Restless Legs Syndrome Foundation Blog

Frequently Asked Questions About RLS Foundation Membership

At the RLS Foundation, we appreciate your support through membership. All RLS Foundation members can be proud of the part they play in making our mission a reality and reaching our goals to improve treatments and, through research, find a cure. If you have additional questions about membership, email info@rls.org or call (512) 366-9109.

New Membership

Q: What do I receive when I become an RLS Foundation member?

A: When you sign up for an RLS Foundation membership, you will receive a new member packet in the mail (or via email for international members) that includes the most recent edition of NightWalkers; up-to-date publications on the diagnosis, treatment and management of RLS; helpful handouts to carry with you, like the Medical Alert Card and Special Accommodations card for travel; and more! In addition to these benefits, you will gain unlimited access to resources through the online Member Portal, which contains all RLS Foundation publications, webinar recordings and an archive of all NightWalkers issues.

Q: Is there an annual membership fee?

A: The RLS Foundation receives the majority of its funding from membership and individual donations, plus a small portion from grants. RLS Foundation memberships have an annual fee of $40. Over 77% of funds raised go directly toward RLS Foundation programs, including member/patient services, awareness outreach and educational resources developed by medical experts, and funding for the only research grant program dedicated to RLS.

Q: Is my membership fee tax deductible?

A: Yes. Because the RLS Foundation is a 501(c)(3) not-for-profit organization, all contributions – including membership fees and donations – are tax deductible up to the full extent permissible by law. Emails and letters from the Foundation acknowledging your donation serve as gift acknowledgments for tax purposes.

Q: How do I become a member?

A: Choose one of three easy ways: 1) Go to www.rls.org/become-a-member to provide your contact information and pay with a credit card; 2) Call us at (512) 366-9109 to provide all information by phone; or 3) Download a new member form at www.rls.org/joinform and mail the completed form along with a check payable in US funds to the RLS Foundation. Memberships take up to 24 business hours to process.

Q: Is financial assistance available?

A: Absolutely. In addition to offering discounted membership specials twice a year, scholarship memberships are available at no cost to those in need. If Foundation membership is outside of your budget, please email us at info@rls.org or call (512) 366-9109 to request a free or discounted scholarship membership.

Membership Renewal

Q: When does my membership renew?

A: All annual memberships renew on September 30, according to our fiscal year. However, regardless of your join date, you will receive four issues of NightWalkers (equivalent to one year’s worth of membership) for the calendar year in which you join.

Q: How can I tell if my membership has expired?

A: There are several ways to check the status of your RLS Foundation membership: 1) View the back of your most recent copy of NightWalkers to locate the expiration date of your membership, printed above your name and address. 2) Go online to our website (www.rls.org), click “Member Login,” enter your username and password and click “Renew Your Membership Here.” You will be routed to a page that lists your membership details, including status. IMPORTANT NOTE: Membership status will only be listed if you are first logged into the website with your user name and password. 3) Give us a call at (512) 366-9109 or email us at info@rls.org. We’re happy to check your record in our system!

Q: How do I renew my membership?

A: Go online to our website at www.rls.org/renew, or click “Member Login,” enter your username and password, then click “Renew Your Membership Here.” You can also renew over the phone by calling (512) 366-9109 or by sending a US check payable to the RLS Foundation. Please be sure to specify “Membership” in the memo section of your check.

Q: I accidentally renewed my membership twice. Can you help?

A: A second transaction through the renewal page will be applied as an additional year of membership. If you prefer to apply this as a donation or to request a refund, please contact us right away at (512) 366-9109.

Member Portal

Q: I purchased a membership. Why can’t I open the online resources?

A: After purchasing an RLS Foundation membership, you must also create an online account to gain access to the Member Portal. Go to www.rls.org/login and click “New User Registration.” You will be asked to create a username and a password.

IMPORTANT NOTE: The password must be at least 12 characters, including at least one uppercase letter, one lowercase letter, one number and one special character, and should not include "RLS". Registration requests take up to 24 business hours to be linked to your membership record. We recommend completing this step immediately after purchasing your membership to expedite the process.

RLS Advocacy: One Family Shares Their Story

Advocating for the RLS community and against the barriers posed by existing legislation has always been at the heart of the RLS Foundation (RLSF). Last month, RLSF Executive Director, Karla Dzienkowski, and Administrative Assistant, Adrianna Colucci, flew from Austin, TX to Washington, DC. They were joined by Dr. Shalini Paruthi, dedicated RLSF Board of Directors Chair, and her two sons, Yash and Sanjay, to meet with and educate congressional staff on RLS. Civic engagement such as legislative meetings like this one, is an integral part of the democratic process and helps politicians understand how they can better represent their constituents in policy decisions.

During this July advocacy day, RLS representatives met with Senate and House offices from Texas, where the RLSF office is located, and Missouri, the home of the Paruthi family. This opportunity brought recognition to the Foundation’s legislative priorities to help maintain a presence within federal, state and local offices. The critical issues highlighted within these meetings included increasing research funding, enhancing education and awareness, and protecting access to critical RLS therapies. Most importantly, Dr. Paruthi, Yash and Sanjay, who all have RLS, shared their personal accounts of living with the disease and how it impacts their daily lives.

