NIGHTWALKERS SUMMER Gene Variant for Restless Legs Syndrome Discovered Variant provides insight into likelihood of developing RLS

A publication of the Restless Legs Syndrome Foundation NIGHT WALKERS I n s e a r c h o f a g o o d n i g h t’ s s l e e p Gene Variant for Restless...
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A publication of the Restless Legs Syndrome Foundation

NIGHT WALKERS

I n s e a r c h o f a g o o d n i g h t’ s s l e e p

Gene Variant for Restless Legs Syndrome Discovered Variant provides insight into likelihood of developing RLS The Restless Legs Syndrome Foundation is proud to announce the discovery of the first gene variant that contributes substantially to risk for restless legs syndrome (RLS). This study was supported in part by a grant from the RLS Foundation and was conducted by physician researcher and RLS Foundation Board member, David B. Rye, MD, PhD and his collaborators at deCODE Genetics in Reykjavik, Iceland. The results of this study, headed jointly by deCODE Genetics and Dr. Rye, of Emory University in Atlanta, Georgia appear in the online edition of the prestigious New England Journal of Medicine and will also appear in print in the August 16th edition of the Journal. Two editorials accompanying the article, as well as one appearing simultaneously in Nature Genetics, speak to the influential nature of this and corroborating findings in Germans and French-Canadians. These findings and the technology behind them are ground-breaking, not only to the RLS community, but to the entire field of medicine. The results of Dr. Rye’s and deCODE’s study revealed the discovery of a gene variant that appears to be the primary contributor to RLS. This discovery still allows for the possibility that additional genes might influence RLS in smaller ways. The variant is extremely common—nearly 65% of the population of Iceland and the southeastern United States

carry at least one copy of the variant. This finding explains why RLS is so common. In addition, the variant appears to be much less common in Asians (~35%), helping to explain the lower prevalence of RLS in Asia. To find this genetic variant, Dr. Rye and colleagues evaluated subjects with RLS who also had periodic limb movements in sleep (PLMS), unconscious movements of the legs during sleep that are measured objectively. PLMS are present in about 90% of people with RLS and are considered a typical expression of RLS. Rye and deCODE colleagues studied (1) RLS with PLMS subjects and (2) control subjects. They not only discovered this genetic variant but were able to replicate the findings in two additional subject groups: one in Iceland and one in the U.S. One way to assess the impact of the gene variant upon disease is through calculation of the “population attributable risk.” This is the proportion of RLS cases that would disappear if the identified variant were removed or replaced by what is present in the control population. According to the findings of this study, a conservative estimate is that 50% of all RLS with PLMS would disappear if this gene variant were eliminated. This discovery also provides new information about a person’s continued on page 2

SUMMER 2007 Inside NightWalkers

Ask the Doctor....................11 Bedtime Stories....................12 Support Groups..............16-17 In the News....................25-26 www.rls.org Fibromyalgia and RLS

Moonlight Walk for RLS

RLS Book Excerpt

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page 7

page 20

RLS News Cover Story continued from page 1

risk for developing RLS. Dr. Rye and colleagues discovered that the number of gene variant copies a person carries from birth influences his or her risk of developing RLS. One copy of the variant results in a nearly two-fold risk, and two copies of the gene variant results in as high as a four-fold risk for developing RLS. It is important to emphasize that having one or two copies of this gene variant does not mandate that a person will develop symptoms of RLS. According to Dr. Rye, “There remain medical, environmental and additional genetic factors that one is prone to in life that translate this risk into RLS symptoms. Examples include iron deficiency, kidney disease, diabetes, neuropathy, etc.—all factors that clinicians have long suspected to be associated with RLS.” The study clearly demonstrates that having two copies of the gene variant influences the severity of the condition. Dr. Rye’s study found that people carrying two copies of the variant have more severe symptoms as reflected in their number of periodic limb movements of sleep (PLMS). Lewis M. Phelps, Chair of the RLS Foundation Board of Directors, commented, “This ground-breaking discovery by Dr. Rye and his colleagues significantly advances our understanding of the cause of RLS and paves the way for both improved diagnostic methods and better treatment for those living with RLS.” “Fifteen years ago, restless legs syndrome was a little-known and often misunderstood condition,” Phelps continues. “People with RLS suffered severe disruption in their lives including chronic lack of sleep, debilitating fatigue, and inability to participate in activities that required prolonged sitting without movement, such as movies and airplane flights. Today, RLS is better understood and more frequently diagnosed accurately; improved treatments are also available. However, much remains to be done before we conquer RLS,” Phelps said.

This discovery is more than just a step forward. It represents a gigantic leap in our understanding of this complex disorder. While further research is needed to determine exactly how this genetic variant translates into RLS symptoms, understanding this mechanism will lead to better treatments, prevention, or a cure. Dr. Rye and colleagues have found David B. Rye, MD, PhD that the gene variant is more common in Icelanders with low iron—which has already been associated with RLS. Ongoing studies are examining the relationship of this variant to iron metabolism. The discovery also raises the question of whether genetic testing could now be used to screen for RLS. Since having one or two copies of the gene does not ensure the development of RLS, genetic testing to screen for RLS is not likely to see widespread use. However, Dr. Rye notes that genetic testing could be used to help assess RLS severity and develop treatment strategies for those who have already developed RLS. Testing could be particularly insightful in situations where the risk of RLS is already high such as kidney failure and in children where diagnostic tools are less well developed. This work was funded by the RLS Foundation and other private sources and will require increased investment to expand upon these seminal findings. The RLS Foundation has funded nearly 30 deserving grants, like Dr. Rye’s, which offer the opportunity to participate in advancing our understanding of RLS. “The Foundation is extremely excited to learn of the results of this study,” said Georgianna Bell, Executive Director of the RLS Foundation. “It is further encouragement to the Foundation and its members that the monies we are devoting to research are integral to the future of people living with RLS. As research advances, we come closer and closer to finding better treatments for RLS, the cause of RLS, and hopefully soon, a cure for this condition.”

A New Look for Our Website The RLS Foundation has unveiled its brand new website! While much of the content at www.rls.org is similar, you'll find new perks such as easier-to-navigate pages and a new search engine. In addition, our "Announcements" page is more up-to-date than ever and has the latest news about RLS. We are excited about this improvement and look forward to continuing to improve our site for new visitors and regulars alike. Spend some time browsing our new site and tell your friends and family about it as well. 2 NightWalkers

www.rls.org

From the Director’s Desk NightWalkers is the official publication of the Restless Legs Syndrome Foundation Board of Directors Lewis M. Phelps, Chair Eugene G. Sivertson, Treasurer Jacquelyn Bainbridge, PharmD Marilyn G. Butterfield Norean V. Dreier Karla M. Dzienkowski Bruce Ehrenberg, MD Douglas D. Fuhr Pickett M. Guthrie Janice E. Hoffmann Roberta Kittredge David B. Rye, MD, PhD David T. Sands Edward A. Shamah Medical Advisory Board Christopher J. Earley, MD, PhD, Chair Richard P. Allen, PhD Jeffrey S. Durmer, MD, PhD Diego Garcia-Borreguero, MD Wayne A. Hening, MD, PhD Clete Kushida, MD, PhD, RPSGT Kathy P. Parker, PhD, RN, NP, FAAN Penny Tenzer, MD Mary L. Wagner, MS, PharmD Robert J. Werra, MD John W. Winkelman, MD, PhD Marco Zucconi, MD Scientific Advisory Board James R. Connor, PhD, Chair Bruce M. Alberts, PhD Michael Brownstein, MD, PhD Marie-Francoise Chesselet, MD, PhD Christopher J. Earley, MD, PhD Emmanuel J. Mignot, MD, PhD William C. Mobley, MD, PhD Jacques Montplaisir, MD, PhD, CRCPc Pamela Pierce-Palmer, MD, PhD Neil Risch, PhD Joseph S. Takahashi, PhD Support Group Advisory Board Wendy Lowden, Chair Patricia Arthur Roger Backes Sally Breen Sherry Dagnall Margarette Fuhr C. Edward Murfin, Jr. Kathy Page Roger Winters Executive Director Georgianna Bell NightWalkers is published in the winter, spring, summer, and fall. “Ask the Doctor” questions, “Bedtime Stories,” address changes, contributions, and membership inquiries should be sent to: NightWalkers, RLS Foundation 1610 14th St NW Suite 300 Rochester, MN 55901 The RLS Foundation does not endorse or sponsor any products or services. ©2007 Restless Legs Syndrome Foundation Editor: Beth Osowski Medical Editor: Mark Buchfuhrer, MD, FRCP(C), FCCP Warning and Disclaimer Persons suspecting that they may have RLS should consult a qualified healthcare provider. Literature that is distributed by the Restless Legs Syndrome Foundation, including this newsletter, is offered for information purposes only and should not be considered a substitute for the advice of a healthcare provider.

www.rls.org

I

t was on February 22, 1997 that the first RLS Scientific Meeting was held at the National Academy of Sciences in Washington D.C. A decade ago, restless legs syndrome was anything but a household name. Because of this, the then five-year-old RLS Foundation decided to organize a meeting to spark interest in this relatively unheard of condition among top level researchers in other fields. It was actually at this meeting that the idea for a Scientific Advisory Board was born.

Since our first Scientific Meeting just over a decade ago, real progress has been Georgianna Bell made. Thanks to increased research in this once fledgling field, researchers Executive Director, RLS Foundation now understand that RLS correlates heavily with iron deficiencies in the brain’s substantial nigra, something they suspect inhibits proper functioning of the dopamine system. Scientists believe that the culprit is a so-called “iron regulatory protein” that in effect tells the brain it has plenty of iron when its iron stores are actually relatively small. And, as you read on page one of this edition of NightWalkers, scientists have recently discovered a gene associated with RLS. Those living with RLS will reap the benefits of these new findings. Today, excellent epidemiologic information has emerged identifying the exact questions a physician must ask to get an accurate diagnosis of RLS. In addition, two treatments for RLS have now been FDA approved, and others are pending. While a lot has changed since 1997, some things have stayed the same. For one, finding the cause and cure—and short of that, better treatments for RLS—remain top priorities for the RLS Foundation. We have also found that as in any other area of science and medicine, answering some questions generates new and better questions. In order to continue to progress the field of RLS research, these new questions must be answered. It is for these reasons that the RLS Foundation has begun plans for a second RLS Scientific Meeting, scheduled to be held in 2008. With guidance from our Scientific Advisory Board, we have decided to hold off on funding research grants this year as we take this opportunity to help re-establish priorities and focus on the most promising research areas available. On May 17, I met with Bob Waterman (former Chair of our Board of Directors), James Connor (Chair of our Scientific Advisory Board), and Karla Dzienkowski and Janice Hoffmann (members of the Foundation’s Board of Directors) to begin planning for this meeting. It is our hope that a second meeting will push the field of RLS even further ahead: developing new hypotheses for RLS, bringing new researchers into the field, developing research priorities, and articulating areas of focus for the RLS Foundation’s research program. To support this meeting, we will seek funds from the National Institutes of Health (NIH), corporate support, and support from Foundation members. You can count on us to continue our search for better treatments and ultimately a cure for RLS. You can also count on us to keep you up-to-date on the details of this meeting and other important RLS news. Until we find a cure,

Georgianna Bell Executive Director

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Fibromyalgia and RLS

Fibromyalgia and RLS Dr. Helene A. Emsellem, MD is a Medical Director for The Center for Sleep & Wake Disorders in Chevy Chase, MD. In this article, Dr. Emsellem discusses fibromyalgia, an important topic for many people with RLS. We would like to thank the National Fibromyalgia Partnership, Inc. for help in arranging this discussion. What is fibromyalgia? Fibromyalgia (FM) is a chronic condition characterized by generalized musculoskeletal pain, with multiple tender points, associated with clinical complaints of fatigue and non-restorative sleep. What is the cause of FM? FM does not have a clearly defined cause; specifically, it does not appear to be due to an infectious process or an environmental toxin. A genetic linkage has been suggested, but no clear inheritance pattern has been defined. Heightened central nervous system activity, especially in the sympathetic nervous system, has been noted in patients with FM, and some researchers have suggested that FM represents an abnormality of central sensory processing. Who is most affected by FM? FM, which has its peak age-of-onset in one’s 30s, 40s, or 50s, is reported much more frequently in women than men. Is FM the result of another condition? The onset of symptoms may follow a physical injury, illness, or psychological stress. Doctors have noted many overlapping syndromes in which symptoms consistent with FM have been seen including chronic fatigue syndrome, irritable bowel syndrome, temporo-mandibular joint disease, and interstitial cystitis. Patients with autoimmune rheumatologic disorders may be more likely to report symptoms of FM. In addition, depression and anxiety are often coexistent with FM. In addition to the nonspecific symptom of non-restorative sleep, RLS, periodic limb movements of sleep (PLMS), and to a lesser extent obstructive sleep apnea, may be reported more frequently in patients with FM than in the general population. How many people are effected by FM? The National Fibromyalgia Association estimates that FM may affect 5-7% of the population. What is the treatment for FM? Successful treatment of FM usually includes a multidisciplinary approach addressing the physical pain, psychological stressors, and impact of the disease on activities of daily living and lifestyle. A gradually progressive exercise program is key to success along with the judicious use of muscle relaxants and antidepressants to address both musculoskeletal pain as well

