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The Power of Comedy
tremor talk Spring/Summer 2008 The MEMBER Magazine of The |International Essential Tremor Foundation The Power ofRobin Comedy Hetro Aspiring comic puts unique spin on her ET experience ET Awareness Group Now on FACEBOOK Tips for a Good Night’s Sleep ET, Exercise and Longevity Investigational Medications for ET Hope through research, awareness and support Tulips for Tremor sponsorship list (as of March 26, 2008) To date, more than $25,000 has been raised through Tulips for Tremor sponsorships. Without the support of these sponsors, the IETF could not afford the nationwide media exposure that will increase awareness about ET. If you are interested in sponsoring Tulips for Tremor 2008, contact the IETF office at 888-387-3667. ESTATE SPONSORSHIP $5,000 AND ABOVE Mr. & Mrs. Stan & Shari Finsilver S pring is in the air at last! I don’t think it can come too quickly for those of us who have experienced the bitter cold and icy conditions this past winter. What better way to welcome spring than to begin work on the second annual Tulips for Tremor campaign? The fundraising campaign runs from July through September, 2008. Remember, proceeds from this annual campaign support the IETF mission to increase awareness and fund research. This year, in addition to offering tulip bulbs, the IETF will offer golf shirts, caps, water bottles, and other items emblazoned with the attractive Tulips for Tremor logo or with the Shaking Up Awareness logo. What we are really excited about though is the specially designed Tulips for Tremor pendant and pin, again based upon the Tulips for Tremor logo. Watch your mail for photos of these items and ordering information. Currently, we’re looking for sponsors to fund the national media awareness campaign. This year the IETF plans to advertise in AARP, Reader’s Digest, and Prevention magazines if funding is available. If you’re interested in becoming a partner sponsor for Tulips for Tremor, please contact the IETF office at 888-387-3667. We hope you will support the efforts of the IETF to reach millions of people with information about ET through your continued membership and participation in Tulips for Tremor. Ms. Jane Gilk Mr. Baron Gordon Mr. & Mrs. Charles Guariglia Mr. & Mrs. Joseph Hanna Mr. Robert Harms TERRACE SPONSORSHIP Mr. William Hartzog $1,000 TO $2,499 Mr. William Heath Mr. & Mrs. Joe Barbee Mr. Harvey Hieken Mr. & Mrs. David Berryhill Mrs. Paul Hein Mr. & Mrs. John Cakebread Mr. Mark Honeyman Ms. Lillian Courtheoux Mr. & Mrs. William Irvine Ms. Mary Gibbons Mr. Edward Jackson Mr. Robert Grahamslaw Ms. Dee Jones Ms. Joyce Keller PATIO SPONSORSHIP Dr. Ann Kenney $500 TO $999 Mr. Harold Kort Mr. Mark Foreman Mrs. Lois Kreider Mr. & Mrs. Martin Holford Mr. & Mrs. James Kuempel Ms. Jeanette Koppelman Mrs. Nancy Lighthall Mr. Mike Mullen Mr. & Mrs. Donald Mr. & Mrs. Herbert Peters Livengood Mr. James Rich Dr. & Mrs. Anthony Lupica Mr. & Mrs. Russ Rosen Dr. Kelly Lyons Mr. Byron Scott Mrs. Lois Mayol Ms. Florence Slater Ms. Elizabeth McQuale Mr. James Thomas Mr. Michael Collins Miller Mr. & Mrs. Gary Ms. Zelna Minear Winterrowd Ms. Nadine Neucks Ms. Dianne Zabel Mr. & Mrs.Stephen Oliva FLOWERBOX SPONSORSHIP Ms. Anita Otis $1 to $499 Mrs. Margaret Packham Mr. & Mrs. Charles Averbook Ms. Mary Ann Parkman Mrs. Pamela Balabuszko-Reay Mr. & Mrs. Bart Pitzer Mr. John Barringer Ms. Mara Robinson Mrs. Mary Jane Bentz Ms. Jeanne Rossini Ms. Donella Boreham Ms. Brenda Sasser Mr. & Mrs. John & Martha Ms. Mary Schmidt Burtis Mrs. Sandra Schroeder Mr. Edward Cavasian Ms. Sara Scroggs Mr. Jim Clark Ms. Rita Sevart Mr. & Mrs. Todd Cole Mr. Dareld Shaver Mr. & Mrs. William Cohen Ms. Dorothy Stevenson Mr. & Mrs. Jack Crocker Ms. Joan Stewart Mr. & Mrs. Richard Crope Mr. David Taylor Mr. & Mrs. Orville Cruea Mr. Walter Telly Mr. Wayne Desselle Mr. & Mrs. Richard Traut Mr. Robert Davis Mr. Philip Wagner Mr. & Mrs. Frank Esposito Mrs. Beverly Wemette Ms. Rita Fields Mr. Bob Wilshek Mr. & Mrs. Thurman Ms. Leta Weiss Fribance Mr. & Mrs. Arthur Williams Mr. Aaron Friedman Ms. Sondra Zorn Mr. James Gallagher Thank you for your support! tremor talk Spring Summer 2008 IETF Board of Directors Peter LeWitt, M.D. President Shari Finsilver Past President L. William Teweles Past President Kelly E. Lyons, Ph.D. Vice President Edward M. Block, Ph.D. Secretary Dean Cavey Treasurer Mark Hallett, M.D. State Senator Terry Link Elan D. Louis, M.D. Celeste Null, M.S. Russ Rosen, M.S.W. W. Douglas Ward, Ph.D. You’ve probably noticed Tremor Talk looks different. Tremor Talk‘s look and format are in transition from a quarterly newsletter into a member magazine to be published twice a year. Changes had to be made after mailing costs increased again, and raising membership dues was simply not the answer to the money crunch. We found it to be more cost effective to increase the number of pages and decrease the number of mailings. In compensation to those members who count on Tremor Talk for all their news about ET, Tremor Talk the member magazine will provide more in-depth articles covering a wider range of topics. In addition, The Scoop, the new IETF member newsletter will fill in the informational gaps between issues of Tremor Talk. The first edition of The Scoop arrived in your homes during February 2008. contents Staff Catherine Rice, M.N.M. Executive Director Debbie Lovelace Tremor Talk Editor Marketing and Public Relations Specialist Dee Ragan Marketing and Public Relations Specialist – Events Carol Rucker Membership Coordinator Medical Advisory Board Roy A. E. Bakay, M.D. Rodger Elble, M.D. Leslie J. Findley, T.D., M.D., FRCP Mark Hallett, M.D. Peter Hedera, M.D. Arif Herekar, M.D. Joseph Jankovic, M.D. Amos D. Korczyn, M.D., M.Sc. Anthony E. Lang, M.D., FRCP(C) Peter LeWitt, M.D. Elan D. Louis, M.D. William Ondo, M.D. A. H. Rajput, M.D., B.D., FRCP(C) Sara S. Salles, D.O. Kapil D. Sethi, M.D., FRCP Mark Stacy, M.D. Claudia M. Testa, M.D., PhD Tremor Talk is published twice a year by the International Tremor Foundation. Please send comments, questions, and story ideas to: IETF Tremor Talk Editor PO Box 14005 Lenexa, Kansas 66285-4005 USA or send an email to: [email protected] This publication is not intended to provide medical advice or be a substitute for qualified medical care. Appropriate treatment for your condition should be obtained from your physician. The content of this publication offers information to those with essential tremor. The IETF does not endorse any product advertised in this publication unless otherwise stated. 2 letter from the executive director 3 coping with ET 4 Honoraria and memorials 8 MAKING a difference 9 et on facebook 10 power of comedy 13 question and answer 14 support groups 16 education events 17 editorial reliable ET information 18 sale order form 19 INVESTIGATIONAL medications 20 membership donations 21 TREATMENT UPDATE Botox® 6 Confidentiality Statement The IETF does not sell or share any member or non-member personal information, including physical addresses, email addresses and phone numbers. ET, Exercise & Longevity letter from the executive director It’s not always just about “me” I sit in a particularly thoughtful mood. It is a winter day, cold and cloudy. Spring is around the corner, and I anxiously await the new season and the hope and new growth it brings. But for some reason, today, I am troubled and I can’t quite put my finger on what has prompted this mood. As usual, money weighs heavily on my mind. I know without enough of it, research proposals will go unfunded, important educational materials won’t be published, postage will be an issue for those who want printed literature, and marketing campaigns to increase awareness will be limited and go unfunded. But today, I’m not thinking so much about those types of things. My mind has turned to establishing a legacy for future generations — a legacy that removes the stigma and stereotypes of ET that cause hurt and misunderstanding. Today, more than ever, I want to find a treatment and a cure to help our children and their children — to save them from the frustration and embarrassment, the ridicule and laughter of others that previous and current generations have had to bear. How many generations will it take for people to acknowledge the difficulties associated with this insidious condition that causes undue psychological harm to so many? I don’t know about you, but I find I do more for my children than I do for myself. I want more for them and will break all the barriers necessary to provide a better life for them. I think that is our nature as humans — to provide for our children, to be nurturing and helpful. So what does all this have to do with me, ET, and the IETF? The IETF is the only