The morning began in the offices of Senators Josh Hawley (MO) and John Cornyn (TX). Dr. Paruthi is Co-Director of Saint Luke's Sleep Medicine & Research Center as well as an Adjunct Associate Professor at Saint Louis University School of Medicine. Her unique perspective as both an RLS provider and an educator allowed her to speak on the importance of sleep medicine education in the medical and academic setting. Within a medical student’s own schooling, they may receive no more than one hour of education on sleep medicine. She sees the impact of this deficit as a pediatric sleep physician, since it has been shown that RLS is often underdiagnosed or misdiagnosed in children due to an adolescent’s inability to express symptoms, or symptoms being attributed to other conditions such as “growing pains” or the inability to sit still often seen with ADHD.

Yash and Sanjay, Dr. Paruthi’s children who also have RLS, shared their passion for sleep advocacy within congressional offices. For Yash, sleep and RLS awareness is particularly valuable for children and teenagers. As a high school student, he witnesses how sleep deficits impact “grades, academic performance, athleticism, and the ability to focus” in his peers. Good sleep is a necessity for everyone, especially during the developmental years of childhood and young adulthood. Proper diagnosis and effective treatments at a younger age help prevent delays in diagnosis which can lead to exacerbated health issues and increased mental health issues in adulthood. As Yash prepares for his junior year in high school, he will continue to value the importance of sleep, particularly in his planned future career as a doctor.

Rising 8th grader, Sanjay, described how his own RLS symptoms impact his sleep and daytime routines, sometimes causing difficulties in concentration in the afternoon. Sanjay is hyper-aware of the importance of sleep (thanks to his sleep specialist parents!) and notices the all-too-common discussions he has with his own friends over lack of sleep. For legislators, the most compelling narratives come from personal anecdotes, like Yash’s and Sanjay’s. Representatives from the Senate offices were engaged and asked questions to learn directly from their constituents, whose personal testaments provided insight into a disease that representatives had most likely never heard of. By providing a name, a story, and human sentiment to a cause, it allows policymakers to recognize the implications of policy on real people and their communities.

The afternoon focused on meetings with representatives from House Members Michael Burgess (TX), Marc Veasey (TX) and Anne Wagner (MO). RLSF staff continued to emphasize the necessity of funding federal programs such as the National Institutes of Health to help researchers access grants when conducting RLS clinical trials and allocating resources to programs such as the Chronic Diseases of Education and Awareness. Karla Dzienkowski, who speaks with RLS physicians, patients, and even family members daily, emphasized the need for continued research with representatives.

“Here at the RLS Foundation, we are dedicated to improving the lives of those who live with RLS, through advocacy, support, and funding research for improved treatments, ultimately a cure. Sleep disorders such as RLS continue to be misunderstood and underdiagnosed, so our goal here today is to encourage lawmakers to consider a large portion of the population that is overlooked. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Sleep plays a critical role in the quality of life, mental health and long-term physical health and well-being. Heightened research and awareness will considerably benefit the constituents [they] represent within [their] own communities.”

Further, legislators were asked to consider RLS when forming policies surrounding prescription guidelines—policies that will address the opioid pandemic while allowing refractory RLS patients to maintain access to critical therapies, including low-dose total opioids. Each day, the RLSF staff hear from those seeking educational resources for themselves, physicians, and family members, often eager to find a way to regain control of their life and their sleep. Even after quality care is secured, unfortunately, many RLS members must plan for the unexpected—their physician’s retirement, stricter medication regulations, pharmacists unwilling to fill RLS prescriptions or stigma surrounding their management plan. These obstacles create an undue burden on a patient community that truly relies on the accessibility of their medications for stability.

For Yash and Sanjay, this was their first experience meeting and speaking with their legislative offices. Sanjay remarked on the sense of accomplishment he felt by gaining “insight into the democratic process of meeting with representatives and the importance of [his] role in advocacy” while using his voice for issues that were important to him. Advocacy can start in small ways, simply by bringing awareness to RLS in your physician’s office or by speaking with family and neighbors. However, a collective voice that echoes within the walls of your representative’s office contributes to a more robust advocacy effort.

Just like Yash and Sanjay, you can use your story to engage with legislators by joining the RLS Foundation for Hill Day in Washington, DC on October 23rd. Hill Day is an opportunity to become part of a unified movement of educators, dedicated to spreading awareness about RLS and helping legislators understand the significance of the policy that they pass. The RLS Foundation staff is excited to meet you and unite our voices on Capitol Hill! If you have questions about Hill Day, visit our FAQ page or email adrianna@rls.org. Register online now.*

Thank you to Phil Goglas and Matt Duquette of the Health and Medicine Counsel, who guided and coordinated meetings with congressional offices. Thank you to all of the representatives who dedicated their time to learning about RLS and engaging with our cause.

*Registration by October 1 for Hill Day is encouraged. This allows ample time to coordinate meetings with congressional representatives in your state and your district.