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as co-existent mood disorder and anxiety. In addition, cognitive behavioral therapy and supportive psychotherapy can be used to deal with precipitating stressors and pain management. What are some pain management strategies to help me deal with fibromyalgia? Pain management strategies may include the use of acupuncture, biofeedback and relaxation therapy, selected anticonvulsant medications with pain relieving properties, and opioid pain medication when warranted. A key element for managing FM is to follow a gentle, gradually progressive exercise program. Dietary interventions have been suggested, but there is little scientific evidence to support a role for dietary restrictions in the treatment of FM. Progress may be slow, but excellent outcomes are seen when all symptoms are addressed and precipitating factors eliminated. How does FM affect sleep? A cardinal symptom in FM is non-restorative sleep and daytime tiredness. Although there are overlaps with chronic fatigue syndrome, nearly all patients with FM have complaints of awakening in the morning feeling tired and unrefreshed. Research has shown that there is a distinct relationship between poor quality sleep and pain intensity. Some studies have also noted an increased incidence of alterations of circadian rhythms and the timing of the sleep-wake schedule in patients with FM. What are the connections between restless legs syndrome and fibromyalgia? RLS is seen in approximately one-third of patients with FM. A scientific explanation for the coexistence of RLS in patients with FM has not been determined. Nonetheless, diagnosing and treating RLS, when present, may improve FM symptoms. Drugs that increase brain dopamine levels, especially those binding to specific dopamine receptors such as ropinirole and pramipexole (both FDA approved for use in RLS) have been shown to have efficacy in improving the quality of sleep and restorative nature of sleep in FM. It is postulated that this positive effect is not only due to the improvement in the RLS but perhaps also due to a direct effect on mechanisms involved in the generation of FM symptoms. Patients with RLS should be aware of the symptoms of fibromyalgia. If you think you might have FM, it’s important to talk with your doctor. Identifying and addressing FM symptoms may help improve your overall feeling of well being and provide more restorative sleep. For more information on fibromyalgia see page 15.

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RLS Foundation News

Depression, Anxiety, and RLS Dr. Régis Langelier, PhD is a clinical psychologist and an RLS Foundation support group leader. According to the National Institute of Mental Health (NIMH),1 each year 9.5% of the population, or about 20.9 million American adults, will struggle with depressive illness. Depression is currently the fourth most disabling illness worldwide, and the World Health Organization predicts it will be one of the two leading causes of disability by the year 2020. It is also estimated that 30 million Americans suffer from an anxiety disorder which is characterized by symptoms of overriding apprehension or mental tension. The treatment of RLS is complex because it often involves other secondary issues.2 The impact of RLS on life, work, family, relationships, and sleep is well documented. It is depressing, anxiety provoking, and chronic. For many it forces life changes and creates challenges for travel, leisure time, and work. This article provides guidelines for a comprehensive treatment approach to RLS co-occurring with depression and anxiety. Symptoms of depression and anxiety are common in response to many serious medical conditions and are the two most common mental health problems seen in the general population. It is estimated that as many as 30% of people with a serious medical condition also have emotional trouble.3 Genetic predisposition, prolonged exposure to stress, or a traumatic event can cause depression and/or anxiety. RLS is also a significant predictor for struggles with anxiety and/or depression. Some might say that the anxiety was preexisting; others would disagree. Depression, anxiety and RLS: Current coping strategies A combination of psychotherapy (Cognitive Behavioral Therapy or CBT) and medication might be one of the most effective approaches to treat depression and anxiety when it is coupled with RLS. However, finding the right medication, dosage, and healthcare provider are still more art, luck, and location than science! Ensuring that we continue to take any medication is a challenge. (Most people are resistant or inconsistent.) For example, as many as 40% of older people4 (60 and up) taking antidepressants quit or repeatedly miss dosages because of side effects, memory problems, or cost. Finding the right medication for individuals with RLS is well described in a step-by-step problem solving procedure for physicians.5 When insomnia, low energy, diminished www.rls.org

concentration, hopelessness, and anxiety resulting from depression perpetuate and aggravate RLS, the choice of medication becomes more complex, especially since some of the most effective and widely used antidepressants can worsen certain aspects of RLS.6 Dr. Régis Langelier, PhD

Among the hundreds of studies on depression treatment, STAR*D1 is the largest by far for its seven-year duration and 3,671 patients who entered treatment at 41 sites throughout the United States. It was designed for “treatment-resistant” depression, i.e., when at least one treatment does not lead a person to become “symptom-free.” The study found that two-thirds of patients who complete from one to four treatment steps, such as trying a different medication or seeking psychotherapy, can reach remission which means they are symptom-free. However, it did not account for relapse, and comparisons between treatment strategies were limited.6 Also, although participants of this study had an average of three or more general medical conditions, data on whether they had RLS or not is not available. Anxiety, although as common as depression, still lags behind depression in terms of research and is often under-reported or undetected and undertreated.7 However, an ongoing research study sponsored by NIMH, “Primary Care Intervention Strategy for Anxiety Disorders,” is expected to be completed in three years. It compares CBT, the most extensively studied type of psychotherapy, to drug therapy. The forthcoming results should interest all of us in the RLS community. A note on electroconvulsive therapy (ECT) This is a rare treatment for depressed individuals. ECT is used especially in cases of psychotic or life-threatening depression – patients who are delusional, suicidal, or refusing to eat or drink.4 It is a controversial treatment for depression. For some patients the most troubling side effects are memory loss for the period surrounding the treatment and sometimes for longer.8,9 Like other treatments for depression, it is not a cure. Despite its effectiveness for some, it is a last resort consideration. How does psychotherapy help us cope? Treatment is often short (10-20 weeks) and is usually covered continued on next page

Summer 2007 5

RLS Foundation News

Depression, Anxiety, and RLS from page 5

by medical insurance. Make sure your mental health specialist (psychologist or psychiatrist): • Demonstrates an understanding of RLS. • Sets realistic goals and options linked to your concerns. • Understands how medication is important in regulating RLS. • Identifies and challenges distorted thinking patterns or persistent self-defeating thoughts and behavior that contribute to feelings of hopelessness and helplessness and helps to replace them with realistic, positive strategies for a sense of control. • Helps you achieve a renewed sense of well being by limiting pessimism and increases maintenance of regular routines, schedules, and activities that stimulate change rather than withdrawal. For example, volunteer at an RLS meeting, wear your RLS pin, or explain RLS to friends and family. • Helps you develop a capacity to dispel anxiety in constructive ways. For example, your health specialist could encourage you to join a support group or lead a support group. • Helps you learn more productive relationship shills. • Communicates with your primary care provider to control depression through agreed-upon protocols. Brief, focused psychotherapy may lessen the chance of future episodes of depression and anxiety. It will not cure RLS, but sleep may improve, and RLS will seem less formidable. The support of family or friends can play a crucial role in encouraging all of us because it can help us stick with treatment plans and practice special coping techniques and problem solving skills. Although an RLS support group is not a therapy group, it can be therapeutic and plays an important part in the support system by offering information, hope, and others’ shared thoughts. In conclusion, living with RLS is a difficult struggle. Depression, anxiety, and insomnia may be part of coping with this chronic, annoying condition. Psychotherapy helps decrease isolation, control anxiety, overcome depression, and reinforce resilience. It can teach you sleep strategies if your mental health provider understands RLS. Medication, with psychotherapy or support, is a common approach for the management of this complex issue. Careful consideration is required when choosing how to cope with RLS, and often some time is required before finding the right combination of therapy that works.

References 1.

2.

3. 4. 5.

6. 7.

8. 9.

National Institute of Mental Health (NIMH). “Questions and Answers about the NIMH Sequenced Treatment Alternatives to Relieve Depression (STAR*D) Study — Background. January 2006. http://www.nimh.nih.gov/healthinformation/stard_qa_general.cfm. Winkelmann J, Prager M, Lieb R, Pfister H, Spiegel B, Wittchen HU, Holsboer F, Trenkwalder C, Strohle A: “Anxietas tibiarum”. Depression and anxiety disorders in patients with restless legs syndrome. J Neurol 252:67-71, 2005. “Illness Plus Depression: It’s Common but Avoidable”. The John Hopkins Medical Letter. August 2005, pg. 3. “Depression in Old Age.” Harvard Mental health Letter. September 2003. Pages 5-7. Silber MH, Ehrenberg BL, Allen RP, Buchfuhrer MJ, Earley CJ, Hening WA, Rye DB: An algorithm for the management of restless legs syndrome. Mayo Clin Proc 79:916-22, 2004. Nelson JC: The STAR*D study: a four-course meal that leaves us wanting more. Am J Psychiatry 163:1864-6, 2006. Kroenke K, Spitzer RL, Williams JB, Monahan PO, Lowe B: Anxiety disorders in primary care: prevalence, impairment, comorbidity, and detection. Ann Intern Med 146:317-25, 2007. “Electrocunvulsive Therapy.” Harvard Mental Health Letter. February 2007. Vol. 23. No. 8. Pages 1-8. “Drug Treatment of Biopolar Disorder.” Harvard Mental Health Letter. May 2006. Vol 22. No 11. Pages 1-8.

Restless Legs Syndrome Foundation 1610 14th St NW Suite 300 • Rochester, MN 55901 Phone: 507-287-6465 • Fax: 507-287-6312 Email: [email protected] • www.rls.org

CANADA The Canadian RLS Foundation accepts donations and sends tax receipts for Canadian citizens. Please send to: RLS Foundation, Inc. 1581-H Hillside Ave, Suite #409 Victoria, BC V8T 2C1 In Canada, our nonprofit tax identification number is: 88018 7109 RR0001

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www.rls.org

First Annual Moonlight Walk for RLS Join the Restless Legs Syndrome Foundation in the First Annual Moonlight Walk for RLS! What and Why: A nationwide Moonlight Walk to support the RLS Foundation. This “do-it-yourself ” walk-a-thon is a great way to tell your friends and family about the RLS Foundation’s work to increase awareness about RLS and ultimately find a cure—and to ask for their support! When: RLS Awareness Week is September 23-29, 2007. Select the day of your choice that week or anytime during the month of September. Join hundreds of people across the country as they walk to support RLS with an evening walk to help symbolize the struggles so many face each night with RLS. Where: Anywhere! Decide on a date, gather pledges, and then walk with your local support group, family, friends or colleagues for a distance of your choice. How: Begin by asking friends, family, or co-workers to sponsor you during your walk. A pledge sheet is provided on the back of this page so you can begin to collect pledges. More information and pledge sheets can be found on the RLS Foundation’s website: www.rls.org. __________________________________________________________________________________ Special Incentives! All walkers will receive RLSF wristbands for themselves and for the people who have pledged to support their walk. Collect and send in your pledges before September 30th and you’ll also get some great RLS Foundation gear! • Send in $250 in contributions and receive an RLSF Coffee Mug • Send in $500 in contributions and receive an RLSF T-Shirt • The Top 5 Fundraisers will receive a limited-edition RLSF Fleece Jacket

www.rls.org

Summer 2007 7

First Annual Moonlight Walk for RLS Pledge Sheet RLS Awareness Week is September 23-29, 2007 Name_______________________________________________________________________________ Street_________________________________City___________________State________Zip_________ Phone_______________________________________Email___________________________________ I am walking in honor/memory of (optional): _______________________________________________ I am a Support Group Leader Sponsor Name

Mailing Address

Phone

Email

Pledge

1. _______________________________________________________________________________________________ 2. _______________________________________________________________________________________________ 3. _______________________________________________________________________________________________ 4. _______________________________________________________________________________________________ 5. _______________________________________________________________________________________________ 6. _______________________________________________________________________________________________ 7. _______________________________________________________________________________________________ 8. _______________________________________________________________________________________________ 9. _______________________________________________________________________________________________ 10. ______________________________________________________________________________________________ 11. ______________________________________________________________________________________________ Instructions: • Make all checks payable to “Restless Legs Syndrome Foundation.” • Please convert cash donations to a personal check. • Visit www.rls.org for more information and pledge sheets. • All donations are fully tax-deductible. • Please mail pledge sheet(s) and donations to RLSF by Sept 30 if possible. • Questions? Call 507-287-6465 or email [email protected]. Mail your pledge sheet and donations to: RLS Foundation • 1610 14th Street NW Suite 300 • Rochester, MN 55901 I acknowledge that I am participating in this event at my own risk. I agree not to make any claim against RLSF arising out of my participation in this event for any claims for injury or damage and release RLSF from any such claims.