organization I know that has gained enough recognition and respect to carry the message of ET to the public, to fund needed research, and to ensure the changes needed to affect our future generations are carried through. It is one clear voice spreading your message near and far about the effects of ET. When I go about my daily responsibilities I see your faces — faces expecting answers and action — not only for yourselves but for future generations. Please know that we cry your tears, feel your heartache, and walk in your footsteps each and every day in search of answers and solutions, knowing you desperately want more now and in the future. We appreciate so much your support no matter how small or large and thank the heavens each time our members reach out of their comfort zones to help or inform someone else about ET. So my deep thoughts and feelings today are about you and doing more for you. Please be assured we will find answers and that the treatment and a cure are foremost in our minds. We will continue to move forward no matter how many steps it takes to change our future generations’ world. Please continue to stand with me as you have done in the past. TOGETHER we can make this happen! Tremor talk SPRING/SUMMER 2008 “Today, more than ever, I want to find a treatment and a cure to help our children and their children — to save them from the frustration and embarrassment, the ridicule and laughter of others that previous and current generations have had to bear. ” Catherine Rice Executive Director Coping with ET Helpful hints for a good night’s sleep Debbie Lovelace Tremor Talk editor Fatigue can make tremor worse, so a good night’s sleep is important in managing ET. But sleep does not always come easily. Short of taking sleeping pills, which potentially can create dependency, some people — the elderly, parents of young children, and those under a great deal of stress, among others — find it almost impossible to fall asleep or to stay asleep. Our culture also encourages habits that make falling asleep difficult. With the invention of the electric light bulb and other modern technologies, work and social life became 24-hour-a-day realities. Poor sleep habits became commonplace and — to a degree — acceptable and even expected. In the long run though, poor sleep hygiene does not add to one’s life, but detracts from it through fatigue and the resulting consequences. Two of those consequences for persons with ET are increased stress and tremor. Following good habits is the first step to better sleep, according to the University of Maryland School of Medicine (www.umm.edu/sleep/sleep.hyg.htm). Here are suggestions for better sleep. Develop a regular sleep schedule. Fall asleep at the same time every night and get up at the same time every morning, even on weekends and holidays. Don’t nap, even in the late afternoon when most people feel sleepy. If you must nap, sleep only 30-45 minutes. Cut off alcohol consumption four to six hours before bedtime. Just as there is a rebound effect when someone has more than one or two drinks to calm tremor, there is a sleep rebound effect from alcohol. When alcohol levels in the blood drop while sleeping, it creates a stimulating effect. Avoid caffeine for four to six hours before bedtime. Other than coffee, this includes teas, sodas, and chocolate. Exercise regularly. Just don’t exercise within two hours of bedtime. Sleep on comfortable bedding. What makes for comfortable bedding is greatly a matter of personal preference, but it is worth finding what makes you comfortable and then using it. Sleep in a cool room. If you are too hot or cold, it is hard to fall asleep. Studies have shown that 65 degrees is the average ideal sleeping temperature, but this is likely a matter of personal preference. Eliminate distracting noise and light. While some people may find the sounds of quiet music or waves relaxing, others will not. Some people can sleep in the middle of a sunny afternoon while others need blackout curtains on their windows at night. Whatever is distracting, eliminate it. Use bed for sleeping and sex only. Don’t work or watch television in bed. Try not to do these things in your bedroom…period. Snack right before bedtime. Warm milk encourages sleep for many people as do foods that contain tryptophan — such as bananas. Don’t eat spicy food though! Relieve anxiety and reduce tension through relaxation before bed. Try a warm bath, deep breathing exercises, or reading. Don’t allow yourself to worry while trying to sleep. This is easier said than done for many people. One technique to stop worrying at inconvenient times is to allow yourself a short period of time during the day to worry and deal with issues. You might even try writing them down and setting them aside to banish them from your mind. Don’t lie in bed awake. If you don’t fall asleep within 15 to 30 minutes, get up and read a book or do something relaxing or boring. Do this also if you wake up in the middle of the night and can’t go back to sleep. Do not watch television, work, or exercise. If you continue to have problems falling asleep or staying asleep, ask your doctor if any of the medications you are taking cause sleeplessness. Sleep problems also occur in relation to depression. If you suspect this could be your problem, talk to your physician about possible solutions. published by the international essential tremor foundation CHARITABLE gifts Honoraria and Memorials Thank you to everyone who has established memorials and contributed funds to honor loved ones on behalf of the IETF this year. We use these contributions to support public awareness about, and research into, ET. Your help is greatly appreciated. (Honoraria or Memorials listed in uppercase, donors listed in italics.) Honorariums ALL ET SUFFERERS Ms. Helen Berky JOAN MARIE BARRINGER Ms. Maria De Fatima De Medeiros DR. BERTHA BLANCHARD & STAFF Mr. & Mrs. Thad Shows DR. PRESTON BOGGESS Mr. Bob Bayer & Ms. Oliver SYLVIA BROCKSTEIN Ms. Heidi Brockstein STEPHEN S. BARNES Mrs. Louise Barnes EZRA MILES COHEN Mr. & Mrs. Stan & Shari Finsilver RICHARD COURTHEOUX Ms. Lillian Courtheoux LILLIAN COURTHEOUX Mr. & Mrs. Richard Courteoux ANDRIE CUMMINGS Ms. Phoebe Lou Doughty SHARI FINSILVER Mr. & Mrs. Gerson Cooper Rabbi Jennifer A. Tisdale Ms. Pamela Nadler Ms. Frances J. Finsilver AMY FRIEDLANDER Ms. Carole R. Friedlander FLORENCE GARNICK Mr. & Mrs. Phillip Sisko COLEEN GEORGE Ms. Debra Ryan JOSEHINE HARDING Mr. Arnold Harding BARBARA & MICHAEL HOROWITZ Mr. & Mrs. Stan & Shari Finsilver ARTHUR KORT Mr. Harold Kort KATHY MCCANN Mr.& Mrs. Stan & Shari Finsilver DALE MCGREGOR Mr. & Mrs. Jim Loftis HELEN C. MCKINLEY Ms. Mary Jane Zarybnisky BRUCE MILEN Mr. & Mrs. Barry Silverman Ms. Denise Kort JUDY A. MILLER Mr. & Mrs. Harold Rosenow SUE MORRISSEY Mr. & Mrs. Stan & Shari Finsilver BEVERLY & HERBERT MYERS Ms. Jeanette S Koppelman TAMRA OZBOLT Mr. David Evans JERRIANNE & STEVE RAINS Ms. Joann McClure CHRISTOPHER RECALT Ms. Jo Recalt JEFF RYAN Mr. Michael Marcroft EDGAR & LEA SEATON 50TH ANNIVERSARY Ms. Gloria Oertie TOM SEXTON, JR. Ms. Celeste Null EE SHACKELFORD Ms. Pat Shackelford SHARON & KATHARINE SPRIGLE Ms. Joan Adair SHELDON STERN Mr. & Mrs. Stan & Shari Finsilver BRAD SMITH Mr. & Mrs. Leo Wilz GIACO TRAGGIO Mr. George Gund LOIS IRENE TUCK Mr. Bruce C. Tuck NEIL WALDMAN Mr. Ed Waldman Memorials MARIE V. ALLENDINGER Mrs. Doris M. Danekind SYLVIA ASH Ms. Roslyn M. Meyer RINNA ANN ATKINS Mr. & Mrs. Larry Abraham Mr. & Mrs. Harlan Ackland Mr. & Mrs. A. Allen Atkins Mr. & Mrs. John Atkins Nadine Atkins Family Susan Atkins Family Mr. & Mrs. Tommy Atkins Mr. & Mrs. David L. Blackwell Mr. & Mrs. Robert Clay Mr. Daniel Davis Mr. & Mrs. Bob Dwyer Ms. Sharon Fannin Ms. Carol A Fricke Ms. Myrna Glaser Mr. & Mrs. Forrest Greer Mr. and Mrs. Robert Hampton Mr. & Mrs. Arthur Hartwell Ms. Grace W. Hornbuckle Mr. Denis Irwin Ms. Helen Irwin Mr. Harold Irwin Mr. & Mrs. William E. Irwin Ms. Nina Miller Mr. & Mrs. William S. Overbey Mr. & Mrs. Merle Perry Mr. & Mrs. David Perry Mr. & Mrs. Ralph Penrod Ms. Lela Slack Mr. & Mrs. William Smoot Mr. & Mrs. Donald Smoot Ms. Eloise A. Stram Ms. Roberta Stanton Ms. Faye Wisdom MAX & LILLIAN BAER Mrs. Barbara J. Yaffe GLADYS BANCOSKY Ms. Mary Ann Parkman JOESPH BEANEY Ms. Phyllis W. Brockett Mr. & Mrs. Richard Brodeur Edward Brothers Ms. Marguerite K. Conlin Mr. & Mrs. Kenneth W. Dearden Mr. & Mrs. Edwin Giles Mr. & Mrs. Frank N. Ferreira Mr. & mrs. Charles J. Giorgi Ms. Doris D. Henley Ms. Thelma Kaminsky Mr. & Mrs. James Nally Mr. Richard J. Noonan Mr. & Mrs. Ralph S. Perkins Tremor talk SPRING/SUMMER 2008 Mr. & Mrs. CF Prentice Ms. Patricia Quaiel Red Rock Brewing Co. Mr. & Mrs. Frank Scimone Ms. Anna M. Seaton Ms. Corinne Smith OTTO BECK Ms. Nancy Klein PAUL E. BEGGROW