We are so excited to share details about our annual RLS Hill Day! Members of the RLS community, RLS Foundation staff, Board members and RLS physicians join together to speak with congressional representatives as their constituents. Advocacy is an integral part of our democratic process, and the RLS community’s voice deserves to be heard. Below is a brief overview of what the day may look like and commonly asked questions. If you have any further questions, reach out to adrianna@rls.org.

Tentative Agenda, Monday, October 23, 2023*

8:00 – 9:00 AM: Welcome Session at Health and Medicine Counsel, 50 F St NW, Suite 730, Washington, DC
9:00 AM: Travel to Russell Senate Office Building, 2 Constitution Ave NE, Washington, DC
9:30 – 12:00 PM: Senate Meetings
12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria
1:00 PM: Walk to Rayburn House Office Building, 45 Independence Ave SW, Washington, DC
1:30 - 4:00 PM: House Meetings
4:00 PM: Debrief**

*This schedule is tentative and may change based on office availability.
**If you cannot stay for the entire day due to travel times, please let us know before Oct. 1 your approximate departure time.

Preparation

Q. What should I bring with me?

A. A valid ID will be required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small purse with your wallet, ID, camera, portable phone charger, or other personal effects. Water is permitted inside the building. Please leave behind prohibited items including perfumes, aerosol containers, weapons, backpacks, and suitcases as you will go through security.

Q. Is there a dress code?

A. Business casual attire is appropriate. You should wear comfortable shoes as you will be walking/standing for most of the day.

Q. What are the legislative priorities we are advocating for?

A. Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. Click here to view the complete legislative agenda.

Q. What is the Health and Medicine Counsel (HMC)?

A. Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Q. Will we receive training prior to visits with our representatives?

A. There are advocacy materials available on our website under the “Advocacy” Tab or can be accessed by clicking here.

A “Prep Packet” will be distributed a few weeks prior to the event and will include an itinerary, a map of the area, advocacy talking points, the Foundation’s legislative priorities, and a sample meeting outline.

On Monday morning we will have a welcome session with our HMC representatives who will prepare you for the day and answer any remaining questions.

Q. How can I prepare for Hill Day?

A. Step 1: Register at: https://www.rls.org/get-involved/advocacy. Registering in advance allows our HMC representatives to target and schedule meetings with the legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Remember, representatives want to hear why policies impact their constituents, which is why your story is so important.

Step 3: Check out our advocacy resources under the “Advocacy” Tab or by clicking here.

Step 4: Plan your travel including hotel reservations, car rentals, public transportation, or other necessary details.

Creating an Effective Story

Q. How do I craft a concise story?

A. Meetings last about 15-20 minutes, so it is important to be concise to allow as many people to share as possible. Prioritize the aspects of your story that represent your struggles most effectively. For more tips, watch our advocacy training video on "How to Craft a Concise Story."

Q. How long should my story be?

A. Please limit it to 3-5 minutes.

Q. What are the most important talking points?

A. Sharing your unique story helps congressional staff members understand how to better serve the constituents they represent. Highlight the struggles you faced in receiving a diagnosis, having access to treatment, and the impact RLS has on your daily life. You are the expert of your own story!

Q. How can I ensure my story is the most impactful?

A. Be respectful and courteous, regardless of political affiliation. Working with both political parties ensures we are heard regardless of who is in office.

Integrate passion into your story. The HMC and RSLF will highlight statistics and facts that support our legislative agenda, but what is most impactful is hearing from you and the very real difficulties faced by your community.

What To Expect

Q. This is my first time participating in any type of advocacy work- what should I expect?

A. Face-to-face advocacy sounds daunting, but it will not take you long to feel confident when meeting with representatives! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance and you will receive the final schedule about a week prior. You will likely meet with 7-10 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Q. How is each meeting structured?

A. You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

An HMC representative will introduce the group, each participant will introduce themself. An RLSF representative will explain what RLS is and what the RLS Foundation does. You will share your story and explain your challenges in 3-5 minutes. The HMC rep will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

Q. What is my role in this meeting?

A. Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Provide your realistic experience and highlight that while everyone’s story is different, there are common struggles that RLS patients endure.

Q. How is it decided which representatives we meet with?

A. HMC will organize groups, which may be based on your state residency. When coordinating meetings, they target legislators based on constituency.

Q. What do I do if I am asked a question that I do not know the answer to?

A. If you are asked a question that you do not know the answer to, no worries! You are there to share your story, not to act as a medical expert. All medical questions will be answered by staff or an appropriate medical professional in your group.

Q. Should I follow-up with the representatives I meet?

A. The RLS Foundation will track representatives spoken to and follow up accordingly. However, you can also reach out on your own by collecting the staffer’s contact information and thanking them for their time.

Q. What are some of the past successes of the Foundation’s public policy initiatives?

A. The RLS Foundation has hosted successful Hill Day campaigns and Virtual Advocacy events in the past. It has allowed us to increase engagement with legislators and meet our legislative priorities, including securing funding for research, and pushing for access to appropriate treatment.

Travel

Q. I am commuting by car. Where can I park?

A. The closest parking structure is Market Square Parking Garage located at 701/801 Pennsylvania Avenue NW. You can reserve a parking ticket in advance for reasonable prices. It is about a 20-minute walk to the meeting area.

