.  That's when friends and family just don't get it.  We try so hard to explain, teach and share what living with WED is like.  We educate ourselves so we can educate others.  We try hard to sit still, pay attention, listen closely but finally we have to get up, stand, walk around.  There are a few who understand yet there are also others who give you that look and you just have to sigh, explain again, or just do what you have to do and endure.  My husband and I were recently at a card party with several neighbors and friends.  There was an uneven number of players so I said I would sit out.  Some people insisted that I at least sit and keep score.  Some thought I was being antisocial.  Only two asked, "Do you need to move around?"  It wasn't that the others didn't care--they just did not get it.  They all know I have WED; they just don't understand it.

Our culture is getting better helping the handicapped get along in society, although there is still much work to be done.  We have "no smoking" areas in many restaurants and public areas--many towns are becoming non-smoking towns.  Maybe we need to be more assertive. Being militant or accusing will not work. That generally causes people to become defensive.  Maybe we need to stand together (pun intended) a little more and insist that the "no standing" rules and ideas need to be changed. Maybe we need to find creative ways to get our point across, like sharing this cartoon.  Humor might help.  Who is willing to stand with me?  Maybe we can organize some stand-ins (instead of sit-ins) or stand-up comedians who will laugh WITH us and not at us.  I, for one, will not take this lying down!!

Seriously, we just need to keep at it--explaining and educating.  One step and stand at a time.

Dear WED/RLS Community,

After 12 wonderful years at the Foundation, I have made the difficult decision to retire from my position as Executive Director at the end of the calendar year.  I will spend my final days transitioning out of my role and handing responsibilities to our very capable national office staff.

The board of directors are in the process of searching for a new Executive Director. In the meantime, the Foundation will have an interim Executive Director. Our strong and talented board and staff will continue to manage and grow the Foundation in partnership with the interim Executive Director and eventually the new Executive Director.  I am proud of our accomplishments and look forward to celebrating the Foundation’s bright future.

I have been extremely fortunate to be able to work with the Foundation on behalf of you, the WED/RLS community.  I will miss the Board of Directors, the Medical and Scientific Advisory Boards, staff members and the amazing volunteers that I have been privileged to work with to achieve our mission. 

As we’ve done during other periods of change, we will work to maintain services to the WED/RLS community and ensure timely communication with everyone throughout the transition.  We will work together to make sure such major programs as the new Quality Care Center Initiative are carried forward into full implementation. 

I am certain the Foundation will continue to grow as WEDF-funded research points to new treatments and a cure, the WED/RLS Quality Care Center Network develops new standards for quality care, and people connect with the Foundation in new ways, via social media and the internet.  I will miss having the inside track on these developments, but I will greatly enjoy watching them unfold.  And, I will miss each and every friend that I have made on this amazing voyage with the WED/RLS community.

With best wishes,


Georgianna Bell
Executive Director (retiring 12-31-13)

Results from the “Patient Odyssey” Survey

OVERVIEW
The “Patient Odyssey” survey, conducted by the Willis-Ekbom Disease (WED) Foundation and sponsored by XenoPort, Inc., provides important new insights regarding the management of RLS/WED. The survey was designed to measure how RLS/WED impacts daily living, both from the perspective of patients as well as spouses/partners, including treatment considerations, emotional well-being, relationships and lifestyle. By assessing the findings, WED Foundation will be able to develop new tools to support patients, partners/spouses and physicians as they work together to achieve long-term disease management; the Foundation will also utilize the survey findings to help create greater understanding of RLS/WED among the general public.

ABOUT THE SURVEY
The survey was sent to more than 3,000 members of the WED Foundation; members also received companion surveys to provide to their spouses/partners. More than 1600 adult patients (70% women; 30% men) and more than 670 adult spouses/partners (65% men; 35% women) responded to the survey, either online or by mail. The survey was fielded from October 7-November 8, 2013.

KEY SURVEY FINDINGS
The following survey findings pertain specifically to treatment experience among patients. Findings related to emotional well-being, relationships and lifestyle, both among patients as well as spouses/partners, will be released in 2014.

