New Support Group Leader in Texas

The RLS Foundation is pleased to welcome Lisa Marie Smith as the new support group leader in Brazoria County, Texas. Thank you, Lisa, and welcome!

Lisa Marie Smith (Brazoria County, Texas)

Looking back over the years, I realize that restless legs syndrome has been a part of my life since I was a young girl. Simple, every day activities such as car rides, going to the movies, sitting in class, or lying in bed trying to sleep were challenging for me.

I didn’t understand what was happening, why I felt like I wanted to jump out of my skin, why I couldn’t just be still, why no one around me seemed to have these same problems.

Through the years, the RLS slowly progressed to the point that I am now taking medication three times a day just to cope with the symptoms.

There have been times I felt like no one in the world could possibly understand what I was feeling, but through the RLS Foundation I have learned that there are others who suffer just as much, others who understand what I’m going through. I want to help those who are struggling with RLS by providing information, guidance, and resources to help them cope. I want to be an encourager and a support that they can turn to.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Pennsylvania

The RLS Foundation is pleased to welcome John Alexanderson as the new support group leader in Doylestown, Pennsylvania. Thank you, John, and welcome!

John Alexanderson (Doylestown, Pennsylvania)

I was a Prudential employee in New Jersey for 30 years, and also worked as a school bus driver in Hunterdon County, New Jersey, and Bucks County, Pennsylvania for 10 years. I am currently a radio DJ (Swing and Oldies) on WRDV in Hatboro, Pennsylvania, and WOVV in Ocracoke, North Carolina. My wife and I have two daughters and two granddaughters so far. I am up at 5:20 am most days to swim laps at the YMCA in Doylestown.

I have had restless legs syndrome at least since college, more than 50 years ago. But, like many of us with RLS, I didn't know what it was until about 10 years ago. I found that others are amazingly uninformed about RLS, and I want to spread the word and empower others in the "club" to activism, education, and assurance. I refuse to suffer from RLS, but I realize what a burdensome personal issue RLS can be for we the "Chosen."

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Ohio

The RLS Foundation is pleased to welcome Rosemary Stader as the new support group leader in Columbus, Ohio. Thank you, Rosemary, and welcome!

Rosemary Stader (Columbus, Ohio)

My father suffered from restless legs syndrome for a long time. Unfortunately, years ago I did not understand the disease like I do now.

I first experienced RLS in my late 40s. For about eight years it was managed very well by pramipexole (Mirapex). When it started to get worse, I went to several physicians who kept increasing my dosage of pramipexole. No one, including me, knew that I was experiencing augmentation. I was on a high dose of medication, and my RLS was out-of-control. Finally, I found a physician who understood augmentation and knew how to treat me. My symptoms are now about 95 percent under control, and that is good enough for me!

I decided to become an RLS support group leader to advocate for the use of opioids to treat severe cases of RLS and to help educate others about the disease. Everyone with RLS should read the information and listen to the webinars available on the RLS Foundation website at www.rls.org. We must be our own advocates because so many people do not understand the disease.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in North Carolina

The RLS Foundation is pleased to welcome Erika Hallerman as the new support group leader in Cary, North Carolina. Thank you, Erika, and welcome!

Erika Hallerman (Cary, North Carolina)

Restless legs syndrome began to chronically affect my life just over three years ago. Confirming a diagnosis was a laborious process that required a great deal of patience and persistence. It is easy to become a victim of this neurological disease. I’ve lost count of the number of sleepless nights and have spent many days wondering why I was chosen to suffer in such a way.

There is currently no cure for RLS, so I knew that learning to live with it was my only option. I tried to find a support group along the way but was unsuccessful. The battle to live a better quality of life was much more difficult than I anticipated. After finally discovering the resources embedded in the RLS Foundation, I decided to start a support group in North Carolina.