Mr. Charles H. Damsel EDWARD S. BENTZ Ms. Zeena Abdulahad Mrs. Mary Jane Bentz Ms. Ludmilla Trigos Mr. and Mrs. Larry Wolgast Ms. Robin Wolgast MAX BERSH Mr. & Mrs. Marvin Karp ESTHER WINFREE BREATHITT Mr. Charles H. Damsel ELEANOR BURKE Ms. Cecily Burke ELEANOR CASTLEMAN Mr. & Mrs. Barry Roberts FRANK CASTLEMAN Ms. Susan Roberts FRED CHERRIN Ms. Arlyne Cherrin BERNICE COHEN Mr. Chester Cohen AMOS COLEMAN Ms. Susie Kostecka RAY CUMBIE Ms. Colleen Cumbie JEAN DAVID Mr. and Mrs. Jack Cooper ANTHONY E. DESANCTIS Hartstring, LLC Mr. & Mrs. Jim O’Malley Mr. & Mrs. Theodore Koenig Mr. & Mrs. Sebastian Calvano Mr. & Mrs. Albert M. Sardella Mr. & Mrs. Achille Vicoli Academy of Notre Dame De Namur Mr. & Mrs. Kevin H. Drayer ReMax Ms. Carol Beck Ms. Joy Renfrew Retail Advisory Group Mr. & Mrs. Joe Folz FREDA DIGNAN Mr. & Mrs. Ralph Mastroianni Ms. Kathleen O’Brien KENNETH DIGNAN, SR. Mr. & Mrs. James Berrini Ms. Nancy Castiglione Mr. & Mrs. Roland Desjardins Ms. Mildred Dickinson Mr. & Mrs. Robert Humes Ms. Jean H. Johnson Ms. Janice H. Kennelly Ms. Elizabeth Murray Mr. & Mrs. Patricia Piers Veterans of Foreign Wars PAUL E. DILES Mr. Edward Diles MARTHA DUMLER Mr. & Mrs. Dean Boxberger Mr. & Mrs. James Buller Mr. Dennis W. Dumler Ms. Cynthia Earley Mr. & Mrs. Gary Eichman Ms. Dianne R. Farmer Mr. Wesley Flinn Mr. Brent Gustin Mr. CW Gustin Ms. Catherine Holland Mr. & Mrs. Ronald Hopkins Ms. Patricia K. Lamar Mr. & Mrs. C. Wayne Marietta Mr. & Mrs. Malcolm L. Marshall Mr. Richard Michaelis Mr. & Mrs. Don Michel MARIAN DURAY Mr. and Mrs. Philip J. Mullaney DAVID L. EHRICK Ms. N. Romelle Ehrick VINCENT ESPOSITO Ms. Margaret Esposito MICHAEL & LINDA FARQUAI MOTHER Mr. & Mrs. Barry Roberts WANDA FELLMAN Ms. Marianne Drengson BETTY SUE FINDLAY Ms. Christine S. Monett VELMA GAFFNEY Ms. Juliet Dorn Clopton ROBERT J. GILES Mrs. Mrs. Dorothy Giles Ms. Lillian A. Roth MURIEL GRABER Mr. & Mrs. Mark Lyman MARY GRABOSKI Mr. Byron Scott KENNETH GREEN Ms. Ida E. Green OPAL GROGAN Ms. Jane Bierdeman Fike ROY A. GROSS Ms. Rose Hedrick Mr. & Mrs. John Konscak Mr. & Mrs. Bob Packard MARIAN S. GRUEN Ms. Carol Gruen MARGARET GUTMAN Mr. & Mrs. Barry Roberts RUTH HAGLAGE Mr. Richard A. Haglage E. CONTANCE HATCH Mr. & Mrs. William Garner Ms. Elizabeth A. Schuck ANN GARLAND HEALD Ms. Mary F. Barker Mr. Herbert C. Breeding Dr. & Mrs. H. Preston Boggess Ms. Theresa Houck Mr. Charles Irwin Ms. Norma McGhee Mr. Don McVey Mr. & Mrs. James Morcom Ms. Gladys Martin Mr. Robert W. Moyer Mr. David Reid Ms. Jane Smith ROBERT HENDRICK Mr. Joe D. Barbee DAVE HERBRANDSON Ms. Irene Van Denburgh Memorials (continued) RICH HILLMAN Mr. & Mrs. Marvin G. DeWitt Ms. Jane Donahey Mr. and Mrs. David E. Hankins Ms. Margaret Ventresco Mr. Tyler D. Weisman Mr. Patrick Williams BRADLEY HUTCHEON Mr. Michael McQuillen AVIS IRVINE Ms. Mary O. Gripp Mr. & Mrs. Frank Goddard GLADYS M. JARRETT Mr. & Mrs. George Zook MADELINE JOHNSON Mr. Joe D. Barbee STEPHEN JOHNSON Ms. Mary B. Johnson PETER KAMP Mrs. Emeline Kamp DIANE KAYE Ms. Frances J. Finsilver GLADYS KIERSTEAD Mr. & Mrs. Robert Lee Albrecht Mr. & Mrs. Truman Berry Mr. & Mrs. Zane Gee Mr. and Mrs. Timothy A. Guethler Ms. Kandra Hahn Ms. Doris Kinney Mr. Curtis Edward Maynard Ms. Bonnie K. Meltvedt Mr. & Mrs. Scott Norby Mr. & Mrs. Kurt Prai Ms. Jacque R. Rank Mr. & Mrs. Gil Rank Mr. & Melvin Simpson Mr. Wayne E. Simpson Ms. Zoya L Zeman OLETA KING Ms. Judie Harrell Ms. Alyssa Myres VESTAL KING Ms. Sharon Samson LORI KLINGHER Ms. Janice Polisner WILLIAM KOGLIN Mr. & Mrs. Walter Kessel Mr. & Mrs. Don Koglin Mr. Ray Rosik Mr. & Mrs. William A. Schneider SIDNEY KORT Mr. Harold Kort J IRVIN LAKRITZ Mr. & Mrs. Barry Roberts EAN ROBERT LATHAM Mrs. Martha L. Bass BENJAMIN LEVINE Ms. Denise Kort SYLVIA MURZIN LIPSON Mr. Stanley Lipson MARY CAROLYN LIVINGSTON Ms. Laura Bock Mr. & Mrs. Charlie Carson Ms. Josephine Dill Ms. Celeste Klebba Mr. & Mrs. Homer Maassen Linn Women’s Club Mr. & Mrs. Chris Sanborn ROBERT B. LOEW Mr. & Mrs. Peter Carter MOM LUELLA Ms. Helen Kennelly BILL MCKINLEY Mr. and Mrs. Greg Grafft Ms. Mary Zarybnisky ANNE MCINNIS Mr. & Mrs. Claude S. Bridges BARBARA MARSDEN Mr. & Mrs. Mervin C. Budge Ms. Suzanne Zimmer WILLIAM MARTIN Mrs. Mary M. Chappuis PAULINE COPELAND FINK MATTES Mr. Donald B. Cheetham Ms. Renee Fink Ms. Dessa McCleery Ms. Sheila Armstead Paige MICHAEL MESSITTE Mr. & Mrs. Barry Roberts FRANCIS I. MILLER Mr. Kit Walther Ms. Deborah Stewart EMILY MONTGOMERY Ms. Della W. Lynch HENRY GRADY MOORE Mr. & Mrs. Curtis W. Moore JUNE MURPHY Mr. & Mrs. Gerald Eaton Mr. & Mrs. Arthur Miller Ms. Bobbi A. Humbracht Mr. & Mrs. Joseph Leonardo Ms. Elizabeth A. Fischer Mr. & Mrs. Leonard Doom Mr. & Mrs. James E. Atkinson Mr. & Mrs. Elmer Lindback Ms. Sandra Cramer Ms. Sondra K. Kuhn Mr. Edward F. Murphy Mr. Nathalia Fischer Mr. & Mrs. Edward S. Elles MERLIN MUIR Ms. J. Hammer DAVID MURPH Ms. Rita Johnson JUNE MURPHY Mr. & Mrs. Gerald R. Britten REBECCA MYERS Ms. Janet Dahrsnin HUGH CHANDLER NICHOLS Mr. & Mrs. James Allen Crawford Mr. & Mrs. Al Goodbary Ms. Emily Guffey Richard, Debby & Justin Hall Ms. Kim Kasten URS Corporation Drs. Kent & Carol Olson Ms. Margaret A. Phares Mr. & Mrs. John Russell Mr. & Mrs. Joseph N. Tomlinson CHARLES H. O’BRIAN Ms. Lela O’Brian LYALL T. ODEGARD Mr. & Mrs. Stanley Brett Mr. & Mrs. PJ Callahan Mr. & Mrs. Raymond DeVries Ms. Joan L. Jones Ms. Lynn Lucky Mr. James F. Odegard Mr. & Mrs. Scott Watson LOUIS L. OTTO Mrs. Carol L. Moody Mr. Chris Moody Ms. Dorothy Otto SALLY PEARL Ms. Suzanne Zimmer MARY JANE PERRINE Ms. Joan Robbins MARILYN RACHMIEL Mr. & Mrs. Barry Roberts VIVIAN RAYHILL Mr. Raymond Warman Mrs. Dorothy E. Otto RICHARD RELLO Mr. James Franzosa GRACE RISTOW Mr. & Mrs. Charles Diebele GLORIA RUBIN Ms. Suzanne Zimmer ELSIE EHRMANN SANDLER Ms. Carole Barsdorf JULIUS SAMUELSON Ms. Amy Samuelson RUSSELL SCHAFFER Mrs. Eleanor Schaffer CAROLINE SCHWARTZ Ms. Nancy Beckermedina Mr. Lupe Gonzales Ms. Cynthia A. Singh Mr. William Halsell Ms. Stephanie Batson American College of Emergency Physicians Ms. Angela Franklin Mr. Marshall Gardner Ms. Marta Foster Dallas Bead Society LEONARD SEECH Mr. & Mrs. David Best Ms. Barbara Fischi Mr. David Hamley Mr. & Mrs. John Schavone Ms. Elizabeth Slater Ms. Ruth Steele Mr. & Mrs. Bill Till Mr. & Mrs. Jim Wehner WELDON SHIELDS Mrs. Marleta Crim EARL SHIPPER Mr. & Mrs. Barry Roberts ELEANOR SILK Ms. Susan Roberts RICHARD & HARRY SMILES Ms. Teresa Smiles SHARON SNAVELY Mr. & Mrs. John Cahill MARTHA SOROKA Ms. Frances F. Daymut Mr. David Kent Mr. Ned F. Bauhof Ms. Jean F. Gadd Mr. John E. Gadd Cseko Family Ms. Joy Pate & Mr. Bruce Sherf The General Metals Powder Co. Ms. Michele Nichols Mr. & Mrs. Dean E. Biscan Mr. & Mrs. Richard Hanson Don & Delores Richards Family FRANCES M. STAMBAUGH Mr. Charles H. Damsel WAYNE D. THOMPKINS Mr. & Mrs. Dale Schnoor Ms. Billie Sturgis Mr. & Mrs. Cecil E. Walker Ms. Betty N. Baker Mr. George Dimech Mr. Tom Tompkins Mr. & Mrs. N. Robert Day Ms. Marian Chase Mr. & Mrs. Holly Wagner Ms. Kathlyn Thompkins JOHN B. TRUMPS, SR. Mr. & Mrs. Albert H. Robinson PAULINE VAINSTEIN Ms. Ellen Shapiro N.A. VAUGHTER Mr. David C. Vaughter DON WESTOFF Mr. & Mrs. Bill Myers CHARLOTTE WEINSTEIN Mr. & Mrs. Barry Roberts DOROTHY WILSON Mr. Richard H. Loomis Ms. Doris Silver Durr Mr. & Mrs. Melvin Rosen Mr. & Mrs. Robert Rice DOROTHY WILSON Mr. & Mrs. John W. Wilson Mr. & Mrs. William Cook ALBERT WOLLENBERG Mrs. Lynn Anderson CAROL EPSTEIN YOUNG Mr. Leonard Epstein Presidents Club The IETF would like to recognize and thank the members (our Super Heroes!) of the Presidents Club for their valuable support and leadership. For more information about the Presidents Club, call IETF Executive Director, Catherine Rice, at 888-387-3667. Mr. & Mrs. Joe Barbee Ms. Ricki J. Bell Mr. & Mrs. David Berryhill Mrs. Eleanor Bredvold Mr. Paul Broyhill Capt. Ben C Byrnside Mr. & Mrs. John Cakebread Ms. Lillian A. Courtheoux Mr. Virginia Culver Ms. Gus Davis Mrs. Judith Farrell-Booth Mr. & Mrs. Stanley & Shari Finsilver Ms. Anna Fischer Mr. & Mrs. David Friedman Mr. & Mrs. Richard Frinier Ms. Juanita Froelich Ms. Mary Gibbons Mrs. Dorothy Giles Mr. Robert G. Grahamslaw Ms. Carol Gruen Ms. Gertrude Hankin Mr. Paul Heavener Mr. & Mrs. Martin Holford Ms. Margaret Klein Ms. Jeanette S. Koppelman Mr. & Mrs. Theodore T. Leber Mr. John G. Mancino Ms. Elizabeth McQuale Ms. Stephanie Mendel Mr. Richard M. Morano Mr. & Mrs. Herbert J. Myers Mr. Stewart Noe Mr. & Mrs. Robert Nothwanger Mrs. Joan Robbins Ms. Vivien Augusta Rock Mr. & Mrs. Russ Rosen Mr. Byron Scott Mr. & Mrs. Lee Smith Mr. & Mrs. Alan Spoon Mrs. Joan C. Stearns Ms. Julie Swanson Mr. William L. Teweles Ms. Margaret B. Thaw Mr. Raymond Warman Dr. & Mrs. Douglas Ward Mrs. Leah R. Wickham Ms. Inez Wilson Mr. & Mrs. Gary Winterrowd Mr. Fred M. Young