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www.rls.org

Moving Forward

Honor Roll

T

he year 2007 marks the 15th anniversary celebration of the RLS Foundation, and we could not have done it without our loyal members. Your continuing support over the past 15 years has enabled the RLS Foundation to grow and serve our friends and family members living with RLS. We extend our heartfelt thanks and gratitude to every member of the RLS Foundation for renewing your commitment to the Foundation’s mission of increasing awareness, improving treatments, Karla Dzienkowski and finding a cure for RLS.

Development Committee Chair

Over the past 15 years, a small group of people has grown into an entire community of members with one common goal—finding a cure for RLS. Each of us has chosen to join for our own individual reasons, but collectively, we represent a community affected by a chronic condition. Communities present a united RLS voice and emphasize the need for further research to find a cure. RLS Foundation membership gives us strength in numbers, and in return, a powerful tool to drive research. This research ultimately leads to a better understanding of the condition and advanced pharmaceutical treatments. It also brings us closer each day to finding a cure. Our group of members gives us clout as a legitimate organization with a unified voice representing the millions of individuals living with RLS.

The RLS Foundation is sincerely grateful for the donations we have received in memory and in honor of the following individuals*: Memorials

Ila Durr Virginia Davidson Dorothea Cooney Frederic Paulsen Pauline F. Flynn Salvatore Sardo Mrs. Jessie Floyd Betty Dean Cinda Mair James Roberts Stanley and Karlyn Robinson Sidney Shear

Our community of members also plays an integral role in providing information and emotional support to others. Your gift of membership allows us to give hope to the numerous individuals who call the Foundation office seeking information, educational materials, a local support group, a healthcare provider familiar with RLS, or someone on the other end of the phone to listen and offer help. The RLS Foundation welcomes and cherishes every new member that comes into our community. However, our success depends upon our existing members who choose to renew their membership year after year. It is these individuals who form the stable and loyal base upon which we build our strength. We thank each of you who are committed to the cause and continue to remain loyal over the years. During the last year, our membership has faced a slight decline. If you are a member who has not renewed, please consider joining the Foundation again. Membership is the life blood of our organization. From our humble beginnings as a grassroots organization, the RLS Foundation has grown into an international organization because of your commitment. Please continue with that commitment. We each have our own reasons for supporting the RLS Foundation. Whether you, a friend, or a family member has the condition, please know that we appreciate your loyalty and thank you for coming back each year to renew your membership. Your dedication and support has allowed us to serve you and others who live with RLS. We would not be celebrating our 15th anniversary if it wasn’t for you. I cannot thank you enough for your support as we move together towards a cure. Sincerely,

Karla M. Dzienkowski Development Committee Chaired www.rls.org www.rls.org

* Begining May 22, 2007 and ending July 10, 2007

Giving Levels We value all of our supporters at every level. Each of you makes an important impact on the programs that help so many living with RLS. Please consider increasing your gift this year to support your favorite program. Leaders Benefactors Sponsors Sustainers Supporters Friends Contributors

$10,000 and above $5,000 to $9,999 $1,000 to $4,999 $250 to $999 $100 to $249 $75 to $99 $1 to $74 Summer 2007 9

RLS Foundation News

Moving Towards a Cure A Year-Long Campaign to Celebrate the Restless Legs Syndrome Foundation’s 15th Anniversary Fifteen years ago, President Bill Clinton was elected to office and Jay Leno replaced Johnny Carson on The Tonight Show. The year was 1992 and while only a few people had even heard of restless legs syndrome, millions were struggling with this confusing and often debilitating condition. Today, with the help of the Restless Legs Syndrome Foundation, we now have new treatment options and a greater understanding of RLS— there has even been progress towards identifying an RLS gene. We are hopeful that we are moving steadily towards the day when we will have a cure for RLS. Throughout this year, we will be celebrating the 15th anniversary of the Restless Legs Syndrome Foundation. The theme for our 15th anniversary year is “Moving Towards a Cure.” This theme symbolizes the journey of the countless individuals who face RLS every day. Our theme also describes our goals to increase awareness, improve treatments, and find a cure. This is the message we will share in this year’s RLS Awareness Week, September 23-29, 2007. In her column “Moving Forward,” RLS Foundation Board member Karla Dzienkowski reminds us of the importance of being a member in the RLS Foundation. We want to thank you, our members and supporters. You have helped us become who we are today. We hope you will continue to support us on our journey as we “move towards a cure.” Please continue to visit our website, www.rls.org, to learn more about the latest developments and to find out how you can help support our work.

RLS Clinical Trials For more information including travel or participation requirements, please visit our website at www.rls.org and select “NightWalkers Links” on our homepage. You may also email us at [email protected] or call us at 507-287-6465. • RLS clinical research study to evaluate the effects of an investigational medication on driving performance • Clinical research study of an investigational medication for RLS at the Albany Medical Center, New York • Research study for those who have RLS, are not taking medication, and are 18 years of age or older • Iron Treatment Study at Johns Hopkins • “Rise and Shine” Clinical Study of a New Investigational Treatment for Restless Legs Syndrome. (Subjects must be 18 years old and experience symptoms three or more times per week. Call toll free 1-866-390-5510.) • Investigational Use of a Marketed Drug for RLS (subjects must be children ages 12-17) • Dopamine and Iron in Restless Legs Syndrome (Study #104) • Effects of Sleeping Aids Commonly Used in RLS and Study of Brain Chemicals

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www.rls.org

Ask the Doctor

Q: I am 53 and I have had RLS for 14 years. I was debating whether to change to a new health insurance program which would lower my monthly premium and deductible significantly. The problem is the company would like to put a rider on the RLS. Since I pay out-of-pocket for my meds anyway, what is the worst scenario I can expect from going this route? In other words, other than taking meds for an aggravating health condition, are there any more complex problems that could occur which I should be aware of? A: Most of the consequences of RLS (e.g. psychiatric, medical, etc.) probably would fly as separable problems. I guess you might have to pay if you went to see an RLS specialist for a consult or if a medical visit was listed as due to RLS. You might be refused a sleep study if it were related to RLS and be given grief about it even if it were stated to be for another sleep problem. It would probably be best to ask specifically what would not be covered. Wayne A. Hening, MD, PhD A: It is hard to predict the worst-case scenario because there is a lot we don’t know about RLS. That said, it is conceivable (but much less likely) that insurance companies may refuse to cover depression, anxiety, insomnia, etc. that may be related or caused by RLS. It is always tricky to change insurance and have a rider like that in place. Mark J. Buchfuhrer, MD, NightWalkers Medical Editor A: Further complications, other than possible worsening symptoms requiring more medication, are unlikely. I would suggest shopping around for another insurance that doesn’t have a rider. Robert Werra, MD Q: Since pergolide is being removed from the market, I am switching to another drug, ropinirole (Requip). My doctor also prescribed an opioid (Vicodin) to use as needed for breakthrough symptoms. Has anyone with severe RLS already changed from pergolide to ropinirole? If so, how slowly did they titrate pergolide down and ropinirole up? What kinds of side effects occurred during this process? A: This is a very idiosyncratic process which largely depends on the current therapy and the individual’s response to change. I have not had many patients on pergolide since the introduction of ropinirole and pramipexole, but occasionally I have patients switching between dopamine agonists (ropinirole and pramipexole) or between a dopamine agonist and another agent, such as gabapentin. www.rls.org

Some of my patients have no major problem with decreasing one agent to the starting dose while at the same time adding the new agent and titrating up to effect. After they get to the starting dose of the old medication, they discontinue it all together and may or may not increase the new agent further. Any program of medication change depends on how many times during the day you use the medication and when you notice the symptoms. I have had some patients who altogether discontinued one medication and just started the other at an equivalent dose without much problem, while others required “bridging agents” like opioids or benzodiazepines. Given this case, there may be a place for addition of the ropinirole as the pergolide dose diminishes and reserve the use of the opioid for breakthrough symptoms during the switch. Side effects of withdrawal from pergolide are basically increased RLS symptoms—which is what you want to avoid in the switch to ropinirole (use of bridging agent or addition of ropinirole). Jeffrey S. Durmer, MD, PhD A: There are no guidelines for changing from pergolide to ropinirole. Part of the problem is that we do not really know the relative strengths of each medicine for treating RLS and these may vary considerably in each person. However, it is certainly reasonable to slowly decrease the pergolide while increasing the ropinirole, but there are no rules for accomplishing that task (and very likely, each person might be quite different). While increasing the ropinirole, it may be helpful to supplement further with Vicodin (or other opioid or tramadol) for the short-term. This may help relieve the increased symptoms that are occurring with this change in medication. Mark J. Buchfuhrer, MD, NightWalkers Medical Editor Q: On May 9, the US FDA approved the rotigotine patch (Neupro) for Parkinson’s disease. Could you please comment on how or if doctors might use this patch “off-label” for RLS patients? A: This patch will be useful for those RLS patients who have daytime symptoms of RLS and currently need 3 doses of their current dopamine agonist. It may also be useful for those who did not tolerate oral dopamine agonists and have RLS symptoms throughout the day. continued on next page

Summer 2007 11

Bedtime Stories Bedtime Stories are the opinions of the authors only and not of the RLS Foundation, its employees, or its Board of Directors. Publication in NightWalkers does not imply endorsement by the RLS Foundation. Therapies and results described in Bedtime Stories reflect the experiences of individuals and cannot be generalized to everyone with RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacy, and cost before making any changes to your treatment regimen. Stories may be altered for length or clarity.

M

y definition of restless legs syndrome:

The night-time twisting, jerking, aching, pulling, agony soyou-can’t-rest syndrome! Catherine Limón, Longmont, CO

M

y daughter finds the video game Dance Dance Revolution (DDR) a great help for her RLS. She does DDR in the evenings or when her RLS is problematic. When her friends are at the house they often have a “dance off.”

Karla Dzienkowski, Austin, TX

I

am a member and always look to the newsletter to see what folks suggest as treatments. I have never seen anyone mention the drug my doctor has given me: nortryptyline. Apparently he has prescribed it to folks with HIV who have neuropathy. It has made a huge difference in my life. I would say that my symptoms have been reduced by at least 80%. Please pass this suggestion along.

Bill Hirsh, San Francisco, CA Medical Editor’s note: Nortriptyline is classified as an antidepressant medication. Antidepressants have the potential to exacerbate RLS symptoms for some people.

I

have had RLS/PLMD for over 20 years. Over the course of this time, my symptoms have worsened and I have used every strategy imaginable to deal with them. I have used baths, teas, iron/mineral therapy, stretching, inflatable leg massagers and more. Recently, I dusted off an old aerobics video and purchased a Pilates workout CD to get back in shape. The Pilates promised to shape up my torso, particularly the abdomen, and I found that there were a lot of back stretching and massaging exercises. The aerobics was a much more intense routine for the whole body, using weights. I noticed that when I worked out, I went to bed with no RLS/PLMD symptoms, or at least any that were keeping me awake. I was actually closing my eyes and not opening them until daybreak! At first, I didn’t believe the exercises were the reason. My RLS had been a bear for so long it couldn’t have been that easy to fix. So, I 12 NightWalkers

tested the theory that these exercises were helping me sleep and am astonished that whenever I do them, I sleep normally. Although I was sleeping with the exercises, I wasn’t losing any weight, so I decided it was time to start running again. At bedtime after my first four mile run, my RLS symptoms were back with a vengeance. I couldn’t do anything to quell the tweaky feeling in my lower back and subsequent jolt down my legs. Even baths, my best weapon, weren’t working. It seems obvious now, but it took me awhile to conclude that the running was actually exacerbating the RLS. I love running, but I consistently have bad nights when I run and will have to give it up. However, I am grateful to have found an exercise program that consistently helps me sleep. Laurie Gessner, Cincinnati, OH Medical Editor’s note: Low to moderate exercise generally helps RLS, but vigorous exercise tends to worsen symptoms. A 2006 study on exercise and RLS showed that moderate exercise helped to improve RLS. ________________________________________________________ Ask the Doctor continued from page 11

The patch is applied once daily and should relieve RLS symptoms for 24 hours. Studies are currently in progress examining the use of Neupro for RLS. Mark J. Buchfuhrer, MD, NightWalkers Editor A: It is too early to tell who is best to receive the patch. I would suggest the patch for patients who have daytime and evening symptoms as many patients do not require the around-the-clock coverage that the patch provides. It is not clear if this product will increase the risk or decrease the risk of augmentation. The more constant plasma concentrations may decrease the risk of augmentation. On the other hand if the person is exposed to higher concentrations of dopamine than they would be from an oral formulation, they may be at greater risk of augmentation. Mary L. Wagner, PharmD

www.rls.org

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go to MIRAPEX.com or call 1-877-MIRAPEX.