The focus of my life has been to find a way to live a more comfortable life and help those who suffer with this condition during the process. Most days are hard work for me, but at the end of the day, the struggle is worth the challenge. I hope to share my strength with those who suffer from RLS.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Two New Support Group Leaders in Michigan

The RLS Foundation is pleased to welcome Linda Tuomaala as the new support group leader in Oakland County, and Kathleen Nolan as the new support group leader in Ann Arbor. Thank you both, and welcome!

Linda Tuomaala (Oakland County, Michigan)

RLS has been a part of my life for over 30 years. While seeing a neurologist years ago, I mentioned the difficulty sleeping due to the strange sensations in my legs and their jerking at night. I learned that these symptoms had names: RLS and PLMD. I found there was little information about it and a lack of awareness by people in general. When in social situations, I would ask others if they experienced this. None had and many had never heard of it. There was definitely a need to expand awareness of what RLS and PLMD are and how they affect a person's life.

After retiring from 27 years of teaching, I found that I had more time to volunteer, but needed something that I felt a connection to. From the RLS Foundation Facebook page, I learned there were support groups, but none in Michigan. (There are now two there.) This was a perfect fit. My purpose was two-fold. One, holding support group meetings that would bring people together to share information. In the process I would learn from them, too. Secondly, by being involved with the RLS Foundation, I would learn about current research.

Progress in dealing with RLS and PLMD happens when both patient and doctor have available to them the most current information. As an RLS Foundation volunteer support group leader, I will do what I can to facilitate that process. Already from the few meetings that my group has held, I have learned how helpful it is to meet, share information and support one another.

Kathleen Nolan (Ann Arbor, Michigan)

I decided to become a support leader because there were no meetings in Michigan, and I felt it was important to have group support to discuss RLS symptoms and management. It is also a syndrome that is very misunderstood and many think it is not real. My hope is that with a group in southeast Michigan, both knowledge and management can be shared.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Aiken, South Carolina

The Foundation is pleased to welcome Andrew Tershak as the new support group leader in Aiken, South Carolina. Thank you, Andy, and welcome!

I have suffered from RLS issues for over 30 years and was happy to hear about, and be able to attend, the first RLS Foundation patient meeting in St. Louis in 1992. The meeting gave me hope that RLS was becoming a recognized medical problem.

Over the years since then I have strived to be creative in how I handled the day-to-day RLS occurrences, though there have been challenges in nearly every aspect of life. In my professional executive position, symptoms were particularly vexing in meetings, travel and the expected social interactions. Even with an understanding family, daily obligations and social outings like movies, eating-out and neighborhood gatherings, were threatened by restrictions of time and movement. While my professional and social life was impacted by RLS symptoms, sadly the well-meaning physicians and surgeons who treated me did not seem to comprehend the implications of RLS. The hope I found at that first Foundation meeting did not seem to transfer to sufficient medical education for my treating professionals. And, unfortunately, my ability to link up with a support group was limited by distance and time.

Just recently I retired and felt this was the ideal time to put together a support group in the area where I live. By working with others, I hope the group will offer an environment where individual experiences can be shared, community awareness of RLS improved, and the medical community will become involved. Our local medical community includes hospitals and numerous outpatient facilities employing physicians, surgeons, physician assistants, nurses, intensive care and other support personnel.

Taking actions that help RLS sufferers support each other, and spreading the knowledge of RLS to the medical community and the general public, is something I felt necessary when I attended that Foundation meeting in 1992. Now I feel I have the time to contribute to that goal.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

New Support Group Leader in Portland, OR

The Foundation is pleased to welcome Donna Rivers as the new support group leader in Portland, Oregon. Thank you, Donna, and welcome!

“My desire to become a support group leader for the RLS Foundation is directly related to my personal struggle with the disease. During my longstanding battle with RLS, I have concluded the public, as well as some physicians, lacks knowledge regarding RLS and periodic limb movement disorder (PLMD).

"Until I found the RLS Foundation, I felt very alone in my suffering. I am grateful beyond words that the Foundation is on the front lines of support, education and research. I recently retired from a 34-year career in nursing. I enjoy learning and helping people, as this has been an integral part of my life. I hope my volunteer role will benefit other RLS/PLMD sufferers in the greater Portland metro area.” – Donna Rivers

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Thank You, Jan!