Q. Can I commute by train?

A. The HMC office is just a short walk from Union Station.

Q. Q. I am attending the RLS National Patient Symposium. What transportation options are available to get from Baltimore to DC?

A.If you are not renting a car, you may take a taxi or use a riding-sharing service (such as Lyft or Uber) to travel to your destination. The Maritime Conference Center offers free shuttle service to and from the conference center and the MARC/Amtrak Station which has service directly to Union Station in DC.

Q. What airport should I fly in/out of?

A. If you are attending the Patient Symposium, the closest airport to fly into is Baltimore-Washington Airport (BWI). However, if you plan on attending Hill Day, the closest airport to fly out of is Ronald Reagan Washington National Airport (DCA). Make sure to schedule your flights accordingly.

Q. What hotels are in the area?

A. There are plenty of hotels in the area, both within walking distance and driving distance.

Options within walking distance:
- Phoenix Park Hotel: 520 N Capitol St. (10 min walk)
- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (10 min walk)
- Kimpton George Hotel: 15 E St. NW (10 min walk)

Options within driving distance:
- Hilton Garden Inn: 2020 Richmond Highway Arlington (20 min drive)
- Lyle Hotel: 1731 New Hampshire Ave NW (20 min drive)
- Cambria Hotel Capitol Riverfront: 69 Q St SW (12 min drive)
- State Plaza Hotel: 2117 E St NW (13 min drive)
- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (8 min drive)

You may need to consider car rentals or ride sharing services as a form of transportation. Be sure to reserve all accommodations in advance!

RLS Foundation Welcomes New Board Chair, Dr. Shalini Paruthi

By Clara Schlemeyer, RLS Foundation Program Coordinator

I recently had the pleasure of interviewing Dr. Shalini Paruthi, who joined the Foundation’s Board of Directors in 2018 and became Chair this year! Dr. Paruthi also dedicates her time to the AASM (American Academy of Sleep). She is certified in both internal medicine and sleep medicine and has extensive expertise in treating both pediatric and adult patients, but her particular interest is in sleep disorders of childhood – obstructive sleep apnea, insomnia, narcolepsy, and – of course – restless legs syndrome. While treating her patients, she is also educating future doctors at Saint Louis University School of Medicine. Her willingness to teach, treat, and share her knowledge is inspiring.

Q. What was your motivation to get involved with the RLS Foundation, and why did you choose to stay involved?

A. My patients are my biggest motivators! I specialize in sleep disorders and have a specific interest in RLS, because I am also an RLS patient. It’s something that I see every day that is easily misunderstood, and there is not enough good, reliable, truthful information available for people. I think one of the most important things that physicians can do is to advocate for our patients. When Karla Dzienkowski reached out to me knowing that I had an interest in RLS, and that my primary focus is on pediatric sleep disorders, it was an excellent opportunity for me to bring my advocacy to the Foundation.

Q. As a physician who specializes in sleep disorders, what knowledge and skills do you hope to bring to the Board as you step into your role as chair?

A. One of the best parts of my day is that I am a teaching physician. I previously taught full-time at Saint Louis University and now am at Saint Luke’s Hospital in Saint Louis. In my role at St. Luke’s, I continue to teach rotators about sleep disorders. I want to make sure that they have a very strong knowledge of all the different sleep disorders, including RLS, which can be very difficult to recognize and diagnose. Sometimes patients cannot articulate their exact symptoms or the symptoms overlap with other medical disorders. As a teaching physician, in every patient visit, I am not only educating the patient but also educating the learners rotating with me.

Additionally, I chaired the program committee at the American Academy of Sleep Medicine for two years. The program committee plans the annual national SLEEP meeting, during which nearly 5,000 physicians, nurses, sleep technicians and sleep researchers gather to share knowledge and learn from one another. That experience enabled me to help with the Foundation’s educational events, such as our virtual Summits and our in-person Patient Symposium, where I served as moderator and educator.

Q. What is your favorite part about serving on this Board?

A. My fellow Board Members! I have met so many people with such different and diverse talents, backgrounds and perspectives, and every one of them is so dedicated to our mission. They want nothing more than to make sure that we are increasing RLS awareness, improving treatments and looking for the best research opportunities. Each Board member is focused on improving RLS diagnosis opportunties and ensuring wider availability of proper treatment. I just see so much passion, dedication and really great teamwork.

Q. How has living with RLS fueled your passion for helping the RLS community?

A. Having RLS, and at times suffering terribly from it, has really opened my eyes to the lack of knowledge surrounding RLS. I am very passionate about educating people about RLS and that it is a serious disorder. It can be so disruptive to a person’s quality of life or their ability to sleep well at night, which then affects their daytime function. For me, it has increased my compassion and empathy for others who suffer from RLS, and I want to do as much as I can within the RLS Foundation to increase awareness and help others know there is hope in finding a treatment that works for them. In addition, we must remind everyone that RLS is also a pediatric disorder with many young children or teenagers having RLS as their cause of insomnia.