When your legs feel better, you feel better. If you can’t afford your MIRAPEX, our patient assistance program may beyour ableMIRAPEX, to help. Call If you can’t afford our1-800-556-8317 patient assistance Copyright @ 2007, Boehringer Ingelheim Pharmaceuticals, Reserved. in U.S.A (05/07) program may Inc. be All ableRights to help. CallPrinted 1-800-556-8317. Copyright © 2007, Boehringer Ingelheim Pharmaceuticals, Inc. All Rights Reserved. (06/07)

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Summer 2007 13

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14 NightWalkers

www.rls.org

Fibromyalgia and RLS

Living with Fibromyalgia: First Drug Approved On June 21, 2007, Lyrica (pregabalin) became the first FDA-approved drug for specifically treating fibromyalgia. Marketed by Pfizer Inc., Lyrica reduces pain and improves function in patients with fibromyalgia. While patients with fibromyalgia have been shown to experience pain differently from other people, the mechanism by which Lyrica improves fibromyalgia symptoms is unknown. The drug was already approved to treat seizures, as well as pain from nerves damaged by diabetes or shingles. “People who take Lyrica should be aware of important side effects, including sleepiness and dizziness,” Jeffrey Siegel, MD, says. Dr. Siegel is the clinical team leader in the FDA’s Division of Anesthesia, Analgesia and Rheumatology Products. Other side effects seen in patients taking Lyrica include swelling of the hands and feet and allergic reactions. “Studies showed that a substantial number of patients with fibromyalgia received good pain relief with Lyrica, but there are other patients who didn’t benefit,” Siegel says. “This new approval marks an important advance, and we think it is reason for optimism. But we still have much more progress to make.” What Causes Fibromyalgia? Scientists speculate that the condition may be due to injury, emotional distress, or viruses that change the way the brain perceives pain, but the exact cause is unclear. People with rheumatoid arthritis, lupus, and spinal arthritis may be more likely to have the illness. According to ACR, people with fibromyalgia can have abnormal levels of Substance P in their spinal fluid. This chemical helps transmit and amplify pain signals to and from the brain. Researchers are looking at the role of Substance P and other neurotransmitters, and studying why people with fibromyalgia have increased sensitivity to pain and whether there is a gene or genes that make a person more likely to have it. Getting a Diagnosis Lynne Matallana says she felt her suffering was being dismissed as she went from doctor to doctor looking for answers. “Many doctors suggested that it was just stress,” she says. “Some of them even made references that it was all in my head. I was eventually misdiagnosed as having Lupus.” When Matallana was 39, a rheumatologist who was just starting his practice finally diagnosed her with fibromyalgia. “With my doctor’s help, I started to feel better,” she says. “It made all the difference that I had a healthcare provider who could give me insights as to what fibromyalgia research was showing, and that there were other people feeling what I was feeling.” www.rls.org

Family physicians, general internists, and rheumatologists are the doctors who typically treat fibromyalgia. There is no diagnostic test for it. Doctors make a diagnosis by conducting physical examinations, evaluating symptoms, and ruling out other conditions. For example, fibromyalgia can often be distinguished from arthritis because arthritis causes inflammation of joints that can be detected on x-rays and fibromyalgia does not. However, mild cases of arthritis that do not show up on x-rays may be easily confused with fibromyalgia unless other criteria are used to differentiate the two conditions. Another condition with similar symptoms, hypothyroidism, can be confirmed with a blood test that shows low thyroid levels. Diagnostic criteria set forth by ACR include a history of widespread pain for at least three months and pain in at least 11 of 18 tender point sites. More than Medicine People with fibromyalgia may find relief of symptoms with pain relievers, sleep medications, antidepressants, muscle relaxants, and anti-seizure drugs. But medications are just one part of the treatment approach. What helped Matallana was a combination of medicines for pain and sleep, treatment for some of the overlapping conditions like migraines and irritable bowel syndrome, and a combination of water therapy, massage and yoga. Walking, jogging, biking, gently stretching muscles, and other exercises also can be helpful. Emotional support is also essential, Matallana says. “My husband always believed me, and when you have that kind of support it makes a difference. It’s really about facing chronic pain for the rest of your life. So dealing with the emotional impact and not just the physical side is very important.” Source: U.S. Food and Drug Administration http://www.fda.gov/consumer/updates/fibromyalgia062107.html For More Information National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm American College of Rheumatology http://www.rheumatology.org public/factsheets/fibromya_new.asp National Fibromyalgia Association www.fmaware.org National Fibromyalgia Partnership, Inc. www.fmpartnership.org Fibromyalgia Network www.fmnetnews.com

Summer 2007 15

RLS Support Group Network United States

San Marcos Area Randi Scheeren 760-598-7331 [email protected]

Miami/Dade County Sarajane Cazares 305-935-6934 [email protected]

ARIZONA NW Valley Marilyn Butterfield 623-566-2635 [email protected]

Shasta County Charlotte Denney 530-336-5486

North Florida/South Georgia Ed Murfin 904-573-8686 [email protected]

ALABAMA Shoals Area Coretha Downs 256-247-3171

Lake Havasu Charlene Travelstead 928-453-9019 [email protected] Payson Beverly Davis 928-468-6626 [email protected] Tucson Area Jane Anderson 520-760-5039 [email protected]

Southern California Janis Lopes 714-633-0123 [email protected] South Sacramento Amy Jaynes 916-682-5209 [email protected] Ventura Area Dave Hennerman 805-766-2035 [email protected] COLORADO Denver Marge Fuhr 303-494-4913 [email protected]

ARKANSAS Hot Springs Village Kay Hall Enid Scripture 303-741-6190 501-922-0049 [email protected] [email protected] Arkansas John Graves 501-565-0341 [email protected]

CALIFORNIA Coachella Valley Charmaigne Menn 760-285-2231 [email protected] Gold Country Dale Kehoe 530-885-7037 [email protected] Marin County Nann Brown 415-456-0257 Monterey Bay William Schramm 831-484-9058 [email protected] Oakland Ron Bishop 510-652-4667 [email protected] Santa Rosa Russell Powell 707-324-3122 [email protected]

16 NightWalkers

Palm Coast Tricia Culligan 386-586-7123 [email protected] Judie Zamba 386-447-1204 [email protected] Gulf Coast Louis Siegel, MD 941-536-0475 [email protected] South Florida Ira & Lillian Kaufman 561-883-5956 [email protected] Spring Hill Bill & Betty Kinahan 352-200-5440 [email protected]

Southwest Colorado Joan Marett 970-882-3888 [email protected]

Tampa Bay Dr. Ivan Ackerman 813-655-9000 [email protected]

Northwest Colorado Vikki Franz 970-879-0284 [email protected]

Treasure Coast Mary Lou Mennona 772-546-0750

HAWAII Western Colorado Honolulu Barbara Evans Terry White 970-858-3520 808-293-2955 [email protected] [email protected] CYBERSPACE Stephen Wake [email protected] DELAWARE Greater New Castle / Kent Betsy Lacinski 302-292-2687 [email protected] FLORIDA Central Florida George Hess June Wharton 352-259-0889

Circadian Amblers Charles Herrera 954-720-8036 [email protected]

ILLINOIS Central Illinois Vernon Copeland 217-793-1703 [email protected] Champaign-Urbana Liz Jones 217-586-3851 [email protected] Greater Chicago Thomas Mahan 630-913-1627 [email protected]

INDIANA Southern Indiana Edith Hackman 812-522-2766 [email protected]

MARYLAND Baltimore Area Kim Walton 410-284-3643 [email protected]

Elaine Tucker 515-388-4736 [email protected]

MICHIGAN Western Michigan Neva Warsen 616-532-1698 [email protected]

IOWA Central Iowa Delila Roberts 515-597-2782

Eastern Iowa Diane Dodd Peterson 319-378-0186 [email protected] TriState/Dubuque Marty Wepking 563-582-7101 [email protected]

KANSAS Kansas City Nora Walter 913-268-8879 [email protected] South Central Kansas John LaFever 316-773-5195 [email protected] KENTUCKY Louisville Jim Kushman 502-425-0129 [email protected]

Restless in Southern Kentucky Ken McKenney 877-700-4070 [email protected]

LOUISIANA Capitol Area Bonnie Hymel 504-469-4938 [email protected] New Orleans Bonnie Hymel 504-469-4938 [email protected] MAINE Maine Sally Breen 207-892-8391 [email protected]

Southern Illinois Seacoast/Southern Maine Gail Byassee Régis Langelier, PhD 618-942-7143 [email protected] 207-351-5352 [email protected]

MASSACHUSETTS South Shore / Cape Cod and Islands Sheila Connolly 508-790-7640 [email protected]

MINNESOTA Northern Minnesota Aimee Martin 218-328-5987 [email protected] Twin Cities Cynthia Holton 651-431-0349 [email protected]

MISSISSIPPI Central Mississippi Stan Phillips 601-267-0156 [email protected]

MISSOURI Central Missouri Kathy Page 660-368-2382 [email protected] Mid-Missouri Kay Wright 573-897-4950 [email protected] NEBRASKA Greater Omaha Linda Sieh 402-832-5177 [email protected]

Joan Sulentic [email protected] Southeast Nebraska Ellen McMillan 402-489-8075 [email protected] Donna Pozehl 402-435-0172 [email protected] NEVADA Las Vegas NEW! Annie Flader 702-396-2812 [email protected]

www.rls.org

NEW HAMPSHIRE Granite State Fay Crowley 603-859-5020 [email protected]

OHIO Central Ohio Eloise Pratt 614-268-4188 [email protected]

SOUTH CAROLINA Greater Charleston Jack Kingston 843-388-8006 [email protected]

Upper Valley Night Walkers Gail Richens 603-643-2624 [email protected]

Maumee Valley Patricia Phelps 419-877-5012 [email protected] Rebecca Willi 419-704-8847 Northeast Ohio Lorraine Fossaceca 440-350-4567 [email protected] Southwestern Ohio Jan Schneider 937-429-0620 [email protected] OKLAHOMA Central Oklahoma Billye Nipper 405-326-6897 [email protected] OREGON Portland Delores Butterworth 360-892-5907 [email protected] Southern Oregon RG VanHorne, MD 541-955-2978 [email protected] PENNSYLVANIA Bucks County M. David Wilker 215-504-0458 [email protected] Pittsburgh North Alice Maxin 724-295-4117 [email protected] Moscow Hopefuls Ethel Rebar 570-842-3443 [email protected] RHODE ISLAND Southern Rhode Island Lisa Cugini 401-322-3017 [email protected]

Midlands June Metts 803-771-7809 [email protected]

Deborah Griffiths 603-448-3702 [email protected] Seacoast Roberta Kittredge 603-926-9328 [email protected]

NEW JERSEY Central New Jersey Elizabeth Visone 973-715-3868 [email protected]

NEW MEXICO Rio Ranchos NEW! Meg Lindsey 505-344-2420 [email protected] NEW YORK Long Island Carol & Bob Germann 631-225-0412 [email protected] Manhattan Charlotte Sherman 212-233-0810 [email protected] Western NY Lee Fischer 716-741-1560 [email protected]

NORTH CAROLINA Restless in Raleigh Amelia Lewellen 919-847-7506 [email protected] Restless in Metrolina Elizabeth Cooke 704-821-3832 [email protected]

Lynchburg Area Patty Arthur 434-384-9013 [email protected]

Northwest Wisconsin Jeanne Chamberlain 715-635-2896 [email protected]

Northern Virginia Terry Caruthers 540-822-4143 [email protected]

Sheboygan Robert Pamenter 920-892-7373 [email protected]

TENNESSEE State of Franklin Sherry Dagnall 423-639-9038 WASHINGTON [email protected] Lane County NEW! Emily Seymore East Tennessee 541-682-6394 Don Kleinfelter [email protected] 865-577-7215 [email protected] Seattle & Vicinity

West Bend Karen Borresen 262-306-7373 [email protected]

Southwest Virginia Annette Price 540-544-7454 [email protected]

Canada ALBERTA Calgary Karen Shillingford 403-532-2534 [email protected] BRITISH COLUMBIA Roger Winters TEXAS North Vancouver NEW! 206-755-2526 College Station Karen Norvell [email protected] Rachel Scholz 604-980-8727 979-693-6070 Skagit County [email protected] [email protected] Charlotte Spada Okanagan Valley 360-293-7328 Greater Dallas “Billie” Bartley [email protected] 250-549-2280 Lynne Kaiser 972-422-0816 [email protected] Tacoma Area [email protected] Al Ruff Vancouver Island 253-222-5232 Greater Houston Marilyn Flynn [email protected] Helen Simons 250-732-2777 713-468-4192 [email protected] Whidbey Island [email protected] ONTARIO Eva Fluesmeier Brantford 360-678-3693 Rio Grande Valley [email protected] Gwen Howlett Carol Mallard 519-753-1028 956-428-0601 WEST VIRGINIA [email protected] [email protected] Wetzel County Hamilton Janet Forni Greater San Antonio Wendy Lowden 304-455-2073 Barbara Acosta [email protected] 905-387-5392 210-659-7478 [email protected] [email protected] WISCONSIN London South Central Wisconsin VIRGINIA Annemarie DuToit Roger Backes Central Virginia 519-672-7619 608-276-4002 Pamela Hamilton-Stubbs, MD [email protected] [email protected] 804-273-9900 Ottawa [email protected] Greater Milwaukee Carol Connolly Tom Churchill 613-226-7126 Fauquier County 414-964-8185 [email protected] Dee Johnson [email protected] 540-937-3520 [email protected]

LOOKING FOR LEADERS | Whether you’ve recently discovered that you have RLS or have had RLS for years, you can be a support group leader. Many major cities, and even entire states, lack a support group to provide advocacy, education, and support to the millions of people who are living with RLS. The RLS Foundation provides assistance to you in starting and maintaining your group. If you are considering becoming a leader, please contact the RLS Foundation by phone at 507-287-6465, by email at [email protected], or at www.rls.org. www.rls.org

Summer 2007 17

International Restless Legs Groups

The following independent groups, located outside of the U.S., work in cooperation with the RLS Foundation. AUSTRALIA Warriewood - Sleep Disorders Australia Beverly Yakich 02-9415-6300 [email protected] AUSTRIA Austrian Support Group Waltraud Moldaschl 0664/2633100 [email protected]

Support Group Spotlight

Check Out Our New Groups! One of the most important parts of each issue of NightWalkers is an up-to-date list of the Foundation’s RLS Support Groups. This list includes groups in both the US and Canada. You may notice that the number of groups is growing! In fact, in our spring issue we added eight new groups in five states. In this issue, we are pleased to announce that four new groups have recently formed, including groups in two states that previously did not have a group: Nevada led by Annie Flader and New Mexico led by Meg Lindsey.