Ms. Leonara Zamuco Ms. Suzanne Zimmer Mr. Alfred G. Zook published by the international essential tremor foundation HEALTH exercise ET, exercise and longevity Although Parkinson disease is different from ET (despite the occasional overlap of the two disorders), studies on exercise in Parkinson disease may be relevant to patients with ET. In a study of 48,574 men and 77,254 women, higher levels of physical activity were associated with lower risk of Parkinson disease [Chen et al, 2005]. Based on systematic literature review, the Practice Recommendations Development Group from The Netherlands concluded there is sufficient evidence to recommend physical therapy and exercise to improve balance, joint mobility, and muscle power and to improve physical capacity of patients with Parkinson disease [Keus et al, 2007]. There are many other studies that provide evidence that exercise may be helpful in improving motor function [Kwakkel et al, 2007], although firm evidence that exercise lowers the risk of Parkinson disease is still lacking [Logroscino et al, 2006]. Exercise may prolong life not only by preventing or reducing the risk of life-threatening disorders but by slowing the aging process. One of the most compelling arguments in favor of exercise as an important anti-aging factor is the recent finding about leukocyte telomere length. The length of telomeres, caps on the end of chromosomes in human DNA, is a biological indicator of human aging. Longer telomere length correlates with exercise as well as increased lifespan. In a study of 2,401 twin volunteers, comprising 2,152 women and 249 men, who were asked to complete detailed questionnaires about their level of physical activity, smoking status, and socioeconomic status, the leukocyte telomere length was 200 nucleotides longer in the most active subjects as compared to the least active subjects during their leisure time (P<.001), even when adjusted for age, sex, body mass index, smoking, socioeconomic status, and physical activity at work. It has been believed for a long time that patients with ET live longer than people without it. The Russian t Any discussion of the management of a chronic disorder would not be complete without emphasizing the importance of physical activity. Exercise has been shown to lower blood pressure, reduce obesity, and prevent cardiovascular disease, but there is little data on the role of exercise in essential tremor (ET). In fact, many patients with ET Joseph Jankovic, MD observe that their tremor markedDistinguished Professor ly increases after strenuous physiEndowed Chair, Director, Parkinson’s Disease Center cal activity or exercise, and they and Movement Disorders understandably wonder if they Clinic, Department of Neushould avoid such activity. rology, Baylor College of Medicine, Houston, Texas As long as there is no cardiac, orthopedic or other condition that creates limitations, patients with ET should remain physically active. Be reassured that worsening of tremor after exercise is expected due to the increase of adrenaline (or epinephrine and norepinephrine) during exercise. Adrenaline, released during any physical or psychological stress, leads to increased muscle activity manifested as worsening of tremor. This effect, however, is temporary and the tremor usually returns to its previous state after a few minutes of rest. Alcohol and propranolol, a beta adrenergic blocker, can reduce stress-induced worsening of ET symptoms; hence the two drugs are often used to “calm” the nervous system. Even professional actors often use propranolol to minimize the tremor effects of anxiety associated with stage fright. Many studies have shown that exercise benefits not only the body but also the brain. It has been shown to improve learning, memory, and depression. It also appears to protect the brain from neurodegeneration. [Cotman et al, 2007]. Exercise continued on page 8 References Cherkas LF, Hunkin JL, Kato BS, Richards JB, Gardner JP, Surdulescu GL, Kimura M, Lu X, Spector TD, Aviv A. The association between physical activity in leisure time and leukocyte telomere length. Arch Intern Med 2008; 168:154-8. Cotman CW, Berchtold NC, Christie LA. Exercise builds brain health: key roles of growth factor cascades and inflammation. Trends Neurosci 2007; 30:464-72. Trends Neurosci 2007; 30:489. Chen H, Zhang SM, Schwarzschild MA, Hernan MA, Ascherio A. Physical activity and the risk of Parkinson disease. Neurology 2005; 64:664-9. Jankovic J, Beach J, Schwartz K, Contant C. Tremor and longevity in relatives of patients with Parkinson’s disease, essential tremor, and control subjects. Neurology 1995; 45:645-8. Keus SH, Bloem BR, Hendriks EJ, Bredero-Cohen AB, Munneke M; Practice Recommendations Development Group. Evidence-based analysis of physical therapy in Parkinson’s disease with recommendations for practice and research. Mov Disord 2007; 22:451-60. Kwakkel G, de Goede CJT, van Wegen EEH. Impact of physical therapy for Parkinson’s disease: A critical review of the literature. Parkinsonism and Related Disorders 2007; 13:S478-S487. Logroscino G. The role of early life environmental risk factors in Parkinson disease: what is the evidence? Environ Health Perspect. 2005; 113:1234-1238. Tremor talk SPRING/SUMMER 2008 More opinions on exercise and ET Bilodeau and coworkers (Muscle Nerve 2000; 23: 771-778) performed a small pilot study of the effect of exercise on ET and found that strength training reduced tremor, at least temporarily. Light resistance exercise did not help. The long-term effects of exercise are not known. Some patients experience a transient increase in tremor during fatigue after exercise. The long-term effects of heavy resistance training should be studied further. Rodger Elble, MD Southern Illinois University School of Medicine To date, limited research has been completed in the role of exercise and individuals with ET. A small study in individuals with ET has demonstrated the benefit of strength training with improvement of hand steadiness. Overall, there are numerous advantages in exercising three to five days per week for at least 30 minutes. Exercise improves overall health including core body strengthening which in the long term improves balance and movement and decreases the number of falls. In addition, recent studies have demonstrated improvements in cognition, and brain “health” not to mention the continued benefits to cardiovascular improvements that are seen with exercise on a regular basis. Sara Salles, DO University of Kentucky Physical Medicine and Rehabilitation published by the international essential tremor foundation Making a difference The power of ONE Debbie Lovelace, Tremor Talk editor son Norma Law t It started as a simple act of courage by one person, and it turned into something quite powerful, potentially affecting hundreds of people who have ET as well as their families. Norma Lawson of Mesa, AZ, a Phoenix suburb, called the IETF and requested 10 copies of The Patient Handbook so she could give them to physicians in her community. Having had ET for as long as she could remember, Norma wanted to do whatever she could to educate people about ET. “It really was something small, but I wanted to do what I could do,” explained Norma. But what Norma did next proves that the seemingly inconsequential action of one person can have powerful effects. Norma took a brochure into the human resources manager at the WalMart in Chandler, AZ, another Phoenix suburb, where she has worked for 10 years answering the phone and attending the fitting rooms. This Wal-Mart, just like Wal-Marts everywhere, has a policy of giving within the community it serves. According to Wal-Mart’s website, more than 90% of Wal-Mart donations are made at this level. In honor of Norma, the Chandler, AZ, Wal-Mart donated $850 to the IETF. But that’s only the beginning of this story. Catherine (Cathy) Rice, IETF Executive Director, called Norma and asked her how she wanted the money to be spent. After thinking about it a short time, Norma said she had wanted to attend past community education events in the Phoenix area but couldn’t because the events were held on Fridays and Saturdays when she was scheduled to work. Continued from Exercise page 6 neurologist, Minor, suggested in 1935 “that a factor for longevity was also contained in the tremor gamete.” In a study published in 1995 it was found that parents of ET patients who experienced tremor lived on the average 9.2 years longer than those parents who did not have tremor. Because the parents with tremor who lived longer probably had ET, it was concluded that ET confers some anti-aging influence and significantly increases longevity. While there is no obvious explanation for this striking observation, it is possible that: The March 20 