February 17, 2020

By Carla Rahn Phillips, Chair of the RLS Foundation Board of Directors

For those of us with RLS – and that includes me – it’s easy to think we already have enough challenges without taking on something outside of our personal concerns. Nonetheless, many of us still volunteer our time or money, or both, for causes we believe in.

Although I have struggled with RLS for more than 25 years, I only learned of the RLS Foundation a few years ago. After discovering the Foundation’s website, I became a member to take full advantage of the information that the Foundation provides. Apart from becoming a member, however, it never occurred to me to volunteer my time. That changed due to an unexpected chain of coincidences.

As you may recall, August of 2017 marked a spectacular total eclipse of the sun that was visible across a wide swath of the continental United States. In the run-up to that eclipse, two of my college classmates started organizing a class get-together in Wyoming in the middle of the “path of totality” of the eclipse. It was shaping up to be a major event for our class, with five days of lectures from experts in astronomy and related fields, and the chance to visit with old friends. We were slated to virtually take over a remote mountain resort in Wyoming on the edge of Grand Tetons National Park, far from a major town. My husband and I were excited about attending, but, with my RLS, I began to worry about the meals we would be served. It sounds trivial, but if those meals were to have lots of salt and sugar, I knew I would not be able to sleep at night, because those are two of my triggers for RLS.

I was reluctant to raise my private concerns about the menus, even though attendance, lodging and meals had to be prepaid. Then one of the organizers asked if any of us had any special dietary requests, so I responded that it would be very helpful to have the option of low-sodium food, because I suffered from restless legs syndrome. It turned out that one of the organizers, Lew Phelps, also has RLS, and had already planned for low-sodium meals! Moreover, Lew had been a stalwart member of the RLS Foundation for decades, and in 2017 he had already chaired its Board of Directors for several years. The eclipse event was a great success. Even better, I was able to sleep well thanks to the foresight of Lew and his brother Chuck.

Long before memories of the eclipse faded, Lew suggested that I volunteer for the board of the Foundation. Unlike corporate boards of directors, nonprofit boards almost always serve without pay, and the members of the RLS board pay their own transportation and hotel costs for the annual face-to-face meeting, as well as all their other expenses. In other words, it truly is a voluntary and financial commitment. Several members of the board are busy professionals in healthcare or other fields. Nonetheless, they volunteer their time to the Foundation because of their passion to educate patients and healthcare professionals about RLS, support scientific research into its causes and management, and ultimately find a cure. I had recently retired from the University of Minnesota after four decades as a professor of European history, and Lew persuaded me that it was time to give back. I joined the Board of Directors in 2017 as one of the “civilian” members of that body – that is, a non-healthcare professional. Since then, by attending meetings of the board and its committees – nearly all online or by phone – I have learned an incredible amount about RLS and about the important work of the Foundation. When individuals make a major donation to the Foundation, members of the board thank them personally. As a board member, I have enjoyed writing to let major donors know how much we appreciate their support.

Lew just stepped down as chair of the Board of Directors after a long and distinguished tenure. One of his final acts as chair was to persuade me to succeed him as chair. Although I do not plan to replicate his long tenure, I hope I can make a useful contribution to the Foundation’s work. It’s the least I can do to thank the Foundation for helping me cope with my RLS.

As members, we receive NightWalkers and have access to webinars and the full library of the Foundation’s publications. Thousands of nonmembers also benefit from free information that the Foundation provides, and it costs time and money to produce that information. The best thing that members can do is to persuade everyone they know with RLS to become members of the Foundation, which does so much for us all.

Help Provide RLS Foundation Memberships to Those in Need

At the RLS Foundation, we hear from many individuals who have limited financial means and cannot afford the $35 to become an RLS Foundation member. Some are on a fixed income, have high medical bills, or simply fell on hard times. It could happen to any of us, and it is our policy to never turn anyone away.

To ensure that we can continue providing scholarship memberships to those in need, we unveiled our "Pay It Forward" initiative. This allows for donors or current members to "sponsor" an RLS Foundation membership for someone unable to afford it. Your generosity will give the recipient valuable information provided in our quarterly NightWalkers magazine, along with additional membership benefits and, most importantly, comfort in knowing they are a part of our caring RLS community.

The RLS Foundation is funded primarily by annual memberships and individual donations. There are many different ways you can give to the RLS Foundation, and lending a hand to a fellow RLS sufferer is a great way to "pay it forward" and let others know what we know - that you are not alone.

Happy holidays, everybody!

Thank You from Our Executive Director

As we plan for the season of giving thanks and gathering with family and friends, I want to be the first to thank each of you for your loyal support to the RLS Foundation. Your gifts have allowed a once tiny organization of a committed group of volunteers to grow and become the voice of the RLS community for 25 years.

We value our relationship with you, and want you to know that the RLS Foundation is here when you need us. As a nonprofit organization, our priority is clear: to support and serve the RLS community. Through our network of resources, you can remain connected to people who care and can relate to your concerns.