UNITED KINGDOM Thorpe Bay, Essex - Ekbom Support Group Eileen Gill 44 (0)1-702-582-002 [email protected] www.ekbom.org.uk FINLAND Helsinki - Levottomat jalat-RLSry Markku Partinen, MD, PhD [email protected] www.uniliitto.fi FRANCE AFSJR Guy Bourhis 02-38-34-32-80 [email protected] www.afsjr.fr

GERMANY Munich Deutsche Restless Legs Vereinigung Ilonka Eisensehr [email protected] www.restless-legs.org HOLLAND Zaanstad - Stichting Restless Legs c/o Ms. Joke Jaarsma 31-20-679-6234 [email protected] NEW ZEALAND Nelson - Convenor of Richmond RLS Support Group Tom Marston 0064-03-5486398 [email protected]

SPAIN Montserrat Roca [email protected] www.aespi.net 34-93-202-38-39 SWEDEN Stockholm Leif Gustafsson [email protected] +46 430 127 20

Olof Hansson [email protected] +46 875 219 05

SWITZERLAND Zurich, Wil, Aarau Support Group Switzerland Dr. J. Mathis [email protected] www.restless-legs.ch

Annie Flader

Annie Flader, Nevada It was only after an advertisement on television and subsequently, a consultation with her doctor, that Annie Flader discovered the cause of her sleepless nights was RLS. Living in California at the time, she quickly found support from a group in her area, however, when she relocated to Nevada, she was surprised to find out that there wasn’t a support group in the entire state. Not willing to sit idly by, Annie started a group herself. “I wanted to provide information and support to those suffering from RLS who reside in Nevada and surrounding areas.”

While her own diagnosis is relatively recent, Annie now recognizes that she has lived with RLS for more than two decades. “Back in the 80s, I was told that I kicked when I slept, but I couldn't understand it since I couldn't remember kicking. As years went by, I felt a stronger and stronger need to stretch my leg whenever I sat down.” Annie mentioned these issues to her physician, however, he didn’t recognize it to be RLS. He gave her a few things to try, but it was only when Annie learned about RLS herself that she and her doctor were able to come up with a successful treatment plan. Her years of experience in dealing with RLS will be one gift she can share as a group leader. “The best advice I can give for coping with RLS is to acknowledge that you have it, that you are not alone, and that you can continue a normal life. Ask yourself, ‘When is my RLS more active?’, and then analyze what you ate that day and what activities you participated in. Get to know your body; it will tell you what you need to know. It will tell you what you should and should not avoid in your daily life.” Although it has helped Annie to find that her condition has a name and that she’s not alone, she still feels that more needs to be done. “There needs to be more research and testing done for RLS. We need to increase awareness and we need to move forward: to find a cure, new medicines, exercises, physical therapy—things that might help us get more answers and help for a growing problem.” continued on next page

Anni Maurer 056-2825403 [email protected]

18 NightWalkers

www.rls.org

continued from previous page

Meg Lindsey, New Mexico For as long as she can remember, Meg Lindsey has had trouble sleeping, although at the time, she didn’t connect the pain she was having in her legs with her inability to sleep. In 2004, she finally discussed the problem with her physician. “I'd had little to no sleep for several days and was a mess,” Meg recalls. “After a few questions he decided I probably had RLS and was kind of excited because he'd never treated an RLS patient. So he and I began to learn together.” When she started asking her doctor where she could get support for this new condition, her doctor jokingly suggested looking online for a support group. But Meg took his suggestion to heart. “I found the RLS Foundation site and read everything that was there and decided to join.” Meg Lindsey

However, when she looked on www.rls.org for a support group in her area, she was disappointed to learn that there was not a single group in New Mexico. “I remembered how I felt all that time before learning about RLS, and it wasn't pleasant. I decided we really needed someone here that can help others find help and let them know they aren't alone.” Meg decided that she could be that someone. She decided to start an RLS Foundation support group in New Mexico. Meg is excited about being able to support people in her area. “I feel that more people have at least heard of RLS now but have no idea what it's really like. As with many other problems we humans face, the more you learn the better. Since RLS doesn't always present itself the same to all, continuing research is needed to expand the types of treatment.” She also wants to encourage others not to give up. “Not every doctor will recognize this or know what to do for you. Work on it until you find one that understands the syndrome and will work with you. Also know that what works for one person doesn't mean it will work for you. It's an ongoing, learning and changing problem. Never give up!”

Help Increase Awareness

Project Impact Giving (P.I.G.)

Wear RLS Foundation pins, caps, or clothing to help increase awareness of RLS! You can view our catalog online by visiting www.rls.org or request a print copy by calling 507-287-6465.

To our members participating in Project Impact Giving (P.I.G.), it is time to empty your RLS piggy bank savings for this year. Please send your contribution (which is fully tax-deductible) to the RLS Foundation by converting coins and cash into a personal check. Thank you for your continued support!

www.rls.org

Summer 2007 19

RLS Book Excerpt

T

he RLS Foundation wanted to take the opportunity to introduce you to three new books currently available on the topic of restless legs syndrome: Restless Legs Syndrome: Coping with Your Sleepless Nights by Drs. Buchfuhrer, Hening, and Kushida; Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic by Robert Yoakum; and Restless Legs Syndrome: The RLS Rebel’s Survival Guide by Jill Gunzel. The authors have generously agreed to share excerpts with our readers. Look for excerpts for the two latter books in the fall and winter issues of our newsletter. While the Foundation does not endorse any of these products, we do want to make it a point to share what is available to help our members with ideas, encouragement, and support. Restless Legs Syndrome: Coping with your Sleepless Nights Mark J. Buchfuhrer, MD; Wayne A. Hening, MD, PhD; Clete A. Kushida, MD, PhD Chapter 14: Restless Legs Syndrome and Relationships One of the most difficult aspects of living with RLS is its affect on relationships. The discomfort, fatigue, and restrictions caused by RLS can spill over into your relationships, making it impossible to maintain intimate or close associations. Do you stay home by yourself instead of going to the movies or a restaurant? Do you find yourself sleeping on the couch or in a separate bed some or all of the time? Have you turned down a dinner invitation, a party, or a date? Maybe you have stopped doing things you used to do with others. If so, you probably already know the affect of RLS on your relationships. People use many strategies to keep their relationships healthy when faced with a chronic disorder such as RLS. Educating yourself and the other people in your life are important. Managing RLS to ensure improved quality of life is also important. If you can lessen the time RLS symptoms plague you, there will be fewer disruptions in your relationships. Ann Battenfield, who has live with RLS for a long time and knows the toll RLS can take on a relationship, has written the rest of this chapter. “I feel trapped in my home and in my own body,” says one young woman with severe RLS. Having RLS often means being restricted in many areas of your life, including social life with family and friends, which can lead to stress or feelings of anger, frustration, or grief. People with RLS often avoid activities that require sitting, especially during the evening hours. Many shared activities involve sitting, such as watching a movie, car rides, plane 20 NightWalkers

trips, or going out to dinner. These restrictions create a difficult situation for both the person with RLS and for those close to them. Lee, a 45-year-old man with severe PLMD, echoes the sentiments of many when he says, “Your social life becomes optional when you are fatigued and can barely complete simple tasks, such as going to work or feeding the children.” If you have a long-standing card game with a group of friends every Friday evening, you might stop going. If this was the primary time you spent with these friends, your friendship will probably be affected. The restrictions of RLS can take a toll on your sex life, too. People have less desire to have sex when they are exhausted. The medication for RLS can affect desire, functioning, and mood. People with severe RLS often find themselves sleeping in different beds from their partners, which is where many couples initiate sex. These restrictions are often frustrating. When a loved one has a problem, the first efforts may be to find a solution, but RLS cannot be “solved,” and it may take time for the person with RLS to gain control of the disorder. Liz and Drew were taken by surprise when her RLS suddenly became much worse. The medications were not working, and Liz was sleeping less than 3 hours a night. Anxious, stressed, and feeling like she was never going to get better, she started crying one morning. Drew immediately became angry and walked into the next room saying, “I can’t take this.” After they had calmed down and were able to talk about it, Drew admitted that he was not angry with Liz, nor did her crying anger him. He was frustrated because there was nothing he could do. He felt impotent to help her. As one person with RLS pointed out, “There is no bandage for RLS, which gives our spouse or partner little opportunity to help.” It can be difficult to create and maintain relationships when faced with the restrictions of RLS. You might avoid starting a new relationship if you do not think someone will tolerate the restrictions you might need to place on it. Restrictions on sex and other activities can weaken a relationship, possibly resulting in a break-up or divorce. Other activities, such as taking a vacation, can be extremely difficult financially and physically when you cannot stay in a family member’s house or share a hotel room without disrupting those around you. Some people with RLS may consider not having children, even if they want them. Women have additional difficulties. During pregnancy they cannot take most of the RLS drugs, and RLS symptoms are often much worse during pregnancy. After braving one pregnancy, some women may decide they cannot go through another, no matter how many children continued on page 23

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Night after night, the urge to get up and move kept me from falling asleep.

Restless Legs Syndrome (RLS) is a recognized medical condition. One that’s shared by nearly 1 in 10 US adults. Most people experience its symptoms in the evening: • The compelling urge to move Requip helped me make • Disturbing sensations in the legs • Moving offers temporary relief peace with my legs. • Trouble resting or falling asleep People who suffer from RLS often describe their leg sensations as creepy, crawly, tingling, or tightening. Getting up and moving their legs offers some relief, but the symptoms always come back. Only a doctor can determine if you have Restless Legs Syndrome. Requip is the first FDA-approved treatment for RLS. Taken daily, non-habit-forming prescription Requip helps relieve the symptoms of moderate-to-severe primary Restless Legs Syndrome (15 or more episodes monthly). Ask your doctor if Requip is right for you. Important Safety Information: Prescription Requip is not for everyone. Requip Tablets may cause you to fall asleep or feel very sleepy during normal activities such as driving; or to faint or feel dizzy, nauseated, or sweaty when you stand up. Tell your doctor if you experience these problems or if you drink alcohol or are taking other medicines that make you drowsy. Also tell your doctor if you experience new or increased gambling, sexual, or other intense urges while taking Requip. Side effects may include nausea, drowsiness, vomiting, and dizziness. Most patients were not bothered enough to stop taking Requip. Requip should be taken once daily 1–3 hours before bedtime. See important patient information on the next page. visit www.requip.com or call 1-877-REQUIP4