community education event in Chandler was a direct result of the “small” effort by Norma Lawson to do what she saw as her part in raising awareness about ET. More than 90 people attended the Chandler event and Norma Lawson was the guest of honor. But Norma’s vision about what she wants to see happen doesn’t end with this event. Her ET vision is the development of a standardized ET occupational therapy treatment program. “My doctor sent me for occupational therapy to learn new ways of coping with my worsening tremor, and I ended up teaching the young man more than he taught me,” said Norma. “He knew nothing about ET.” The realization that ET is not well known within the general public as well as the medical community is daunting. It’s enough to bring despair and cause many to throw their hands up in defeat. But Norma’s story is a reminder that small acts by one person can have far-reaching effects and that you can never predict which small act of courage will lead to a major breakthrough in raising awareness about ET. To receive 10 copies of The Patient Handbook to distribute within your community, contact the IETF toll-free at 1-888-387-3667 or email [email protected]. Tremor talk SPRING/SUMMER 2008 • Patients with ET have an underlying personality trait that encourages dietary, occupational, and physical habits that promote longevity, • The small amounts of alcohol consumed to calm tremor might prolong life, or • Tremor itself might be viewed as a form of exercise that would have beneficial effects on general health and on longevity. Further studies are needed on the potential anti-aging effects of ET and whether exercise confers additional benefits by favorably modifying the course of the disease. ET awareness group on facebook Debbie Lovelace Tremor Talk editor Facebook describes itself as “a social utility that connects people with friends and others who work, study and live around them.” In other words, Facebook provides the InterBeals Tim and Lisa net tools and space to create virtual communities, including The Essential Tremor Awareness Group. Many people with ET feel isolated — self-confined inside According to Tim, the group now has 49 members. When their homes — because of the embarrassment their tremlooking at the pictures and reading the information provided or causes them in public. Having been diagnosed with ET by the members, one notes that most are college students at the age of 12, Tim Beals, 30, understands a thing or two from around the world. The faces of these members are not about isolation. But for him that solitary feeling is not caused the stereotypical faces often portrayed by media as being perby ET. sons with ET. They are not elderly. Tim and Lisa, his wife of two years, live on Prince Edward Although the group was formed primarily as a means to Island, Canada’s smallest province located east of Maine, past spread information, Tim also receives benefits through the New Brunswick, and beyond the choppy waters of the Norsharing that occurs. thumberland Strait. With only 135,851 res“The biggest satisfaction for me so far has My Earthquake! idents and a single bridge connecting the been to hear other people’s stories. It’s nice to island to the rest the continent, Prince Edward talk with others who can relate to what you’re My hand started to shake, I was only fourteen. Island is naturally isolated. going through,” said Tim. “I’ve also been reMy hands started to shake, Like many rural areas anywhere in the ally impressed with the number of people what did this mean? world, there are no neurologists on Prince Edwho have supported me. My family, friends Can’t shake it off, ward Island who specialize in ET. When Tim’s and co-workers have been a great source of its like a bad curse. family doctor finally did send him to see a encouragement.” When I try it only gets worse. neurologist because his tremor was getting Because of the satisfaction he receives They call it a tremor, worse, Tim was told what he already knew. through the group, Tim has high hopes for like a force of nature. He had ET. its future. Like an earthquake inside me, an uncontrollable creature Last fall, while searching the Internet “I am sure we would have many more for information on ET, Tim found the IETF An earthquake can cause members if more people knew about the the world to shake. website (www.essentialtremor.org). Accordgroup. I’m hoping this exposure in Tremor ing to Tim, he then became inspired to help It’s my whole world thats shakes, Talk will help our numbers to grow even largmy hands, my earthquake! others become more aware of ET. er,” said Tim. “Anyone is more than welcome Chris Potter, Specifically, he saw the way and means to to join this group. It would be more benefiFacebook Member increase awareness about ET by making use of cial for those affected by ET, their friends, and the Internet’s ability to connect people who exchange knowlfamilies to become members. However those who have quesedge and share experiences. In November 2007, Tim created tions about ET or about the group are also welcome to join.” The Essential Tremor Awareness Group on Facebook. To visit The Essential Tremor Awareness Group go to www. “As someone who suffers from ET, I am willing to speak facebook.com, register, choose groups from the menu, enter and share my knowledge with anyone about my condition. “Essential Tremor” in the search bar and hit Enter on the your I have found people to be very responsive and supportive keyboard. You do not have to post any pictures or informawhen they understand more about ET,” said Tim. tion about yourself when you register. published by the international essential tremor foundation inspirational cover story robin Hetro: Truth-telling about ET with a comic touch Comedy, according to Robin Hetro, has power. “In our politically correct world, the comedy stage is still a place for free speech and free expression,” explains Robin. “Even in medieval times, it was only the jester who could speak the truth to the king . . . and live.” Robin should know. She plays the jester and speaks the truth many nights a week as a stand-up comic in the westcentral Florida area. Usually Robin opens her routine with this: “For those of you prone to motion sickness please don’t make my microphone your focal point. My hands are about as steady as a caffeine junkie’s.” Sometimes she worries that her hands are not shaking enough to pull off the joke, but, according to Robin, the audience really can not miss her reference. Openly addressing her shaking hands provides Robin an opportunity to tell the audience she is not nervous, not anxious, not withdrawing from alcohol but has a medical condition called essential tremor (ET). According to Robin, it also allows her to calm down and concentrate on doing what she loves most — making people laugh. And making people laugh is something Robin has dreamed about since she was a child watching her idols on television. “I loved watching Carol Burnett. She was very real and genuine with the audience. I would love to have the ease that she conveyed on stage,” says Robin. “I also loved Gilda Radner. I can remember laughing until I couldn’t breathe when she did Rosanne Rosanna Danna on Saturday Night Live.” During the 1980s, Robin looked to women stand-up comics for inspiration, including Elaine Boosler, Rita Rudner, and Ellen DeGeneres. “They all had offbeat comedy,” explains Robin. “It wasn’t aggressive like some of the men comics at the time. Their material was clever and the punch lines were never obvious.” As a mature professional, Robins says her favorite comic today is Chris Rock. 10 Tremor talk SPRING/SUMMER 2008 “Chris’s comedy is about his world and his take on it. That is what good comedy does. It tells your story and lets the audience see the world through your eyes,” says Robin. But Robin almost passed up the opportunity to tell her story, to share her world with audiences so they could see it though her eyes. According to Robin, for years she was concerned that people would focus on her shaking hands instead of her comedy and that they would make those dreaded assumptions. Her fear was not based upon unproven and unrealistic expectations; it was based on difficult personal experiences. According to Robin, she can always remember having tremor, and from the beginning, people made jokes and comments about her shaking hands. This caused a great deal of anxiety for her, and she dreaded the typical grammar school experiences of giving presentations while holding a shaking piece of paper in her hand or writing on the chalkboard. It was particularly embarrassing when adults would order her to hold out her hands so they could see her shaking. “The last thing I wanted to do as a kid was to put my differences on display!” says