Q. What are your future goals and aspirations for the Board?

A. The future goals for the Board are very clearly and appropriately tied to our mission. I hope to increase awareness about pediatric RLS. When a child comes to see me in the office, their parents have already tried all sorts of good sleep hygiene and techniques they have found on the internet, or followed suggestions from family and friends. Yet, they can’t understand what is being so disruptive to their child’s sleep. Often, no one has asked them questions about uncomfortable sensations in the legs or those urges to move in the evenings and the restlessness that comes along with it. Once we diagnose their RLS and begin treatment, they see a huge improvement in their child and the whole family’s interactions. As a Board we are making progress in education, and we must recognize that RLS affects the lifespan, from young children all the way up to older adults.

It is incredibly important for us to request proposals for research projects that can be funded. We have an amazing group of donors who understand just how much RLS affects others, and our best bet is to continue to fund high-quality research that will get us closer to finding better treatments and a cure for RLS. I want to express my deep gratitude for the work of the staff at the RLS Foundation; Karla, Zibby, Clara and Adrianna are an absolutely amazing, hard-working group of dedicated women who really care about people suffering from RLS.

Q. What is your biggest piece of advice for those struggling with their RLS?

A. People are their own best experts; we can recognize when something is not right within our bodies. When you don’t get a satisfactory answer about a problem you are having, it doesn’t mean that your doctor does not care or that they are dismissing you. It may just be that they don’t know enough about RLS and may not realize what an impact it is having on your quality of life. If at first you see a clinician who does not quite understand what you are saying, it does not mean that all doctors do not know about it, it just means you need to keep looking until you find the right physician who does know about RLS. Sometimes that means doing a little bit of detective work. Most neurologists should know about RLS, and even if they are not experts, they may be able to refer you either to a movement disorder specialist within neurology or directly to a board-certified sleep physician at an accredited sleep center. Being your own advocate and not settling for the first answer that you get – just being true to your body – is my best piece of advice on RLS.

To view a list of healthcare providers organized by state who have come forward expressing an interest and knowledge in treating RLS or learn more about RLS Quality Care Centers, visit www.rls.org.

Board Spotlight: Dr. Christopher Earley

By Adrianna Colucci, RLS Foundation Administrative Assistant

Christopher J. Earley, MB, BCh, PhD, FRCPI, is both a professor of neurology at the renowned Johns Hopkins School of Medicine and the director of the Johns Hopkins Center for Restless Legs Syndrome, a certified RLS Quality Care Center in Baltimore. Among various other achievements, he is also chair of the RLS Foundation’s Scientific and Medical Advisory Board (SMAB). Dr. Earley’s devotion to neurology and sleep medicine for over 30 years has made him widely acclaimed, particularly for his research and expertise in managing RLS. His commitment was recognized in 2017 when he received the RLS Foundation’s prestigious Ekbom Award.

Q. When did you initially discover the RLS Foundation, and how did you become involved?

A. I believe the year was 1992. Dr. Art Walters, my colleague Dr. Richard Allen and I met with Pickett Guthrie in Washington, DC. This was right around the time Mrs. Guthrie formed the idea of establishing an RLS Foundation. By the time it was fully formed, I was an active member of the Scientific and Medical Advisory Board. I eventually became chair of the Scientific and Medical Advisory Board, and am currently in my fourth year and second term as chair.

Q. As chair of the Scientific and Medical Advisory Board, can you describe some of your responsibilities?

A. As chair, I primarily maintain an advisory role, assisting those who maintain the daily functions of the Foundation. I am responsible for the final review of any newly revised medical publications, alongside other members of the SMAB, as well as for suggesting new topics of clinical importance. More generally, I have oversight of ongoing initiatives within the SMAB, including communication with the RLS Foundation Brain Bank, reviewing grants and advising the Board on public health issues. I am actively involved in contributing to the educational components of the Foundation such as the monthly webinar series, the Virtual Summit, the National Patient Symposium and the Public Policy Initiative.

Q. Throughout your educational and professional achievements, what inspired your special interest in RLS research?

A. “Serendipitous” comes to mind. When I began working at Johns Hopkins, I was initially set to design and run the acute stroke program, which I did for numerous years. Part of my responsibilities included working in the sleep clinic where sleep research was in its earlier stages. About three years prior, carbidopa/levodopa had begun to be prescribed for RLS, so we were seeing many RLS patients with signs of augmentation. Some of the very first RLS patients I treated were augmented, so I became heavily involved with research relating to dopamine agonists and this side effect. We started to develop a reputation for treating RLS, and after about 10 years I became involved full-time with the sleep clinic. I am now the director of the certified RLS Quality Care Center at Johns Hopkins.

Q. What accomplishments or successes are you most proud of from your involvement with the SMAB?

A. One of the important accomplishments I’ve witnessed throughout my involvement is helping to establish an identity and a direction for the RLS Foundation. When Karla Dzienkowski became the executive director, she asked me to become chair of the SMAB. This was an opportunity to work with someone who was passionate about developing clear objectives and upholding the values of the Foundation. I am proud to have played a small role in successfully building and strengthening the organization, which is truly the only hope for some RLS patients.