For moderate-to-severe primary Restless Legs Syndrome

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Summer 2007 21

ADVERTISEMENT PATIENT INFORMATION REQUIP® (ropinirole hydrochloride) Tablets For Restless Legs Syndrome (RLS) Also Known as Ekbom Syndrome Read this information completely before you start taking REQUIP. Read the information each time you get more medicine. There may be new information. This leaflet provides a summary about REQUIP. It does not include everything there is to know about your medicine.This information should not take the place of discussions with your doctor about your medical condition or REQUIP. What is REQUIP? REQUIP is a prescription medicine to treat moderate-to-severe primary Restless Legs Syndrome. It is sometimes used to treat Parkinson’s disease. Having one of these conditions does not mean you have or will develop the other. What is the most important information I should know about REQUIP? • Patients with RLS should take REQUIP differently than patients with Parkinson’s disease (see How should I take REQUIP for RLS? for the recommended dosing for RLS). A lower dose of REQUIP is generally needed for patients with RLS, and is taken once daily before bedtime. • There are known side effects of REQUIP. If you fall asleep or feel very sleepy while doing normal activities such as driving, faint, feel dizzy, nauseated, or sweaty when you stand up from sitting or lying down, you should talk with your doctor (see What are the possible side effects of REQUIP?). • Before starting REQUIP, be sure to tell your doctor if you are taking any medicines that make you drowsy. Who should not take REQUIP? You should not take REQUIP if you are allergic to the active ingredient ropinirole or to any of the inactive ingredients.Your doctor and pharmacist have a list of the inactive ingredients. What should I tell my doctor? Be sure to tell your doctor if: • you are pregnant or plan to become pregnant. • you are breast-feeding. • you have daytime sleepiness from a sleep disorder other than RLS or have unexpected sleepiness or periods of sleep while taking REQUIP. • you are taking any other prescription or over-the-counter medicines. Some of these medicines may increase your chances of getting side effects while taking REQUIP. • you start or stop taking other medicines while you are taking REQUIP. This may increase your chances of getting side effects. • you start or stop smoking while you are taking REQUIP. Smoking may decrease the treatment effect of REQUIP. • you feel dizzy, nauseated, sweaty, or faint when you stand up from sitting or lying down. • you drink alcoholic beverages.This may increase your chances of becoming drowsy or sleepy while taking REQUIP. How should I take REQUIP for RLS? • Be sure to take REQUIP exactly as directed by your doctor or healthcare provider. • The usual way to take REQUIP is once in the evening, 1 to 3 hours before bedtime. • Your doctor will start you on a low dose of REQUIP. Your doctor may change the dose until you are taking the amount of medicine that is right for you to control your symptoms. • You may receive a starting kit with doses marked by day. The pills in this kit slowly increase your daily dose over time so that you and your doctor may determine what the best dose is for you. Different people respond differently to this medicine.You may not need the highest dose pill in this kit or you may need an even higher dose to relieve your symptoms. You should carefully follow your doctor’s advice on the use of this kit. • If you miss your dose, do not double your next dose. Take only your usual dose 1 to 3 hours before your next bedtime.

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• Contact your doctor, if you stop taking REQUIP for any reason. Do not restart without consulting your doctor. • You can take REQUIP with or without food. Taking REQUIP with food may decrease the chances of feeling nauseated. What are the possible side effects of REQUIP? • Most people who take REQUIP tolerate it well. The most commonly reported side effects in people taking REQUIP for RLS are nausea, vomiting, dizziness, and drowsiness or sleepiness. You should be careful until you know if REQUIP affects your ability to remain alert while doing normal daily activities, and you should watch for the development of significant daytime sleepiness or episodes of falling asleep. It is possible that you could fall asleep while doing normal activities such as driving a car, doing physical tasks, or using hazardous machinery while taking REQUIP. Your chances of falling asleep while doing normal activities while taking REQUIP are greater if you are taking other medicines that cause drowsiness. • When you start taking REQUIP or when you increase your dose, you may feel dizzy, nauseated, sweaty or faint, when first standing up from sitting or lying down. Therefore, do not stand up quickly after sitting or lying down, particularly if you have been sitting or lying down for a long period of time. Take a minute sitting on the edge of the bed or chair before you get up. • Some patients taking ropinirole have shown urges to behave in a way unusual for them. Examples of this are an unusual urge to gamble or increased sexual urges and/or behaviors. If you or your family notices that you are developing any unusual behaviors, talk to your doctor. • Hallucinations (unreal sounds, visions, or sensations) have been reported in patients taking REQUIP. These were uncommon in patients taking REQUIP for RLS.The risk is greater in patients with Parkinson’s disease who are elderly, taking REQUIP with L-dopa, or taking higher doses of REQUIP than recommended for RLS. This is not a complete list of side effects and should not take the place of discussions with your healthcare providers.Your doctor or pharmacist can give you a more complete list of possible side effects. Talk to your doctor about any side effects or problems you may have. Other Information about REQUIP • Studies of people with Parkinson’s disease show that they may be at an increased risk of developing melanoma, a form of skin cancer, when compared to people without Parkinson’s disease. It is not known if this problem is associated with Parkinson’s disease or the medicines used to treat Parkinson’s disease. REQUIP is one of the medicines used to treat Parkinson’s disease, therefore, patients being treated with REQUIP should have periodic skin examinations. • Take REQUIP exactly as your doctor prescribes it. • Do not share REQUIP with other people, even if they have the same symptoms you have. • Keep REQUIP out of the reach of children. • Store REQUIP at room temperature out of direct sunlight. • Keep REQUIP in a tightly closed container. This leaflet summarizes important information about REQUIP. Medicines are sometimes prescribed for purposes other than those listed in this leaflet. Do not take REQUIP for a condition for which it was not prescribed. For more information, talk with your doctor or pharmacist. They can give you information about REQUIP that is written for healthcare professionals.

GlaxoSmithKline Research Triangle Park, NC 27709 ©2006, GlaxoSmithKline. All rights reserved. October 2006

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RLS Book Excerpt Book Excerpt continued from page 20

they would like to have. For men or women who are managing severe RLS, the thought of taking care of young children may seem too difficult when coupled with RLS symptoms. For people with a family history of RLS, there may be concerns of passing RLS on to their children. Loss Anger, resentment, misunderstanding, and guilt often accompany the experience of loss. Ilene found out about this when, in her 50s, she began dating a man who cooked romantic dinners, seemed to adore being with her, and pampered her in many ways. She felt deeply loved and cared for when they were together. After a few months, they decided to share an apartment. On nights when her RLS was active, she would sleep on the couch. The next morning her boyfriend would accuse her of not wanting to be with him and not loving him. Loss of sleep is extremely common in RLS. Any household member can lose sleep because of the constant awakenings, movement, and nocturnal wandering of the person with RLS. The bed partner may lose sleep and may choose to sleep in another bed. This may resolve some of the problems, but it also removes a primary source of physical contact and intimacy. Loss of intimacy in close relationship between couples, family, or close friends is devastating to everyone involved. Intimacy, as talked about here in relation to RLS, includes both physical and emotional closeness. For example, you may lose physical closeness, such as snuggling or sitting together on the couch while watching TV, because it could trigger an RLS attack. Emotional closeness can suffer if you do not talk about your RLS experience. Relationships also suffer if you talk about your experience and do not feel that the other person believes or understands you. It is common to feel that no one understands your problems. There is no shared language to explain RLS, and a feeling of deep and persistent loneliness can result. Misunderstandings, denial, and lack of open communication erode intimacy. They can also build mistrust, anger, and frustration. The changes caused by a chronic disorder such as RLS can be particularly stressful. Both parties may question how much they will lose, including their plans, dreams, and hopes. Sleep deprivation and medications sometimes have a dramatic effect on how people feel, therefore affecting how they act. If this happens, you may wonder what is wrong with you, and your partner may feel like the person he fell in love with has been lost.

RLS sometimes causes the loss of a partner’s understanding and compassion. They may become annoyed and lose patience with the foot-tapping, arm-waving, or other movements that are necessary to eliminate uncomfortable sensations. It is extremely difficult to explain how this disorder feels or why moving the affected body part is unavoidable. RLS has not received much attention, and few people know anything about it. It is similar to other “invisible” disorders. You may appear healthy to your friends, coworkers, and family because there are no physical signs to reveal how fatigued or ill you feel. There may also be financial considerations. People with severe RLS might have to change jobs, work less, or stop working completely. They may be unable to contribute financially, as they did in the past. The loss of income and inability to meet joint financial goals can cause additional strains. What can you do How can you take a vacation with your family? What can you do to prevent emotional disconnection from your partner or family? What should you say when someone asks you about RLS? How can you keep intimacy in your life and prevent your relationship from ending because of the disruptions caused by RLS? As discussed in Chapter 12, coping strategies can provide solutions, but ongoing disruptions from RLS can eventually cause problems in relationships. Good communication skills can prevent this from happening. Communication Basics Effective communication is essential for healthy relationships. The affects of RLS can hamper effective communication, even in the happiest and healthiest relationships. Direct, honest communication, done in a caring way, can help you maintain your relationships when your RLS is out of control and may help you form stronger relationships when your RLS is under control. There are many books on relationships and communication. Read these books, attend workshops, or see a professional counselor to help develop communication skills. Remember, both parties must be willing to participate for success in relationships. In his book Will Our Love Last?, Sam Hamburg explains that all successful relationships have an underlying element of respect. Understanding and compassion will continued on page 24

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RLS Book Excerpt

Book Excerpt continued from page 23

be lacking if there is no respect. This can create communication problems, especially in relationships that include a person who has a chronic condition such as RLS. Mutual respect is also the basis for friendships. If you find yourself saying or hearing, “Why did he do that? He knows how much RLS bothers me!” or, “I just don’t understand why she just can’t sit still,” you are having problems with respect. Respect occurs naturally when people share a common attitude regarding issues important to them. People with RLS usually provide immediate understanding and compassion to one another; however, what can you do when those around you do not have RLS? Identify a problem the other person has or something that creates difficulty for them. You might choose a medical problem. You can use this as an analogy to help them understand how your RLS affects you. For example, you can say something like “Do you remember when you told me how your life is affected when you have anxiety attacks? You can’t sleep, you’re tired, you feel like no one understands, and you think it will never feel better? RLS affects me the same way.” Offer unconditional respect, even if you do not understand what someone with RLS is going through. The fact that you care about this person is all you need to do this. When someone important to you says that their quality of life is

affected by RLS, do your best to believe it. It should make no difference whether or not you can understand what they are actually experiencing. The people in your life will not understand what you are experiencing unless you tell them. Sharing helps create intimacy. Lynne, who has had RLS for a long time, said, “I never realized how much of the RLS truth I hid from those who really care about me. Maybe knowing the facts gives people close to me the opportunity to make life easier.” Fear prevents us from sharing, including the fear that you have already burdened others enough. “I thought he knew what I meant when I said pain,” Lynne said sheepishly. “When I finally got brave enough to say, ‘I need to talk,” I was shocked at how little he knew about what I was going through. He did not know that I was afraid to drive because I was not alert enough, or that I didn’t watch TV with him because it was so uncomfortable. He deserved better from me. I think I am moving in the right direction now, ever so slowly, but moving forward.” Restless Legs Syndrome: Coping with Your Sleepless Nights by Mark J. Buchfuhrer, MD, Wayne Hening, MD, PhD, and Clete Kushida, MD is available from Demos Medical Publishing at 1-800-532-8663 or on the web at www.demosmedpub.com.

New Textbook on RLS Restless Legs Syndrome: Diagnosis and Treatment William G. Ondo. Baylor College of Medicine, Houston, TX. Series: Neurolgoical Disease and Therapy. Volume: 86 ISBN: 9780849336140 Restless Legs Syndrome: Diagnosis and Treatment is a comprehensive 392-page book by William G. Ondo, MD designed to provide a complete overview of RLS with chapters ranging from basic science theory to practical management issues for the non-specialist. This new textbook for medical professionals: • Discusses sleep physiology and sleep disorders. • Provides details about the basic physiology that influences RLS, including iron regulation. • Reviews CNS physiology and the genetics of RLS. • Familiarizes physicians with diagnostic criteria and common features of RLS. • Considers the diagnosis of RLS in children. • Covers conditions associated with RLS, including uremia, iron deficiency, and pregnancy. • Describes current and future treatment options for RLS. Author William G. Ondo is currently an Assistant Professor at the Baylor College of Medicine. He is also an Associate in the Parkinson Disease Center and Movement Disorders Clinic in Houston, Texas. Please note that the RLS Foundation does not endorse or sponsor any products or services. 24 NightWalkers

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In the News The following reports have been summarized from articles published in medical journals. The results of any study, large or small, should not be generalized until they have been corroborated by other peer-reviewed articles.

RLS and Blood Pressure

Is RLS less prevalent among African Americans?

Nocturnal blood pressure changes in patients with restless legs syndrome. Pennestri MH, Montplaisir J, Colombo R, Lavigne G, Lanfranchi PA. Neurology. 2007;68:1213-8.

Race and restless legs syndrome symptoms in an adult community sample in east Baltimore. Lee HB, Hening WA, Allen RP, Earley CJ, Eaton WW, Lyketsos CG. Sleep Med. 2006;7:642-5.