Robin. As an adult working as a corporate trainer, her shaking hands attracted a more serious and hurtful kind of attention than jokes, comments, and insensitive demands. One whole class went to human resources to complain about her. “They felt my shaking was a sign of my insecurity,” says Robin. “They requested a new trainer who was more comfortable in her position.” Human resources contacted her supervisor who told Robin she had to address the issue with the class. From then on, according to Robin, she told every class on the first day about her ET. “It made me angry at first, but I realized that once I addressed the tremor it became a non-issue,” says Robin. Another time Robin was in a college interview when the frightened-looking recruiter interrupted her, asking t Debbie Lovelace Tremor Talk editor t why she was shaking. When she explained she had ET, he did not believe her and ended the interview. “It was the weirdest feeling,” says Robin. “I felt obligated to prove I wasn’t weird or frightening, but the more I tried, the more frightened he became.” Another concern Robin had as a young, single, dating adult was what a man would think when first seeing her shaking hands, but eventually one of those first dates led to a wedding. “When I got married, my dress was making noise because I was shaking so hard, and I faked lighting my side of the unity candle, my hands were so bad,” remembers Robin. Soon Robin became a full-time, work-at-home mother, and her dream of being a stand-up comic faded. But, according to Robin, during this time of limited social contact, she began to wonder if the time to follow her childhood dream had passed. One day Robin saw an advertisement in the local newspaper for comedy classes and decided it was time to put up or shut up. She enrolled. After several weeks, Robin went for her first open-mic night, a time when a comedy club literally opens its microphone to anyone brave enough to come up on stage. According to Robin, this first experience as a comic was “horrible!” There was not even one laugh. This would probably be enough to discourage most people from ever going on stage again, but Robin took it as a challenge and refused to quit until she got at least one laugh. In a couple of months, she got her first real laughs, and by then she was addicted. All artists struggle to find their authentic voices. But this struggle was intensified by Robin early on because she was trying to hide her ET. She utilized a number of techniques from holding the microphone in both hands to holding on to the microphone stand, but nothing hid her tremor. Eventually, with encouragement from other comics, she decided to incorporate her ET into her material, but she was soon discouraged by the awkwardness she felt and by the fact that no one laughed. published by the international essential tremor foundation 11 inspirational cover story “I felt uncomfortable making light of it,” says Robin. “It’s so hard to find great humor in something that has caused so much embarrassment!” Then, says Robin, “Something amazing happened!” Other comics and club owners who had seen her material and didn’t laugh kept telling her to return to her tremor jokes. So, Robin retooled them. This time they worked. They got laughs. But this was not the amazing part. “I have other comics calling my shaking ‘essential tremor’, not my ‘nervousness,’ not my ‘shaking,’ but ‘essential tremor,’ says Robin. “I am quite proud that people are starting to call it by its name. If nothing else, I am making it a part of the vocabulary in my little corner of the world in west-central Florida. Since first taking the stage, Robin has met other comics and musicians who have ET. “They usually approach me after my set and tell me that ET is something they deal with as well,” explains Robin. “I met an incredible guitar player who has ET. He really struggles after he has played a while. It’s hard for him to do much until he gives his hands a rest.” When Robin realized the educational value of telling the truth of living with shaking hands, she researched ET on the Internet and found the IETF. Like most people, she assumed the foundation was huge. “It had all the earmarks of a large organization, including an informative website and a newsletter I always found interesting,” says Robin. But Robin took her research one step farther than most people. When visiting relatives in the Kansas City area, she called and made an appointment to visit the IETF. When she arrived, she was surprised to find four people, all women, working in a small, no-frills office. After visiting with the staff for a little while, Robin was impressed. “The IETF epitomizes the analogy of a pretty duck,” says Robin. “They look sleek and graceful on top of the water, but underneath they are paddling their scrawny little legs off!” According to Robin, the IETF helped her realize that she is not alone. The IETF was impressed with Robin too, and offered her one of the first Community Ambassadorships. But Robin felt she could serve the ET community from the stage through her brand of education – comedy. And Robin has a message to share with everyone with ET. “I want people to know that they should live their dreams and be who they are supposed to be, regardless of their condition. It took me 36 years to muster up the courage to get on a comedy stage. Once I set foot on it, I realized that is where I was meant to be, tremor be damned.” Robin tells her truth by playing the jester on stage. To learn more about Robin… Visit her website at www.kwirkybird.com or see a live streaming video of her on stage at: http://vids.myspace. com/index.cfm?fuse action=vids.individual& VideoID=26113256. Up-and-coming comic Lester Bibbs compares notes with Robin. 12 Tremor talk SPRING/SUMMER 2008 ET fact sheet • Essential tremor (ET) is a neurological disorder that causes hands to shake, heads to bob, and voices to quaver. For some people it can also cause legs, the trunk, and even internal organs to quiver. • It is estimated that up to 10 million Americans have ET. • Although there are many possible causes of tremor, ET is the most common. Still, misdiagnosis of tremor is a problem. According to the Canadian Journal of Neuroscience, general neurologists treating tremor have a diagnostic error rate of 25% to 35%. • ET is often misdiagnosed as Parkinson’s disease, yet according to the National Institutes of Neurological Disorders and Stroke, eight times as many people have ET as have Parkinson’s. • It is false to assume that ET is confined to the elderly. Children and middle-aged people can also develop ET. In fact, newborns have been diagnosed with the condition. • Abnormal communication between certain areas of the brain leads to the symptoms of ET. • There is evidence that ET is genetic. Each child of a parent who has ET has a 50% chance of inheriting a gene that causes the condition. At times, however, people with no known family history of tremor develop ET. In some cases, this is because family members have been silent carriers of the gene, and have no visible symptoms. • There are few effective medical treatments available for ET. Unfortunately, it is estimated that fewer than 60% of people with ET are helped by these medications. • Researchers estimate that 4% to 5% percent of people aged 40 to 60 have ET. The incidence rate for people age 60 and older is estimated at 6.3% to 9%. • People who have ET become disabled at worst and feel frustrated or embarrassed at best. • Quality of life becomes a big issue for people with ET as activities of daily life such as feeding, grooming, or even writing become difficult if not impossible. • Many people with ET are too embarrassed to go out in public and so remain isolated in their homes Question & answer Question: Is hearing impairment associated with ET? Answer: Based on the evaluation of thousands of patients with ET over the Joseph Jankovic, MD Distinguished Professor past three decades, I have noted that Endowed Chair, Director, an unusually high number of people Parkinson’s Disease Center have hearing loss. This clinical ob- and Movement Disorders servation was confirmed by demon- Clinic, Department of Neustrating a statistically significant high rology, Baylor College of Medicine, Houston, Texas occurrence of partial or complete deafness in patients with ET (Ondo et al., 2003). In a study of 250 patients with ET conducted at Baylor College of Medicine it was found that 16.8 percent wore hearing aids, compared to only 1.6 percent of control Parkinson’s patients and 0.8 percent of healthy controls. Furthermore, pure-tone hearing testing demonstrated age-dependent, high-frequency loss among patients with ET as compared to the general population. The initial observation of high risk of hearing