After over two decades of service, Janice Schneider is retiring as the support group leader for Southwest Ohio. She dedicated countless hours to her support group and others seeking help, and her passion for providing support to those suffering was unparalleled.

Jan will be staying on with the Foundation as a volunteer contact, so she will be available to continue to provide support to those seeking help via phone or email. Thank you for your continued support, Jan!

Read below for a special farewell message from Jan:

I have been a facilitator for the SW Ohio RLS Support Group for over 21 years. The reason I was willing to help with a support group was that I care for people and what they are going through. I hope and pray that in some small way I may have made a difference in the lives of those I've had the opportunity to touch at the meetings or by phone. I know my life has been enriched by all I have interacted with.

The RLS Foundation has been great to work with, and I thank the Kettering Medical Center for providing a medical advisor and a meeting space for us these many years.

My hope is that the medical profession sees the seriousness of restless legs syndrome, and provides more training for doctors coming out of medical school. [I also hope] that funding will continue for research to bring a cure for such a debilitating disease. I look forward to keeping up with all that is going on through the NightWalkers newsletter, which I look forward to receiving each quarter.

Blessings,

Jan Schneider

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Thank You to All of Our Volunteers!

On behalf of the RLS Foundation boards and staff, we want to thank each of our volunteers for all the contributions they have made in supporting the community of RLS sufferers. The compassion and hope they provide has resulted in positive feedback, and we are incredibly fortunate to provide this volunteer program to those who are looking for help, hope, and sometimes just an ear.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada, not to mention a group of dedicated volunteer discussion board moderators. All of these individuals contribute to achieving our goal of spreading RLS awareness and providing support to those suffering with this disease.

"Spreading the word is crucial to increasing the awareness of this often misunderstood yet complex disease suffered by so many," Southern California RLS Support Group Leader Susan Schlichting said. "This awareness will aid in furthering the Foundation's goal of finding a cure. Volunteering is a way for me to take personal responsibility for my health while facilitating others to do the same."

We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please submit your completed volunteer application through the volunteer page on our website, by email, or send to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Click here to find a support group near you. Stay up to date with upcoming meetings in the "Find Support" section of our website, or on our Facebook page.

Meet the New SGLs of 2016: The Foundation Welcomes Four Volunteers

At the heart of the RLS Foundation community is a network of volunteer support group leaders who give time, knowledge and a compassionate ear to others who struggle with RLS. Roughly 80 individuals across the U.S. and Canada provide support through face-to-face meetings, phone calls and the Foundation’s online discussion board.

The RLS Foundation is pleased to welcome four new support group leaders this past year! Read more about Karen, Charlotte, Bob and Sheila in their testimonials below. To all who volunteer with the Foundation, we thank you!

Shiela Richards (Ventura/San Fernando Valley, California)

What does “insidious onset” mean? Why am I having this excruciating pain within 5-15 minutes after I get into bed but I don’t have the pain during the day? Is this related to the plantar fasciitis that I have had for the past 6 years? The pain is keeping me up at night, I am walking the floors and stretching to get some relief from my pain which is a 15 on a 1-10 pain scale and I can’t remember my passwords at work because I am so exhausted!!! Oh yes, peanut butter has become my comfort food at 1:15 a.m.

This is where I was approximately 3 years ago when my symptoms of excruciating pain in my legs, sleepless nights, mood swings, exhaustion without being able to sleep and forgetfulness began. After trying to remedy the symptoms myself with over the counter meds and supplements, exercising more, then exercising less, I began searching for “a diagnosis” so that I could get “a cure or just relief”.