Background: Prior research has shown that RLS has been associated with a higher risk for hypertension (high blood pressure) and coronary artery disease (clogging of the arteries that can lead to a heart attack), but why this occurs has not been discovered. Approximately 80% of patients with RLS have periodic leg movements (PLMS) while asleep, and about one-third of these PLMS cause a partial awakening called microarousals (MA). PLMS in many sleep disorders cause a change in heart rate, and PLMS with MA cause even greater changes in heart rate. Other research has shown that hypertension is linked to coronary artery disease, but it has also shown that frequent changes in blood pressure are also linked to coronary artery disease. Research: The researchers in this paper wanted to see what kind of blood pressure changes occurred in patients with RLS. They recruited ten patients with RLS and normal blood pressure and had them spend the night in a sleep laboratory. Blood pressure and brain wave activity (to catch MA) were recorded. The results of this study showed that heart rate and blood pressure changed significantly with PLMS in these patients with RLS. The changes were greater when the PLMS were associated with MA. The blood pressure changes were also worse in older patients and in those who have had RLS longer. The Bottom Line: Based on this study, patients with RLS have a higher frequency of fluctuations in their blood pressure. The older the patient is, and the longer they have had RLS, the larger the fluctuations. This research gives one possible explanation of why patients with RLS have a may have higher risk for strokes and coronary artery disease. New Questions: Only ten patients were studied in this research article. Would the results be the same with a larger study that included more people? Why do older patients and patients who have had RLS longer have more changes in their blood pressure with PLMS?

Background: It has been suggested that RLS primarily affects Caucasians. This may be due to the fact that there are few African Americans that seek treatment in specialty clinics for symptoms of RLS. The two possible explanations for this are that either there is a true difference in who RLS affects, or there are racial discrepancies in access or utilization of health care. Research: The researchers used an expanded version of a previously validated RLS screening questionnaire. They received 1028 responses from members of a bi-racial community in Baltimore. There were 633 Caucasians (61.8%), 358 African Americans (35.0%), and 33 people from other racial/ethnic groups (3.2%; 16 American–Indians, 7 Asians, 2 PacificIslanders, and 8 Hispanics). The results of this study showed that there was an overall prevalence of RLS of 4.1% in the community which is somewhat lower than the national estimates of 7-10%. This data was consistent with previous research in that more women were affected than men. However, the prevalence of RLS was not statistically significant between races. Researchers found that 4.7% of African Americans and 3.8% of Caucasians had RLS and that 9 African Americans and 9 Caucasians had symptoms that occurred two or more times a week. The Bottom Line: Based on this study, there is not a clinically significant difference in the prevalence of RLS between African Americans and Caucasians. New Questions: Why is there an under-detection of RLS in African Americans? Is it that RLS presents itself somewhat differently between races, is there a different attitude about the condition and/or treatment between the races, or is it simply an access/utilization of health care issue?

In the News continued on page 26

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In the News

In the News continued from page 25

RLS Twin Study Canadian Restless Legs Syndrome Twin Study. Xiong L, Jang K, Montplaisir J, Levchenko A, Thibodeau P, Gaspar C, Turecki G, Rouleau GA. Neurology. 2007;68:1631-3. Background: Due to the fact that RLS has shown such a strong family association, it has long been believed to have a strong genetic component. Unfortunately, except for a few families who have been studied intensely, little is known about the genetics of RLS, and only a few twin studies have been performed. The idea behind a twin study is that since identical twins have identical DNA, the differences between them should be due to environmental or other factors alone. If a researchers compares how different the twins are, especially with twins that are raised apart from each other, a study should be able to see the degree that a trait is genetic or environmental. Research: The researchers asked 272 sets of twins from across Canada that are in the University of British Columbia twin registry and 37 sets of twins from Quebec to answer a questionnaire. This was to determine if a person has definite RLS, probable RLS, or no RLS at all; it was also used to determine severity and familial history of RLS. The results of this study showed that there was a strong association between anemia, arthritis, and definite RLS. The average age-of-onset of symptoms for those with definite RLS was 30.7 years old. The average age-of-onset of symptoms for those with probable RLS was 25.9 years old. The results also showed that if one identical twin had definite RLS, there was a 53.7% chance that the other identical twin would have definite RLS. However, when looking at twins that were non-identical, or fraternal (which means they do not have the same DNA), if one twin had definite RLS, there was only a 15.4% chance the other non-identical twin would have definite RLS. The Bottom Line: Based on this study, there is a strong link between RLS and anemia and arthritis. There is also a strong genetic link with RLS, but since the presence of definite RLS was 53.7% in identical twins, and not 100%, there has to be environmental or other components to RLS as well. New Questions: Anemia is often associated with decreased iron which has been linked to RLS, but why is there a strong association with arthritis? What are the environmental or other components that contribute to RLS, and are they avoidable or reversible? 26 NightWalkers

Earley Named Chair of Medical Advisory Board The Restless Legs Syndrome Foundation is pleased to announce that Christopher J. Earley, MD, PhD has been appointed to the position of Chair of the Foundation’s Christopher J. Earley, MD, PhD Medical Advisory Board (MAB). This Board serves to support the work of the Restless Legs Syndrome Foundation by reviewing the educational material that the Foundation produces—the primary ingredient in ensuring that the Foundation continues to be the most trusted source for reliable, research-based information on restless legs syndrome (RLS). Dr. Christopher Earley is an Associate Professor of Neurology at Johns Hopkins and has been a faculty member there since 1991. His research and clinical interests are devoted to sleep medicine, and he has a special interest in RLS. His current research is focused on understanding the pathophysiology of RLS and clarifying the value of various treatments associated with this common disorder. Dr. Earley is a co-founder of the Johns Hopkins Center for Restless Legs Syndrome at the Johns Hopkins Bayview Medical Center which is devoted to both the clinical and research sides of RLS. Both of these areas are fostered by educating, managing, and treating RLS. This includes a weekly clinic designed to reach people affected by RLS. Dr. Earley has been a member of the MAB since 1995, and he has previously served a term as the Chair. By agreeing to serve again as the Chair of the Foundation’s Medical Advisory Board, Dr. Earley also serves as an ex officio member of the Foundation’s Board of Directors. The RLS Foundation appreciates the expertise and leadership that Dr. Earley brings to our organization! Dr. Earley shared his thoughts on the progress we have made and the challenges we continue to face. “Helen Keller once said that ‘the world is full of suffering, it is also full of overcoming it.’ Those of us you who live with RLS might desire to rephrase the first part of Helen Keller’s quote to read: ‘The night is full of suffering.’ However, what would you put in place of the second part of the statement? Are we ‘full of overcoming it?’” “It will be 16 years ago that I first encountered a patient with Earley article continued on page 27

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RLS Foundation News

Trying to deal with RLS without medication? Make sure you are: • Living a healthy lifestyle. • Eliminating symptom-producing substances. • Taking vitamin and mineral supplements as necessary. • Engaging in activities which help take your mind off of RLS. • Avoiding or eliminating foods or medicines that aggravate your symptoms.

Looking Back Time doesn’t change the frustrations of RLS and the “tricks” we all find to live with it. Check out this flashback to an RLS “Bedtime Story” from April of 1997. The advice is still valuable today: For 20 years or so I have struggled “what to do with those wakeful hours and hours.” From time to time I have tried doing household chores, cleaning off my desk, playing solitaire, putting together puzzles and endless other eye-hand coordinated activities. I have a new one that satisfies me at this juncture. I write—pages and pages. My “kids’ have been after me for years to write some of the stories they have heard and the stories I have not told. The routine is that as soon as the symptoms become evident, I force myself out of bed and take up my pad and pen and start in. I have made a list of stories to tell, and if I am too groggy to think of one, I’ll pick at random and start in. Sometimes they flow off my pen just beautifully with little editing needed. Other times I groan and put that one aside in case it can be redeemed. It doesn’t matter. I am doing something I want to do yet always avoid in the daylight hours. Some night I write for 3 to 4 hours; on others, 30 minutes pass and I’m over the symptoms and go back to sleep. I am not a “writer,” and these stories are not for public consumption, so I have plenty of latitude to just do it. The result being I don’t spend endless hours after midnight wondering what to do. I now have a night job. I have told only one of my “children” and she is enormously pleased. The one who has bugged me the most I have not told—I have to wait for the right moment—I probably when in conversation with my son it may slip out and then all will know. In the meantime, I am content to have it as my panacea for RLS at the present time. I’ve had this too long to know that nothing works forever.

New RLS Three-Season Jacket Look great and stay warm in this three-season jacket available in both men’s and women’s sizes! Men’s jacket is available in dark slate/navy in sizes M, L, and XL. Women’s jacket is available in french blue in sizes M, L, and XL. Price: $75. To order, please go online to download our merchandise catalog or call us at 507-287-6465. _______________________________________________ Earley article continued from page 26

RLS,” he continued. “In that time a tremendous amount of effort and knowledge on the part of doctors, researchers and patients has created new treatments, better education, awareness, and, very importantly, biological certainty that this syndrome is real and not just something ‘in your head.’” “My involvement in the RLS Foundation as a member and now as Chair of the Medical Advisory Board, as well as my clinical and research endeavors, is the best statement I can offer to illustrate my commitment to this syndrome,” said Dr. Earley. “However, there is no one individual who can alone conquer this disorder. It requires a pledge of commitment from all of us: doctors, researchers, patients, and family members.We must all commit to do what we can, in any way that we can, to insure that we are all ‘full of overcoming’ this debilitating syndrome. Together, we can do it!”

Eleanor Power, New Haven, CT www.rls.org

Summer 2007 27

HCP Member Listing Our Healthcare Provider Members The RLS Foundation is now offering a healthcare provider (HCP) membership for those individuals who treat patients who have RLS. This membership is designed to offer HCPs the latest and most relevant information about RLS. Perks of membership include, among many things, a subscription to the bi-annual RLS Scientific Bulletin, PowerPoint presentations on RLS, brochures for their office, and this preferred listing in each summer issue of NightWalkers. The cost is $75 per year in the U.S, $100 per year in Canada, and $125 per year internationally. This list of Healthcare Providers represents a select group of professionals who are not only expressing an interest in treating patients, they are paying for a membership to learn everything they can about RLS. Their specialties are listed in italics. You can also purchase a gift membership for your own HCP. Email [email protected] for more information or call us at 507-287-6465. Please note that this listing does not constitute an endorsement of services. United States Arizona Janet E. Tatman, PhD, PA-C Well Being Systems PLLC 8160 N Hayden Rd Ste J112 Scottsdale, AZ 85258-2467 480-905-8755 Sleep Medicine, Psychiatry, Psychology Philip S. Eichling, MD Southern Arizona Sleep Medicine 3134 N Swan Rd Tucson, AZ 85712-1227 520-323-7000 Sleep Medicine, Internal Medicine California Mark J. Buchfuhrer, MD, FRCP(C), FCCP Downey Regional Medical Center 11480 Brookshire Ave Ste 108 Downey, CA 90241-5020 562-904-1101 Internal Medicine, Sleep Medicine, Pulmonary Medicine Harold R. Smith, MD, FAAN, FAASM University of California, Irvine 4199 Campus Dr Ste 350 Irvine, CA 92612-4690 949-509-7726 Neurology, Sleep Medicine Dr. Delmer W. Henninger, Jr 25405 Hancock Ave Ste 203 Murrieta, CA 92562-5978 909-698-6629 Sleep Disorders, Pulmonary Medicine 28 NightWalkers

Eric Collins, MD Associated Neurology Medical Grp, Inc 365 Hawthorne Ave Ste 203 Oakland, CA 94609-3114 510-834-5778 Neurology Prof. Marcel Hungs, MD, PhD University of California, Irvine 101 The City Drive S Bldg 22C 2nd floor, Rt 23 Orange, CA 92868 714-456-5105 Neurology, Sleep Disorders George Rederich, MD 520 N Prospect Ave Ste 390 Redondo Beach, CA 90277-3041 310-376-9492 Neurology Edivina Gonzales, MD Medical Group Inc. 29798 Haun Rd Ste 106 Sun City, CA 92586-6541 909-301-3588 Internal Medicine Lorne S. Label, MD California Neurological Specialists 2100 Lynn Rd Ste 230 Thousand Oaks, CA 91360-8035 805-497-4500 Neurology Connecticut Alan J. Sholomskas, MD Yale University 2 Whitney Ave Ste 204 New Haven, CT 06510-1220 203-776-2077 Psychiatry, Sleep Medicine

Dominic Roca, MD, PhD Connecticut Center for Sleep Medicine Stanford Hospital Shelburne Rd @ West Broad St 3rd Fl Stanford, CT 06902 203-353-2300 Sleep Medicine Florida Natalio J. Chediak, MD Boca Raton Sleep Disorder Center 660 Glades Rd Ste 220 Boca Raton, FL 33431-6466 561-750-9881 Sleep Medicine John DeCerce, MD University of Florida 580 W 8th St Fl 1 Jacksonville, FL 32209-6533 904-244-9498 Neurology, Sleep Medicine David J. Seiden, MD Broward Research Group 12251 Taft St Ste 301 Pembroke Pines, FL 33026-1956 954-436-2424 Sleep Disorders