loss among patients with ET has since been confirmed by other studies (Karmody et al., 2005; Benito-Leon et al., 2008). Benito-León J, Louis ED, Bermejo-Pareja F; Neurological Disorders in Central Spain (NEDICES) Study Group. Reported hearing impairment in essential tremor: a population-based case-control study. Neuroepidemiology 2007; 29:213-7. Karmody CS, Blevins NH, Lalwani AK. Sensorineural hearing loss, early greying, and essential tremor: a new hereditary syndrome? Otolaryngol Head Neck Surg 2005; 133:94-9. Ondo WG, Sutton L, Dat Vuong K, Lai D, Jankovic J. Hearing impairment in essential tremor. Neurology 2003; 61:1093-7. published by the international essential tremor foundation 13 support groups Thank you for your support! Below is a listing of persons who have made membership donations during each year of the past seven years. Your loyalty and support of the ET community is appreciated! Mrs. Mona Adelson Dr. & Mrs. Stephen Aldrich Mrs. Audrey Allen Mrs. Dorothy Ayers Mr. & Mrs. Dave Bame Mr. & Mrs. C Ellis Barham Mr. & Mrs. Mary Barker Mr. Donald Barrett Mr. & Mrs. Robert Benson Mr. & Mrs. David Beebee Mrs. Mary Jane Bentz Mrs. Helen Berky Mr. & Mrs. David Berryhill Mr. Arthur Birnbaum Mrs. Nancy Bishop Mrs. Phyllis Bollinger Mr. & Mrs. Edward Bourguignon Ms. Mary Boxley Mrs. June Bradley Mrs. Robert Bradley Mr. & Mrs. Elmer Brown Mr. Paul Broyhill Mr. & Mrs. Gladys Bryant Mr. & Mrs. Jack Budyszewick Mr. & Mrs. Gary Burlingame Ms. Carolyn Cadwallader Mr. & Mrs. George Capulos Ms. Paula Caccavo Ms. Elizabeth Canning Mr. Edward Cavasian Mr. & Mrs. Lyle Clark Mr. & Mrs. Jim Clark Mr. & Mrs. Jonathan Clayton Mr. & Mrs. Ray Clifton Mr. & Mrs. Kenneth Cline Mr. William Cole Ms. Jean Coleman Mr. & Mrs. Eldo Corgnati Mr. & Mrs. Harry Coulter Ms. Lillian Courtheoux Mrs. Elizabeth Creisler Ms. Sue Crenshaw Mrs. Mildred Cronin Mr. & Mrs. Orville Cruea Mr. Charles Damsel Mr. James Davis Mrs. Linda Davis Mr. Robert Davis Mrs. Blondell Davison Mr. & Mrs. Eugene DeNagel Mrs. Gertrude Edzant Mr. & Mrs. Arthur Elder Mr. & Mrs. LW Erickson Ms. Mary Erzinger Mr. & Mrs. Frank Esposito Mrs. Bernice Deslippe Mr. Eley Denson Mrs. Joan DeWall Mr. & Mrs. James Diamond Mrs. Patricia Dreyling Mr. Howard Ducoff Mr. & Mrs. Herbert Duval Mr. & Mrs. Robert Evans Mr. & Mrs. Keith Everson Mrs. Anne Fensom Mr. and Mrs. Stan & Shari Finsilver Ms. John Fitch Mrs. Carolyn Fitzsimmons Mrs. Sylvia Forman Mr. & Mrs. Aaron Friedman Mrs. Barbara Friedman Mr. Virgil Fraley Mr. Gerard Garland Mr. & Mrs. Gerald Gillespie Mr. & Mrs. Arthur Goldin Mr. & Mrs. Glenn Griffin Mr. & Mrs. Charles Guariglia Ms. Verna Gabriel Mr. & Mrs. Wayne Gidel Mrs. Dorothy Giles Mr. Baron Gordon 14 Ms. Lorraine Haas Mr. & Mrs. Harvey Haber Ms. Jackson Hambley Ms. Virginia Hampton Ms. Joan Hansen Mr. & Mrs. Robert Harms Ms. Maxine Harris Mr. & Mrs. Daniel Hall Mr. & Mrs. William Hartzog Mrs. Carol Hayward Mrs. Ruth Herman Mr. Theodore Hinchman Ms. Ruby Howe Mr. Harvey Hieken Mr. & Mrs. Martin Holford Ms. Agnes Hollander Mr. & Mrs. Lee Huffman Mr. & Mrs. Edward Humphreys Ms. Mary Hydeman Mr. & Mrs. William Irvine Mr. & Mrs. Allen Janis Mrs. Phyllis Jarosz Mr. & Mrs. Henry Johansen Mr. Virgil Johnson Mr. & Mrs. Joseph Karlesky Mr. Richard Kauffman Mr. & Mrs. Jack Katz Dr. Ann Kenney Mrs. Naomi King Mrs. Joyce Klass Mrs. Anne Klein Ms. Juliana Koss Mrs. Natalie Kusilek Ms. Pamela Lamson Ms. Evelyn Lawrence Ms. Dorothy Lewis Mr. & Mrs. Michael Libman Mrs. Nancy Lighthall Ms. Linda Linder Ms. M Lorene Lisk Mr. & Mrs. Donald Livengood Ms. Eunice Loots Ms. Carol Luck Mrs. Linda Lucks Ms. Martha Lydon Mr. & Mrs. Donn McCashland Ms. Elizabeth McClain Ms. Eileen McConnell Mrs. Meck McDonald Mrs. Nancy McDonough Mr. & Mrs. John McIntosh Mr. Bernard McGivney Mr. Delbert McNew Mrs. Lois McNulty Mrs. Helen Maki Mr. & Mrs. Oscar Martin Mr. & Mrs. James Mathew Ms. Elena Mattson Miss. Veronica Merwin Mrs. Eileen Mikula Mr. Ernest Miller Ms. Genevieve Mills Ms. Zelna Minear Mr. Howard Mirsky Mr. & Mrs. Richard Moen Mr. & Mrs. Stanley Moberg Mr. Marvin Moffie Mr. & Mrs. Iris Morgan Mr. & Mrs. Dale Morrison Mrs. Elaine Moskowitz Mr. & Mrs. Allan Moum Mr. Robert Moyer Ms. Dorothy Nellis Mr. & Mrs. Eli Nelson Mrs. Mary Nelson Mr. & Mrs. John Norcross Dr. & Mrs. Harry Oberhelman Mr. & Mrs. Stephen Oliva Ms. Loide Olson Mrs. Alison O’Reilly Ms. Barbara Pachal Tremor talk SPRING/SUMMER 2008 Mr. Harry Parrell Ms. Lilian Patrick Ms. Joyce Pearce Ms. Patricia Peterson Mr. & Mrs. Geza Petro Mrs. Norma Pfeifer Mr. Robert Phillips Ms. Dorothy Potts Mrs. Della Prater Mr. & Mrs. Richard Prince Ms. Eugenia Pugh Mr. & Mrs. Steve Quandt Mrs. Janet Raether Dr. & Mrs. Saifuddin Rasiwala Mr. Charles Rehm Ms. Margaret Reichert Mr. & Mrs. Robert Richardson Ms. Norma Richardville Mrs. Sarah Roberts Mrs. Avah Robinson Mr. & Mrs. Albert Robinson Mrs. Doris Rohling Ms. Yolanda Ruhl Ms. Edith Sagul Mr. & Mrs. Oscar Samson Mr. & Mrs. Henrietta Schoepflin Ms. Elsie Schroeder Ms. Sandra Schroeder Mrs. Rosalind Schulkin Mr. & Mrs. Robert Schurrer Dr. Charley Scott Ms. Margaret Swartz Mrs. Barbara Shalvey Mrs. Vernie Shaw Mrs. Marjorie Shepherd Mr. & Mrs. James Shimwell Ms. Erma Snyder Mr. & Mrs. Arnold Spielbauer Ms. Shirley Spurgeon Mr. & Mrs. Oscar Stanton Mrs. Verona Sterr Ms. Joan Stewart Mr. & Mrs. Austin Stibbe Ms. Doris Still Mr. & Mrs. James Stolley Mr. & Mrs. James Stoever Mr. and Mrs. Martin Sullivan Ms. Mary Etta Swayne Ms. Frances Talbott-White Mr. Trudy Taylor Mrs. & Mrs. Chris Templeton Mrs. Sylvia Thal Mr. & Mrs. Wilbert Thee Ms. Lacy Thompson Mrs. Eleanor Thomson Mr. & Mrs. Zane Trinkley Mr. Richard Troutman Mr. & Mrs. Walter Telly Ms. May Tomiak Ms. Pauline Utz Ms. Mary Vail Mr. & Mrs. Joseph Vernon Mr. & Mrs. Stanley Vickers Ms. Marilyn Vogel Mr. Philip Wagner Ms. Elizabeth Ward Mr. Raymond Warman Mr. & Mrs. George Wiedmiller Mrs. Beverly Wemette Mr. & Mrs. Arthur Williams Ms. Joyce Wilson Mr. & Mrs. Darrell Winslow Mr. & Mrs. Gary Winterrowd Mrs. Regina Woronowicz Mrs. Barbara Young-Hulse Mr. & Mrs. Robert Zalman Ms. Marion Zalon Mr. & Mrs. Tom Zanetos Mrs. Lola Zimmerman Mr. & Mrs. George Zook What is an ET support group? • An ET support group is an informal, self-managed, self-help group. It is not a therapy group or 12-step program. It is run by and for people who have ET or who have a family member or friend who has ET. • An ET support group is a place to be you. The group is a place where people feel welcome and accepted, can talk openly, and can exchange ideas about the challenges of living with ET. It is a place where privacy and confidentiality are respected. • An ET support group is a source of information and practical suggestions about ET and about the IETF. It is not a substitute for medical treatment or for personal or health counseling. • An ET support group is a circle of friends. It is a place to talk, laugh, and empathize about life with ET with people who will listen, laugh, and empathize too. • An ET support group is as unique as its members. The interests and capabilities of support group members vary greatly and change over time. It is not uniformity that counts, or meeting a standard. Rather, it is making the most of what each group has to offer its members at any given time. For information on starting a support group in your area, contact Dee Ragan, [email protected] or call toll-free 1-888-387-3667. Support group list — more than Madison/Huntsville, AL Jan Barefield 256/864-2850 Prescott, AZ Sherry Moore (co-leader) 928-778-5330 Judy Veney (co-leader) 926/442-0052 [email protected] Sun City, AZ Barbara Goddard 623/933-5703 [email protected] Sun Lakes, AZ Jane Limbaugh 480/883-1766 [email protected] Tucson, AZ Billy Wright 520/886-1838 [email protected] Orange County, CA Vanessa Madrigal 949-305-7122 [email protected] Los Angeles, CA Robert Kribs (co-leader) 310/276-6875 [email protected] Alta Rudomin (co-leader) 818/700-1876 [email protected] Redland, CA Stella Hollebeek 909/794-2609 San Gabriel, CA Jennifer Birch 626/535-9552 [email protected] Daytona Beach, FL Lloyd Dunham 386/761-6509 [email protected] Sunderlind, MD Linda Coty 410-535-3509 [email protected] Fort Worth, TX Bob Fisher 817/478-6194 [email protected] Lady Lake, FL Phyllis Bach 352/347-5028 [email protected] Baltimore, MD Alle Cyhan 410/303-7660 [email protected] El Paso, TX Nancy Drumheller 915/821-3125 [email protected] West Palm Beach/ Wellington, FL Richard Cusati 561/827-2974 Saginaw, MI Carol Jerome 989/799-5413 [email protected] Atlanta, GA Lynn Ross, LMSW 404-728-6300 [email protected] St. Louis, MO Harold Bruner (co-leader) 314/487-7407 [email protected] Sonia Watkins (co-leader) 314/832-3901 San Antonio, TX Charline Wedemeyer 210/673-1482 210/632-0384 [email protected] James Tremblay 210/590-9181 210/590-9279 [email protected] Cedar