I started with my internist who did blood work, which led to an endocrinologist for Graves’ disease (Hyperthyroidism) which could cause leg pain. Blood work also showed low Ferritin (iron storage) and Hemoglobin which resulted in a visit to a gastroenterologist who ruled out internal bleeding and resulted in a nightly dose of iron. Next was a visit to a neurologist for an EMG to rule out any issues coming from my low back. Negative!!! Lastly, I was referred to Dr. Ronald Popper who is a Sleep Disorders Specialist in Thousand Oaks, Ca who understands RLS and has helped me tremendously with simple remedies so that I can sleep 7-8 hours/night, control my nighttime pain and regain my happiness and optimism.

My personal life was also being affected by this “insidious onset” of pain. My husband tried to be understanding and was concerned when the Ambien that I was taking was helping with the pain and sleep but was making me into a person that he didn’t know anymore. My mother thought I was exercising too much and not understanding that exercise had always been “my therapy” in the past. My social life was affected because I was too tired to make plans for any social get together beyond a few hours.

My husband refers to me as “the cheerleader” because I have a talent of offering a listening ear to others, coming up with a “plan” and helping to implement “the plan”. I felt that I was changing and I desperately needed “support” of my own. I contacted the RLS foundation to learn that there wasn’t a support group from Long Beach to Santa Barbara (approx. 97 miles). This is when I realized that if I need support, then there are other people within 97 miles that could benefit from a support group that understands the symptoms, can talk about them freely and can help each other with direction and eventually successes. After I was accepted by the RLS Foundation as a group support leader I connected with Caroline Chamales who is the group support leader in San Diego and attended her support group which met at Scripps in La Jolla. I walked out of the 1 ½ hour meeting feeling energized and hopeful.

Not only did I learn a tremendous amount about RLS presented by a neurologist and sleep disorders specialist but I met some extraordinary members of the population that suffer with RLS and some of their family and friends who came to show support. The experiences that I had for 3 years were nothing compared to those that had been suffering for possibly 10, 20, 30 and yes 40 years but were determined to find relief and eventually a cure for RLS.

I am thankful to Chiara at the RLS Foundation for giving me the opportunity to gather a group of people together who experience RLS with Medical professionals who understand the life changing symptoms and treatments for RLS. There was a reason that Caroline Chamales came into my life at the right time to share her positive experiences with the RLS Foundation and their outreach program.

Karen Rodier (Ashburn, Virginia)

I first attended a restless legs syndrome (RLS) support group about two years ago while living in Pennsylvania. I traveled over an hour each way to join the group to learn more about my disease. I was impressed with the other participants and the leader’s commitment. I decided then that I wanted to try to bring together people with RLS once we settled in Virginia.

Several months later in Virginia, two women attended the first support group meeting I held. Neither of these women had ever spoken with anyone else with RLS, despite having suffered with RLS for many years. During the meeting, we briefly discussed our RLS journeys, shared tips we had learned, and heard an educational program on augmentation developed by the Foundation.

The meeting was not about me, the person/leader, but about the group’s interest in people with RLS and the Foundation’s commitment to bringing individuals together so that no one feels alone. We are all trying to manage our conditions the best we can.

Meeting others with RLS is an important way to give ourselves the gift of time, talk with others and examine new strategies to try. As a restless legs syndrome support group leader, I don’t have all the answers, but I know whom to call and how to direct participants to the many written and online resources at the Foundation. My hope is to offer more support group meetings in my area so that individuals with restless legs syndrome will know, “You are not alone”!

Bob Harnett (Chicago, Illinois)

I had always had trouble falling asleep and every once in a while I would find myself tossing and turning trying to get comfortable in bed. However about five years ago my symptoms got much worse. My doctor suggested I take a sleep study, which I did and the results showed that I suffered from sleep apnea, insomnia and restless legs syndrome (RLS).

My reaction was WOW three strikes, and then I thought OK well what do I need to do to get cured? Like a lot of people I then found out how little is known about sleep disorders and that there are no cures. But there are ways to manage each of these aliments.

For me I find that my RLS symptoms are by far the worst impediment to falling asleep and the problem I worked on the most with my doctor to manage.

Since we live in the internet age I began searching for information related to RLS and that is when I came across the RLS Foundation website and began to learn more about RLS from a reputable source.