Illinois Volker P. Bertrand, DO 655 N La Grange Rd Frankfort, IL 60423-1373 815-469-2888 Neurology Indiana Kenneth N. Wiesert, MD Winona Memorial Hospital 701 E County Line Rd Ste 101 Greenwood, IN 46143-1050 317-782-7800 Sleep Medicine Iowa Scott D. Geisler, MD Physicians Clinic of Iowa 600 7th St SE Cedar Rapids, IA 52401-2112 319-398-1721 Neurology, Sleep Medicine Michael J. Rosenfeld, MD Grinnell Regional Medical Center 210 4th Ave Grinnell, IA 50112-1898 641-236-2905 Neurology

William C. Kohler, MD Florida Sleep Institute 4075 Mariner Blvd Spring Hill, FL 34609-2467 352-683-7885 Sleep Medicine

Kansas Vernon D. Rowe, MD Neurology, Seep Medicine 8550 Marshall Dr Ste 100 Lenexa, KS 66214-9836 913-894-1500 Neurology, Sleep Medicine

Charles Herrera, MD Circadian Amblers 7421 N University Dr Ste 105 Tamarac, FL 33321-6109 954-720-8036 Internal Medicine, Sleep Medicine, Geriatrics

Kentucky James M. Thompson, MD Sleep Disorders Center of Lexington 3121 Wall St Ste 200 Lexington, KY 40513-1711 859-223-9990

www.rls.org

Maine Regis P. Langelier, PhD Seacoast Maine RLS Support Group PO Box 7560 Ocean Park, ME 04063-7560 207-351-5352 Psychology

Howard Goldberg, MD Associates in Pulmonary & Sleep Medicine, Inc. 600 Medical Dr Ste 209 Wentzville, MO 63385-3426 636-332-8482 Sleep Medicine, Pulmonary Medicine

Maryland Helene A. Emsellem, MD Center for Sleep and Wake Disorders 5454 Wisconsin Ave Ste 1725 Chevy Chase, MD 20815-6905 301-654-1575 Neurology, Sleep Medicine

Montana Michael J. Silverglat, MD Missoula Psychological Medicine 910 Brooks St Missoula, MT 59801-5783 406-721-6050

Massachusetts Dr. Cyrus Akbarian Belmont Medical Assoc-Neurology 725 Concord Ave Cambridge, MA 02138-1040 617-864-8822 Michigan John H. Morrison, DO Garden City Hospital 6245 Inkster Rd Garden City, MI 48135-4001 734-458-3330 Sleep Medicine Missouri Oscar A. Schwartz, MD Sleep Medicine Barnes West County 969 N Mason Rd Ste 250 Creve Coeur, MO 63141-6370 (314) 996-8000 Sleep Medicine, Pulmonary Medicine A. Cosmo Caruso, MD Sleep/Pulmonary 1004 Carondelet Dr Ste 410 Kansas City, MO 64114-4801 816-389-6100 Sleep Medicine John H. Brabson, MD Johns Health System 1235 E Cherokee St Springfield, MO 65804-2203 417-820-5467

www.rls.org

Nebraska Gilbert Rude, MD Family Practice Associates 3907 6th Ave Kearney, NE 68845-3392 308-865-2767 Family Medicine New Jersey Arthur S. Walters, MD New Jersey Neuroscience Institute 65 James St Edison, NJ 08820-3947 732-321-7010 Neurology, Sleep Medicine Dr. Vipin Garg Sleep Medicine 210 Williamson St Elizabeth, NJ 07202-3626 908-994-8694 Sleep Disorders Nancy Gonzalez, RPSGT Trinitas Hospital Sleep Disorder Center 210 Williamson St Elizabeth, NJ 07202-3626 908-994-8694 New York Dr. Donald S. Higgins, Jr. Albany Medical College 215 Washington Avenue Ext Albany, NY 12205-5534 518-452-0914 Neurology, Movement Disorders

North Carolina A. Thomas Perkins, MD Raleigh Neurology Associates, PA 1540 Sunday Dr Raleigh, NC 27607-6000 919-782-3456 Neurology, Sleep Medicine

Rhode Island Fred F. Griffith, MD Eastside Neurology, Inc. 450 Veterans Memorial Pkwy East Providence, RI 02914-5300 401-431-1860 Neurology

Kevin M. Klein, MD Klein Neurology and Sleep 222 N Lafayette St Ste 23 Shelby, NC 28150-4450 704-487-7256 Neurology, Sleep Medicine

Tennessee Dr. Jackie Davis Pulmonary Assoc of Kingsport 135 W Ravine Rd Ste 8-A Kingsport, TN 37660-3847 423-247-9075

Ohio Dr. Maureen Delphia Neurology 51 S Souder Ave Ste 2B Columbus, OH 43222-1548 614-224-8062

J. Brevard Haynes, MD Sleep Medicine of Middle TN 300 20th Ave N Ste G8 Nashville, TN 37203-2225 615-284-7533 Sleep Medicine

Oregon Mark T. Gabr, MD, PC 180 Ramsgate Sq S Ste 150 Salem, OR 97302-5867 503-485-0672 Neurology, Sleep Disorders

Texas Margaret E. Mike, MD Sleep Disorders 8700 N Stemmons Fwy Ste 135 Dallas, TX 75247-3723 214-638-4801 Sleep Medicine

Pennsylvania Virginia T. Sherr, MD Neuropsychiatry 47 Crescent Dr Holland, PA 18966-2105 215-322-6567 Psychiatry June M. Fry, MD, PhD Center for Sleep Medicine 443 Germantown Pike Lafayette Hill, PA 19444-1813 610-828-4060 Garry Sussman, DO North Penn Family Med Assoc. 119 Virginia Ave Perkasie, PA 18944-1629 215-257-0159 Family Medicine Neil A. Busis, MD UPMC Shayside-Aiken Medical Bldg 532 S Aiken Ave Ste 507 Pittsburgh, PA 15232-1521 412-681-2000 Neurology

Clint A. Hayes, MD, FACS Vein Center of North Texas 102 Memorial Dr Ste 101 Denison, TX 75020-2001 903-465-7070 Phlebology David Ostransky, DO North Texas Lung & Sleep Clinic, PA 2801 Hulen St Ste 600 Fort Worth, TX 76107-5459 817-731-0230 Sleep Medicine Robert W. Fayle, MD Neurology and Sleep Medicine 1213 Hermann Dr Ste 715 Houston, TX 77004-7028 713-529-1914 Neurology, Sleep Medicine David R. Duhon, JD, MD Sleep Disorders Ctr for Central TX 102 Westlake Dr Ste 102 West Lake Hills, TX 78746-5373 512-329-9296 x204 Sleep Medicine

Summer 2007 29

HCP Member Listing Ashwin Gowda, MD The Sleep Disorders Center of Central Texas 102 Westlake Dr Ste 102 West Lake Hills, TX 78746-5373 512-329-9296 Utah Kirk G. Watkins, MD St. George Sleep Medicine 251 Hilton Dr Ste 107 Saint George, UT 84770-2201 435-634-9630 Family Medicine, Sleep Medicine Virginia Rosier D. Dedwylder, MD King George Family Medical Center 16463 Dahlgren Rd Dahlgren, VA 22448-1359 540-663-2188 Family Practice Linda S. Sigmund, MD Neurology Center of Fairfax 3020 Hamaker Ct Ste 400 Fairfax, VA 22031-2220 703-876-0800 Neurology Eric Sklar, MD Alexandria Fairfax Neurology 8505 Arlington Blvd Ste 450 Fairfax, VA 22031-4630 703-280-1234 Neurology Washington Kimberly A. Mebust, MD Neurology & Neurosurgery Assc of Tacoma 1420 4th St SE Ste A Puyallup, WA 98372-3723 253-848-9656 Neurology, Sleep Medicine Wisconsin Dr. John A. Edwards 2701 E Enterprise Ave Appleton, WI 54913-7729 920-954-2551 Pediatrics

30 NightWalkers

Canada New Brunswick Rachel Morehouse, MD Atlantic Sleep Center 2DS, Level 2 Saint John Regional Hospital St. John, NB E2L 4L2 Canada 506-648-6178 Ontario Jon C. Gatten, DC 181 St. Andrew St. East Upper Level Fegus, ON N1M 1P9 Canada 519-843-1490 John B. Carlile, MB, BCh Psychiatry 235 Brock St Ste 1 Kingston, ON K7L 1S3 Canada 613-547-9172 Psychiatry Erwin Feige, MD Sleep Medicine 104 60 Champlain St North Bay, ON P1B 7M4 Canada 705-472-1967 Michael Hawke, MD Sleep and Neuropsychiatry Sleep and Neuropsychiatry Inst 42345 Sheppard Ave E Unit 208 Scarborough, ON M1S 1T7 Canada 416-292-3218 Sleep Medicine, ENT Iceland Albert Pall Sigurdsson, MD Neurology and Sleep Clinic Landspitali Univ Hospital 108 Reykjavik Fossvogur, Iceland 354-543-1000 New Zealand Andrew Veale, MD Pulmonary and Sleep Center of the Valley Auckland Respiratory & Sleep Service Mercy Specialist Centre New Zealand 64-9-638 5255 Sleep Medicine

Norway Per Egil E. Hesla, MD Spes. Neurologi Box 426 1471 Skarer Lorenskog, Norway 47-23366700

??? Keep Those Questions Coming! Please submit your “Ask the Doctor” questions by email to [email protected] or by mail to RLS Foundation, 1610 14th St NW Suite 300, Rochester, MN 55901. Questions are chosen for print based on available space and applicability to others.

Don’t Miss a Newsletter! We want to make sure you receive your newsletters, so please update your address with us if you move. Send address updates to [email protected] or to RLS Foundation, 1610 14th St NW Suite 300, Rochester, MN 55901. Or give us a call at 507-287-6465.

RLS Awareness Week September 23 - 29, 2007

www.rls.org

RLS Foundation Publications Quantity

Membership In addition to knowing that your membership contributions help support the research and education efforts of the RLS Foundation, you will also receive NightWalkers (the Foundation’s quarterly newsletter), a Medical Bulletin and referral form for your doctor, medical information card, chart stickers, membership card, and free shipping and handling on all publications. U.S.: $25 Canada: $30 Other international delivery: $40

Total

$

Brochures Causes, diagnosis and treatment for the patient living with Restless Legs Syndrome: This brochure (formerly called Living with Restless Legs Syndrome) is written for those with RLS, family members, and others in search of more information about RLS. The brochure highlights symptoms and treatments and identifies secondary causes of RLS. (©2007)

$ free $ free

Medical Bulletin: This material is intended for medical professionals and contains the latest diagnosis and treatment information. (©2005) Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder in Children and Adolescents: A Guide for Healthcare Providers. (©2007)

$ free

Depression and RLS: Special Considerations in Treating Depression when the patient has Restless Legs Syndrome (RLS). (©2007)

$ free

Pregnancy and RLS: Vital Considerations in Treating a Pregnant Patient who has Restless Legs Syndrome (RLS). (©2006)

$ free

Surgery and RLS: Special Considerations for the Surgical Team when the patient has Restless Legs Syndrome (RLS). (©2006)

$ free

2006 Annual Report: This document summarizes programs and activities of the RLS Foundation in 2006. A fiscal year 2006 financial statement is included.

$ free

Books Sleep Thief — Restless Legs Syndrome by Virginia N. Wilson, with Arthur S. Walters, MD, ed: Written by one of the founders of the RLS Foundation, this book contains both a lay perspective of living with RLS and professional essays from a variety of medical experts. All proceeds from this book go to the RLS Foundation. Non members add $5.00 for shipping (©1996) $16.95

$

Products 2007 RLS Foundation Merchandise Brochure: The RLS Foundation is pleased to offer merchandise with our full color logo available for purchase. This free catalog shows our shirts, denim shirts, hooded sweatshirts, caps, and awareness pin.

$ free

RLS Awareness Ribbon Pin $5.00

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Address _____________________________________________ City

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_____________________________________________ * MN residents please add 6.5%

** Non members pay $5.00 shipping for Sleep Thief

Please use the envelope in the center of this newsletter to record and mail your payment.

www.rls.org

Summer 2007 31

Learning to live with RLS • Talk about RLS! Share information with family and friends. • Don’t fight it! Don’t suppress the urge to move. Find an activity that takes your mind off of RLS. • Keep a sleep diary! If you can’t still to write, dictate into a tape recorder. Share observations with your healthcare provider. • Occupy your mind! Find an activity you enjoy to help you through troubling times. • Rise to new levels! Consider elevating your bookstand or desktop to a height that will allow you to stand. • Stretch out your day! Begin and end your day with stretching and gentle massage. • Help others! Consider joining a support group. (See pages 16 & 17 for a complete listing.)

Look inside for more information about the Moonlight Walk for RLS!

Nonprofit Org. U.S. Postage PAID Rochester, MN Permit No. 287

1610 14th St NW Suite 300 Rochester MN 55901 [email protected] www.rls.org

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