• Our online Discussion Board and blog, as well as our social media outlets ( Facebook, Twitter, Instagram and others) provide instant connection to others.
• Our staff is here to help you with a listening ear and informational materials, and can help identify RLS providers in your community and at certified RLS Quality Care Centers.
• Our network of volunteers are there to support you via phone or email, and through comforting and informational support group meetings.

On November 28, we hope you will join us on #GivingTuesday, the global celebration of giving. Membership is the lifeblood of our organization, and allows for us to provide integral resources to everyone suffering from this often-misunderstood disease. Your $35 each year directly strengthens our programs, including sponsoring research, producing educational events and materials, maintaining support groups, and providing assistance online.

Considering membership but haven't taken action? Know someone that would benefit from membership? Want to give the gift of membership to someone in need? Take action so we can reach our goal of 25 NEW Foundation members by the end of #GivingTuesday!

Your support makes a real difference in the lives of individuals living with RLS and their families.

Sincerely,

Karla Dzienkowski, RN, BSN

Executive Director

Promoting Awareness – One Gift Membership at a Time

By Barbara Faraone

When long-time RLS Foundation member Barbara Faraone sees the need for education, she takes action! In the past several years, Barbara has purchased over 25 RLS Foundation gift memberships for physicians, nurses, pharmacists, hospital administrators and others to promote education and awareness about RLS. At the RLS Foundation, we are extremely grateful to individuals like Barbara who use whatever creative means they have to raise awareness for RLS. Barbara, thank you for making a difference – you are truly an RLS hero!

I’m a 79-year-old grandmother who has suffered with restless legs since at least 18 years old, although I suffered from leg pains (or as the doctors used to say, “growing pains”) from a very young age. I remember going to high school and being so glad that classes were only 45 minutes long. I would always try to sit in the back of the room, as I was always moving about. I was often asked why I never sat still. I never really had an answer for people, but thought it was just me.

Even going to college, my place was always in the back of the room; it was just plain uncomfortable to sit, and I preferred to stand. Thus, standing in the back of the room was enjoyable for me.

I became a teacher of third grade, and that suited me just fine. I never sat at my desk. I was always about the room with my children, working on projects or just tutoring one-to-one, thus walking a lot. With age came marriage and two children. This, too, was always an active time for me. It was during this time that I began to notice that sleeping with covers over my legs was not good for me. The pressure of blankets just made my kicking in bed worse. I was never one to cuddle in bed, as the legs would not stay still. I did not know what to do to stop this kicking, and it was not welcome to my husband, as you can imagine.

As years followed, I found myself being awake for many nights and often going from bed to couch to floor. I tried sleeping with my back on the floor and legs up on the wall or the back of the sofa. I tried hot baths, warm milk, Bengay, soap under the mattress, and any other odd suggested thing to try, of which there were many. I must say that a scotch and water would often calm them during the evening, but it did not last through the night.

I soon learned to exist on three to four hours of sleep and sometimes an afternoon nap. I just figured it was something I had to live with. I might add that I had all the muscle and nerve tests done over a period of years, but nothing seemed to show up wrong.

Doctors were of no help until my general practitioner went to a lecture about RLS at the local hospital. When he came back from this, we started in on the approved medicines available at the time. That was some 20 years ago. Since then, I have tried them all in many combinations. They would seem to work, but within a short time I was right back to my old self of discomfort most of the night. When the discomfort turned to pain, I began the treatment of painkillers. Yes, they worked, but got to be an all-day thing. And oh my, what it did to my system and mind. This was awful. I had to come off them.

I went to an RLS meeting in San Antonio and met the folks there. With their help, I made contact with a specialist at an institution that is now a certified RLS Quality Care Center. I call him my “savior,” as with his help and methadone, I do sleep, and my life is somewhat normal – or what I think of as normal. My legs are not really still during the day, but my friends have gotten used to me always moving. Thank goodness for friends.

My legs hurt most of the day, but during the night they are quiet enough that wherever I fall asleep, I sleep – whether it be in bed or on the couch.

Now, I have asked for years, what can I do for others who have RLS? Yes, I can contribute to the RLS Foundation, and it does help, especially in research. But I feel that I need to do something more to help educate medical providers.

So … I have been buying RLS Foundation memberships for all the doctors I meet in the hopes they will read NightWalkers and maybe learn something. Maybe they will believe what I say to them.

For example, I found a local hospital was advertising that they treated RLS. I went to see the doctor, only to find out he knew nothing of RLS. In fact, he called my druggist, as he thought I was addicted and needed help, and had no idea the uses for methadone. My druggist, who has a subscription to NightWalkers, gave him a 15-minute lecture as to the uses of methadone. I had the RLS Foundation send the doctor and hospital administrator a gift membership with information about RLS and a copy of NightWalkers.

I think my count of current gift memberships is up to something like 12 doctors and hospital administrators, and then I add friends or nurses or whomever needs an education about RLS. Has it made a difference? I don’t know, but I do know they are getting the correct information, and this can only help in the future.

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine. Become a member today to receive this and other member benefits!