When first diagnosed I think people tend to think they are the only ones with a particular problem, so just knowing that there is a support group available is reassuring. I found that the RLS Foundation was providing useful information that was matching the information I was receiving from my doctor. Some of the information I was finding on the WEB was not as helpful.

I had seen in the NightWalkers newsletter that there were actual support groups that held meetings and provided information and support for those who suffer from RLS. Since I live in the Chicago metropolitan area I was surprised to find out that there was not a group anywhere near where I lived.

I had thought about volunteering to become a support group leader a few years ago, but then I got busy with other things and did not fill out the application, I guess I figured well someone else will do this. This year I found out that, “no one else” had started a group in my area, and I thought well why not me? I filled out the application, and met (via the phone) the staff at the RLS Foundation. I also contacted my doctor to get his input into the idea of starting a RLS support group.

Both the RLS foundation and my doctor’s office were enthusiastic about getting a group started in the Chicago area.

I have done so other volunteer work and I have always believed that volunteering is more about supporting the organizations goals and objectives and not being the star of the show. I’d much rather be the guy who supports the guy who’s the star and not the star myself. With that in mind I think of my role as the volunteer support group leader as the facilitator for the group. I can make so calls, setup a room, set out pamphlets, and let people know about the resources available through the RLS Foundation’s website.

Charlotte Slack (Austin, Texas)

My husband has suffered from RLS since he was a child. Our daughter also has RLS, and I very much want to help them and others in dealing with this insidious disease. I can’t say how many times we have stopped on the side of the road while one or both of them had to get out to walk around. NightWalkers is the perfect name for the RLS Foundation newsletter, as that’s what many RLS sufferers do. Sometimes my husband walks more than he sleeps.

A support group is like any other gathering of people with common interests. People gather for book clubs, exercise classes, bridge, wine collecting, politics, etc. For people with restless legs syndrome, a support group offers the opportunity to be with others who share this disease. Knowing we’re not alone can be amazingly uplifting. We’ll hopefully share common issues and learn what remedies work or don’t work. Our family has been part of support groups for two other diseases, and we know how valuable they are to our spirits.

As a child, my husband’s parents took him to the doctor about the pains in his legs. The doctor said they were “growing pains” and he would be fine. He never was. Some years ago, he was driving while listening to a call-in show on the radio. He wasn’t paying much attention to the show until he heard the words “restless legs syndrome.” He nearly wrecked. For the first time, he knew that his condition had a name and that others had the same thing. He saw his doctor, who did believe him and referred him to a neurologist.

Managing RLS is a constant balancing act, but simply knowing he has a recognized disease gives him hope. The Restless Legs Syndrome Foundation is our go-to source for reliable information. That’s how we learned about support groups!

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We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please send your completed application to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Or email Chiara@rls.org with your application form.

You Are Not Alone

An Online Community Available 24/7

With the stress that the holidays can bring, it's a comfort to know that you are not alone in your struggles with RLS. The RLS Foundation's discussion board provides an avenue for individuals to post anonymously about their symptoms, treatments and other coping strategies. It is a supportive, hopeful environment for those who are looking to share their RLS stories with others who know exactly what they're going through.

The discussion board is run by five Foundation volunteers who serve as moderators. Topic areas currently include:

Physical Treatments
Non-drug therapies (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc.

Non-prescription Medicines, Supplements, Diet
Substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances.

Prescription Medications
Prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Topic of the Year: Augmentation
The topic of the year 2015 for the RLS Foundation is Augmentation. Use this forum to discuss any issues associated with Augmentation

Special Populations: Pediatric, Pregnancy, Secondary, etc.
RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Help for Relationships
Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?

General Topics
For everything and anything else not covered in the other RLS/WED sections.

Everything Else... Just No RLS!
It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.

To get started, learn more about the simple, free registration here. Questions or concerns? Contact the discussion board moderators at rlsfmods@rlsgroups.org.

Remember posts and information on the discussion board are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.