Patient Profile

• All patient respondents identified themselves as having been diagnosed with RLS/WED, either by a physician or through self-diagnosis, with the majority reporting diagnosis between 30-70 years of age (84%).
• Almost one-third (35%) were diagnosed by a primary care physician, while another 39% were diagnosed by a neurologist and/or sleep specialist. 
• Eighty-three percent (83%) started taking medication between the ages of 30 and 70, despite the fact that almost half (45%) began experiencing symptoms before age 30. 
• Ninety-five percent (95%) of patients indicated they have taken prescription medication for their RLS/WED; of these patients, 97% were currently on prescription medication.
• 73% of patients report experiencing their RLS/WED symptoms on a daily basis.
• Sixty-one percent (61%) of patients report that their symptoms typically start in the afternoon or evening; however, 20% also report that the time that their symptoms start varies from day to day. 
• In addition to prescription treatments, patients also reported taking iron supplements (43%), natural remedies (25%) and over-the-counter sleep aids (21%).

Prescription Treatment Experience
Note: the following statistics pertain to the 95% of patient survey respondents who reported they have taken prescription medication.

Symptom Control and Medication Switching

• Only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s).
• About one-third (31%) of patients have switched medications three or more times since diagnosis.
• Almost one-quarter (23%) of patients have tried five or more medications to treat their symptoms.
• Patients reported lack of nighttime symptom control (46%), symptoms reappearing or getting worse after several months or years using a medication (33%), lack of daytime symptom control (24%) and experiencing unwanted side effects (23%) as the most common reasons for changing medication in the past.
• Ninety-three percent (93%) of patients “agreed” that they wished more effective medications were available to treat RLS/WED.
• Half (50%) report that they have been suffering with RLS/WED for a long time and nothing seems to work/adequately control their symptoms.

Side Effects

• More than two-thirds (68%) of patients reported that they have experienced the side effect of augmentation (defined as a worsening of RLS/WED symptoms that occur after starting a prescription medication to treat RLS/WED. Particularly, symptoms may occur earlier in the day, spread to body parts other than the legs, be more intense, and/or begin after a shorter period of rest of inactivity than before treatment).
• Sixty percent (60%) reported the side effect of augmentation to their physician, leading roughly one-third (32%) of patients to discontinue treatment and start a new medication while another 16% report that the dose or frequency of their medication was increased.
• A little less than one quarter (22%) of patients have experienced withdrawal symptoms while discontinuing treatment.

Physician Knowledge of RLS/WED

• Sixty-eight percent (68%) of patients “strongly agree” that there needs to be greater physician knowledge and understanding of RLS/WED.
• Forty-two percent (42%) “agree” that their health care provider does not understand their disease.
• About three-quarters (76%) “agree” that their doctor has prescribed the medication that is right for them.

Donna's Story

I've suffered from WED/RLS my entire life - since I was a child.

I was always being told to sit still, which of course I couldn't do. I'm 63 years old now, but when I was about 50 I finally couldn't take it anymore and my general practitioner referred me to a neurologist for treatment.

I was going for several days without sleep. My condition was affecting my job performance and home life. The neurologist started me on Requip and almost immediately I was getting 7-8 hours of restful sleep a night for the first time in as long as I could remember. However with increased dosages the Requip, the medication soon started losing its ability to relieve my symptoms. My doctor soon switched to Mixapex. I started with low doses, then progressed to Mixapex ER 1.5.

I was still experiencing what I refer to as breakthroughs (sleep) during the night so we added another .5 to 1.0 mg at night. This helped most nights, but I soon could not find any relief during, and right after a full moon. I also find that drastic changes in atmospheric pressure changes impact my WED/RLS. I’ve tracked/documented these symptoms. In some cases, I’ve gone up to 5 days without any sleep.

I should also mention that my maternal aunt and paternal grandmother suffered from WED/RLS as well. This condition causes depression, sleep deprivation, confusion, and all around irritability. I should also mention that twice during major surgery and recovery I have woke up while under anesthesia due to the WED/RLS severity.

I hope that this will assist you in your research.