Q. What are some of the established goals the SMAB has in the foreseeable future?

A. We would like to increase the availability of grants for those who are doing research in areas pertinent to what we believe contributes to the pathophysiology of RLS. I consider this one of my primary roles moving forward. The second goal we have set is to advance our educational outreach to a larger audience. It is imperative to reach not just the neurologists and sleep specialists, but also the primary care physicians to educate them on the clinical and scientific aspects of RLS. While we have made great strides, there is still more work to be done.

Q. Beyond RLS, you are also published in endocrinology and internal medicine. Do you find that your research intersects and if so, in what way?

A. My PhD was involved with the endocrine system, looking at behaviors and brain chemistry. My first eight to 10 years at Johns Hopkins included stroke research; however, my broadest interest was focused on sleep medicine – trying to get a more in-depth understanding of sleep-wake biology and clinical indications. There is great depth to sleep research and understanding the true biological nature of sleep, such as why we sleep and the value of sleep. The framework of RLS research exists within the framework of sleep biology. I am extremely proud of the progress made by many of our researchers on the RLS Foundation SMAB to unlock the mysteries of RLS and find better treatments.

Good Sleep Hygiene: More Than Just a Bedtime Routine

Sleep hygiene is always a sensitive subject when you have an underlying sleep condition that stops your sleep in its tracks. Sleep hygiene is not simply about crafting and sticking to a bedtime routine; sleep hygiene encompasses your daytime habits, in addition to your evening and nighttime habits. In this article, you will learn the science of how sleep works, the effects of poor sleep on overall health, how your internal circadian clock works and some helpful tips on how to achieve better sleep. This will give you some insight into the importance of maintaining and implementing a healthy sleep-wake schedule.

Studies have shown the tremendous complexity that is “sleep” and how it affects virtually all body systems. Lack of sleep in adults has been correlated to a broad range of negative health consequences that include cardiovascular problems, compromised immune function, insulin resistance, higher risk of obesity, cognitive dysfunction and mental health problems. Sleep is an essential biological function, and it is a time for your brain to restore and heal after a long day.

SLEEP ARCHITECTURE

When you first drift off to sleep, there are almost immediate changes in both the brain and the body. Your body temperature drops, brain activity goes down, your heart starts beating slower and your respiration slows.

There are four different sleep stages that you experience each night. The first three are categorized as non-rapid eye movement (non-REM) sleep, and the final stage is REM sleep. Stage one occurs just as we fall asleep. It is very light sleep and when woken up during this stage, most people will not be sure that they were actually asleep. Stage one sleep is what allows people with sleep apnea to take a breath again. When someone stays in stage one sleep, which is non-restorative sleep, they are often very sleepy in the daytime. This does not happen to people who have lots of stage two sleep.

When you transition into stage three, you experience some of your deepest sleep as your muscles relax and your brain activity slows. Researchers believe the recuperation of the body and brain happens at this time. Stage three sleep varies dramatically with age. Children may spend 30% of their sleep in stage three, while seniors may have little or no stage three sleep.

REM sleep is the fourth stage of sleep, lasting about 10–60 minutes in short episodes that increase in duration towards wake time. In REM sleep, activity in the brain and most of the body pick up significantly. The skeletal muscles experience temporary paralysis. The REM sleep stage is often believed to be critical for the brain, enabling important functions like learning and memory.

Sleep architecture is the structure of a person’s stages of sleep and cycles throughout a night. Each stage is essential to a person’s overall sleep architecture, which affects sleep quality.

THE MASTER CLOCK IN THE BRAIN: BREAKING DOWN CIRCADIAN RHYTHMS

Circadian rhythms are 24-hour cycles that coincide with the body’s internal clock, which executes essential functions and processes throughout the body. The most commonly known and important circadian rhythm is the sleep-wake cycle. The body’s master clock is directly impacted by the surrounding environment. This is why circadian rhythms are tied to the cycle of day and night.

The hypothalamus, a part of the brain, is home to the suprachiasmatic nucleus (SCN), which is highly sensitive to light and acts as a cue for brain signals to coordinate the internal clocks in the body. There are other cues that can affect the master clock, but light is the most powerful stimulus. During the daytime, exposure to light causes the master clock to send signals that generate alertness. As the day winds down, the master clock initiates the natural production in the brain of the hormone melatonin, which promotes sleep.

START SMALL AND WORK YOUR WAY UP

There are many ways to improve your sleep hygiene and cultivate healthier sleep. There is no one-size-fits-all approach. It is important to determine what works for you and implement tactics that fit your lifestyle. The Sleep Foundation has broken down sleep hygiene tips into four categories to make them more approachable.

1. Transform your bedroom environment:
• Choose a mattress and pillow that ensure your comfort and promote relaxation. Find a favorite pillow and comfortable mattress that will ensure a good night’s sleep.
• Get good quality bedding that is comfortable to the touch and will help you maintain a temperature comfortable to you throughout the night. Bedding such as a new mattress or pillow is key to promoting sleep. There are sheets and mattresses that have a cooling or warming effect.
• Reduce light disruption. A cool, dark, quiet environment is conducive to sleep. Blackout curtains can help achieve a darker environment. Earplugs and a sleep mask are other items that can help to limit light and sound in the bedroom.
• Keep noise to a minimum to elevate your sleeping. Try noise-canceling headphones, ear plugs, or machines or phone apps that create ambient noise (white, purple, rain, etc.).
• Decide an ideal room temperature, since being too hot or cold can distract you from a good night’s rest although it is known that people tend to sleep better in cooler environments.
2. Improve your sleep schedule:
• Try to go to sleep and wake up at the same time every day, even on weekends. It is nearly impossible to get accustomed to a sleep routine when you are waking up at different times. Consistency is vital to maintain healthy sleep and the wake time consistency is much more important than bedtime.
• Be wary of naps. If you nap for too long or too late in the day, there is a risk of disruption to your sleep schedule. If you enjoy a nap during the day, no worries! Try to nap after lunch in the early afternoon; it’s proven that a 20-minute nap is ideal. However, for patients with significant bedtime insomnia, napping should be discouraged.
3. Cultivate a bedtime routine:
• Don’t just jump into bed. Winding down for approximately 30 minutes can help you drift off to sleep with ease. Reading, stretching, listening to soothing music or doing relaxation exercises can help put your mind and body in the mood for a great night’s rest.
• Follow a set bedtime routine. Habitual actions are correlated to specific cues that tell your brain that you are almost ready for sleep.
• Turn down the lights. Bright lights can affect the production of melatonin in the body.
• Adjust devices, tablets, cell phones and laptops. These light- emitting devices can keep your brain awake. The more interactive the device, the bigger the impact on falling asleep. Keep the blue light down and change to orange/red light for 3 or more hours before bedtime. Most LCD screens (cell phones, computers) have a setting option to turn the light red and lower in the evening. It is recommended to disconnect at least 30 minutes prior to climbing in bed.
4. Create healthy habits during the day:
• Get daylight exposure. Natural light in the morning and early afternoon supports consistent and high-quality sleep by driving your circadian rhythm and aligning your sleep-wake pattern. For those unable to get outdoors, there is a bright light therapy box to simulate natural light.
• Try to incorporate movement into your daily routine. Activity promotes health across the board and can help make it easier to sleep at night. A short 20-minute walk can transform your day and help you get to sleep at night but don’t exercise too close to bedtime as that can hype your brain up.
• Reduce the amount of caffeine you consume after lunchtime. Caffeine can take up to seven hours to be fully out of your system.
• Plan mealtimes. It is best to avoid heavy meals two to three hours before bedtime to avoid still digesting when getting ready for bed.
• Reduce alcohol consumption in the evening. Alcohol can make it easier to fall asleep but has been shown to disrupt sleep later in the night when you are in the important stages of REM sleep. Also, avoid caffeinated beverages too close to bedtime.
• To cultivate a healthy relationship with sleep, try to limit the activities in bed to sleeping and sex only.

TIPS FOR WHEN YOU CAN’T FALL ASLEEP

Whether you have just crawled into bed or woken up in the middle of the night, here are some tips to help you fall asleep: 1. Don’t toss and turn in bed in the hopes of getting to sleep. This can create a connection in your brain between frustration and your bed. Try walking around for a couple of minutes, reading in low light, or doing something relaxing or very boring before returning to bed when you feel sleepy. 2. Avoid checking the time. Constantly checking the time can increase anxiety about sleeping and in turn make it harder to fall back asleep. 3. Record your sleep. A sleep log or journal can help identify patterns that may be hindering your sleep. If you are implementing new sleep hygiene tactics, track the changes and see how well they are working for you. A sleep diary may help your doctor get a better idea of your day-to-day habits and a clearer picture of your sleep.

To benefit from these sleep tips, it is essential to incorporate them into your daily life. It can be overwhelming to completely restructure your relationship with sleep. Start small and work your way up. Stick with your changes. You may not see the benefits right away, and that’s okay. Maintaining your plan may very well pay off over time.

Life happens, so you may not be able to follow your curated routine every single day. Give yourself some grace and set realistic expectations that are attainable for you!

Sweet dreams.

Should Cannabis be Considered an RLS Treatment?

Research examining the potential role that medical cannabis can play in treating medical conditions and sleep disorders is increasing within the United States. Cannabis is a plant containing active ingredients that is classified as a psychoactive drug when ingested, inhaled, or applied.1 Under federal legislation, cannabis is illegal and defined as a Schedule I drug: however, states have individual laws regarding its recreational and medical use. While medical marijuana is not among the approved treatments for RLS, there are individuals who have anecdotally had success in managing symptoms using the drug with or without the supervision of their healthcare providers.

WHAT IS CANNABIS?

Over 450 chemical compounds have been identified in cannabis. The two most commonly referred to compounds, or cannabinoids, are delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). The human body produces endocannabinoids naturally as an important part of regulating the circadian sleep cycle and maintaining homeostasis, a state of balance among biological systems in the body.2 These endocannabinoids bind to cannabinoid receptors in the body, primarily CB1 and CB2 receptors. These are found predominantly in the central and peripheral nervous systems and in immune tissues.1 When THC or CBD are introduced to the body, these cannabinoids interact with the endocannabinoid receptors differently, producing distinct reactions.

DIFFERENCES IN CLASSIFICATIONS OF CANNABIS

THC is the main psychoactive component in marijuana and interacts primarily with the brain’s CB1 receptors, eliciting a euphoric or “high” sensation. THC can be used medicinally to prevent nausea that occurs in chemotherapy patients, promote appetite and can help treat certain medical conditions. Some of the adverse effects include short-term memory loss, increased heart rate, loss of coordination, and hallucinations. Longer term, there is a risk of addiction, along with impaired cognition and brain development.

CBD does not produce the same euphoric feeling as THC. How CBD interacts with cannabinoid receptors is not well understood, but studies suggest it can provide relief from anxiety or pain. There are no significant neurological effects associated with CBD, and it can help increase sedation to help insomnia. Some of the adverse effects include decreased appetite, fatigue, drowsiness and an increased risk of infection.2

CANNABIS AND SLEEP

A study conducted in 2017 looked at the effectiveness of medical cannabis as a substitution for pharmaceutical options for pain, anxiety and sleep.3 Of the 1,513 participants who took part in the survey, 76.7% indicated the ability to reduce their regularly prescribed opioids after incorporating medical cannabis into their management plan. Furthermore, 65.2% reduced their sleep medications. Other studies show that administration of THC is beneficial on a short-term basis, but developing tolerance and withdrawal can eventually cause sleep disturbances.

Although drowsiness is a side effect of CBD, findings vary on its effectiveness for treating sleep disorders. CBD was used in a large case study that observed its efficacy in a group of 72 adults presenting with anxiety, of which 25 suffered from inadequate sleep.4 Most patients were prescribed 25 milligrams, although those with severe cases were prescribed 50-75 milligrams. For those with anxiety, the capsule was administered early in the day, and for those with sleep concerns, it was given in the evening. Sleep quality was documented according to the Pittsburgh Sleep Quality Index. In the first month, the quality of sleep improved in 66.7% of participants, while 25% experienced worsening sleep issues. These numbers fluctuated in the following month when only 56.1% reported an improvement in sleep and 26.8% reported worsening problems. Though sleep scores demonstrated a mild improvement, CBD showed a more consistent benefit for anxiety than with sleep issues.

CANNABIS AND RLS

There are very few academic studies that investigate the correlation between RLS and the effects of medical cannabis directly. Observational data published in 2020 by Dr. Imad Ghorayeb examined twelve predominantly male RLS patients, ages 31 to 69.5 Eleven of the twelve participants reported an improvement in RLS symptoms after smoking cannabis or using CBD oil in addition to their current treatment medications. These improvements ranged from 60% to 100%, with the last participant noting no improvement. Due to concern about psychoactive effects and the potential risk for abuse, three of the individuals switched to CBD oil, noting the increased effectiveness of smoking cannabis versus a topical treatment. This data shows the need for further clinical trials and research on the efficacy of cannabis and CBD.

The observations of one of the RLS experts based in California, where marijuana has been legal and widely used for many years, is that inhaled marijuana most often relieves RLS symptoms after only 1-3 inhalations. This effect typically onsets within less than 5 minutes but only lasts 1-2 hours. Edible marijuana, even in high doses is rarely effective in relieving RLS symptoms. CBD may sometimes promote sleep but does not improve RLS symptoms.

CONCLUSION

Cannabis has been cultivated by numerous cultures, spanning centuries for its medicinal properties. Based on a lack of clinical data, further research is required before cannabis can be recommended for routine use for RLS. If you are thinking of integrating cannabis into your treatment, be sure to consult your doctor, as it can interact with other drugs. There are various forms of cannabis available including vapor, smoke, edibles, plant resin and oil extracts. Consult with your physician to determine which method and dosage may be right for you.

SOURCES:

1 Kaul M, Zee PC, Sahni AS. “Effects of Cannabinoids on Sleep and their Therapeutic Potential for Sleep Disorders.” Neurotherapeutics. 2021 Jan;18(1):217-227. Doi: 10.1007/s13311-021-01013-w. Epub 2021 Feb 12.

2 Bainbridge, Jacqueline Pharm D. FCCP, MSCS, FAES. “Medical Marijuana/ Cannabis: The Proof is in the Pudding” Webinar. 2022.

3 Piper BJ, DeKeuster RM, Beals ML, Cobb CM, Burchman CA, Perkinson L, Lynn ST, Nichols SD, Abess AT. “Substitution of medical cannabis for pharmaceutical agents for pain, anxiety, and sleep.” J Psychopharmacol. 2017 May;31(5):569-575. doi: 10.1177/0269881117699616. Epub 2017 Apr 1 PMID: 28372506.

4 Shannon S, Lewis N, Lee H, Hughes S. “Cannabidiol in Anxiety and Sleep: A Large Case Series.” Perm J. 2019;23:18-041. doi: 10.7812/TPP/18-041. PMID: 30624194; PMCID: PMC6326553.

5 Ghorayeb I. “More evidence of cannabis efficacy in restless legs syndrome.” Sleep Breath. 2020 Mar;24(1):277-279. doi: 10.1007/s11325-019-01978-1. Epub 2019 Dec 9. PMID: 31820197.