Rapids, IA Noma Lucas 319/377-5931 [email protected] Boise, ID Sue Ahlefeld 208/272-0079 Chicago, IL Diane Breslow Northwestern University Hospital 312/503-4397 [email protected] Peoria, IL Janet Danielson 309/397-1515 [email protected] West Suburban Chicago, IL Dr. Douglas Ward 630/790-1342 [email protected] San Ramon/East Bay, CA Sharon Alexander 925/487-5706 [email protected] Northbrook, IL Gladys Keats (co-leader) 847/559-1779 [email protected] Howard Mirsky 847/398-3378 [email protected] San Jose, CA Shirley Rittgers 408/274-1393 [email protected] Munster, IN Donn Davidson 219/712-7063 [email protected] Standford, CA Lois Sumner Standford University Medical Center 650/328-2998 [email protected] Wichita, KS Rita Sevart 316/796-0769 316/210-6544 [email protected] Marvin Daniels 316/260-7958 [email protected] Sunnyvale, CA Phyllis Souza 408/247-7335 [email protected] Colorado, Northern Hugh Beckham 970/586-6931 [email protected] Lewes, DE Dave Bame (co-leader) 302/645-8813 [email protected] Nancy Brumbley (co-leader) 302/539-8653 60 locations! Cape Code, MA Robert Reddy 508/457-9025 [email protected] Springfield, MA Judith Kennedy 413/594-7674 [email protected] Silver Spring, MD Dan Miller 301/384-1139 [email protected] Asheville, NC Howard Henze 828/687-2356 [email protected] Charlotte, NC Clifford DeCamp 704/521-8103 [email protected] Wilmington, NC Tony Homcy 910/452-1634 [email protected] Aurora, OH Bob Wagner 330/995-0462 [email protected] Newark, OH Vicki Bolander 740/323-4434 Dayton/Cincinnati, OH Norma Doherty 937/433-0153 [email protected] Hilliard, OH David Williamson 614/921-8711 [email protected] New Philadelphia, OH Tracy Brady 330/343-4218 [email protected] Warren, OH Thurlow “Bill” Boyer 330/609-5696 [email protected] Ardmore, OK Ann Thompson White 580/223-6514 Eugene, OR Nick Richmond (co-leader) 541/689-3323 [email protected] Dr. Ron Wolfe (co-leader) 541/484-0309 [email protected] Pittsburg, PA Jane Oyler 412/672-5257 Houston, TX Betty Schwarz 281-347-2194 [email protected] Roanoke, VA Charles “Mike” Hopkins 540/721-2087 [email protected] Charlottesville, VA Rosemary Nothwanger 434/974-6638 [email protected] Copper Hill, VA H Preston Boggess 540/651-6777 [email protected] Chesapeake Beach, VA Linda Coty 410/535-3509 [email protected] Falls Church, VA Karen Schroeder 703/243-1969 [email protected] Lexington, VA Mary Barker 540/463-7269 [email protected] Lynchberg, VA Terry Houck (co-leader) 434/525-6086 [email protected] Norma Jean McGhee 434/525/4160 [email protected] Richmond, VA Diana Campbell 804/556-2345 [email protected] Seattle, WA Allie Fee 206/784-6978 [email protected] Morgantown, WV Jack Pavone 304/292-5259 [email protected] Lower Hutt, New Zealand Robyn Harris [email protected] published by the international essential tremor foundation 15 community education events ET specialists featured at Community Education Events The following physicians were featured speakers at IETF Community Education Events during the last quarter of 2007. Please see the IETF’s listing of physicians, with contact information, on the website at www.essentialtremor.org. Seattle, WA Monique L. Giroux, MD, is medical director of the Booth Gardner Parkinson’s Care Center in Kirkland, WA. Previously, she was medical director of Outpatient Movement Disorders at the Cleveland Clinic in Cleveland, OH and medical director for the National Parkinson Foundation Center of Excellence for Parkinson’s disease. (No photo available.) Peter Nora, MD is a neurosurgeon at the Seattle Neuroscience Institute at Swedish Medical Center, Seattle, WA. Peter Nora, MD Louisville, KY Pratap Chand, MD is a neurologist and chief resident at the Movement Disorders Program, University of Louisville Department of Neurology, Louisville, KY. (No photo available.) Todd Vitaz, MD is a neurosurgical Institute of Kentucky, Department of Neurological Surgery, University of Louisville School of Medicine. (No photo available.) Charlottesville, VA Fatta Nahab, MD is the primary investigator on the 1Octanol Studies at the National Institutes of Science (NIH), Bethesda, Maryland. The NIH is a part of the US Department of Health and Human Services and is the primary Federal agency for conducting and supporting medical research. (No photo available.) Loretta Wittevrongel, MA is a clinical research coordinator, NIH. (No photo available.) Madaline Harrison, MD is a neurologist in private practice in Fontaine Adult Neurology and is a professor of neurology at Madaline the University of Virginia Medical Center in Harrison, MD Charlottesville, VA. W. Jeffrey Elias, MD is a neurosurgeon and assistant professor at the University of Virginia, Department of Neurological Surgery, Charlottesville, VA. (No photo available.) Spokane, WA David Greeley, MD is a neurologist at Northwest Neurological, Spokane, WA. Jamie Mark, ARNP is a nurse practitioner at Northwest Neurological, Spokane, WA. (No photo available.) 16 Tremor talk SPRING/SUMMER 2008 David Greeley, MD Hackensack, NJ Anthony Marquinez, MD is a board certified adult neurologist with special interest in neuromuscular diseases. He is in private practice at the Hackensack Neurology Group. Hooman Azmi, MD is a neurosurgeon practicing in Hackensack, NJ. (No photo available.) Anthony Marquinex, MD Hershey, PA Jon Vickery, MD is a neurologist in private practice at the Vickery Neurodiagnostics Group, Carlisle, PA and is director of the Pennsylvania Neurological Associates Neurophysiology Lab. In addition, he is clinical associate professor of medicine at Hershey medical School, Penn State University, Hershey, PA. (No photo available.) James McInerney, MD is a neurosurgeon and assistant professor of neurosurgery at Penn State Hershey Medical Center, Hershey, PA. (No photo available.) Boston, MA Michael T. Hayes, MD is acting chair of the Department of Neurology, Caritas St. Elizabeth’s Medical Center, Boston, MA. Craig van Horne, MD is Chief of Neu- Michael T. Hayes, MD rological Surgery; St. Elizabeth’s Hospital; an instructor of Neurosurgery at Brigham and Women’s Hospital and The Children’s Hospital; co-director of Neurosurgical Movement Disorders Program, Brigham and Women’s Hospital and Massachusetts General Hospital, Boston, MA. (No photo available.) Las Vegas, NV Eric S. Farbman, MD is Medical Advisor for the Nevada Neuroscience Foundation as well as ALS of Nevada. He is also the Director of the National Parkinson Foundation Care Center located at Nevada Neurological Consultants, Ltd. Benjamin H. Venger, MD has a general neurosurgical practice in Las Vegas, with satellite clinics established outside the Southern Nevada area. He also serves as co-medical director of the Nevada Neurosciences Institute, Las Vegas, NV. Eric S. Farbman, MD Benjamin H. Venger, MD Not all ET information on the Internet is created equal EDITORIAL The Internet has become a huge part of our culture as, according to the Nielsen/NetRatings, approximately 75% of American households have Internet access. Trying to remember what life, and work, was like before we logged on is difficult. Besides the social networking, shopping and entertainment opportunities offered on-line, the Internet is also a wonderful repository of information. For the most part, that information is free to anyone with Internet access. But not all information on the Internet is equal. Some sites provide information based upon speculation, some is exaggerated or understated, some is just plain wrong. Without directly pointing fingers, we can say with certainty that information about ET is no exception. One example of misinformation that is so outlandish to almost be humorous was found on the Newport Beach and Costa Mesa, CA Daily Pilot newspaper website. In an article about pro-golfer Tim Simpson, and his deep brain stimulation (DBS) surgery for ET, the reporter wrote: “Last weekend marked the third anniversary of the operation he had to correct a neurological problem brought on by Lyme disease: benign essential tumors which caused tremors similar to those associated with Parkinson’s disease.” a little bird told us… The errors in this quote are many, and it is disconcerting to imagine someone taking this article into their physician with questions about their ET. First of all, Lyme disease does not cause ET. Neither do tumors, though some tumors can cause a tremor, but it is not associated with Parkinson’s disease. There is no such thing as benign essential tumors unless one is referring to tumors of an unknown origin that cause no problems. If the tremor — or tumors — was/ were benign, why was surgery required? Finally, ET is not associated with Parkinson’s disease. Rest assured, the IETF contacted this newspaper and provided the correct information. If you come across any such ludicrous information on the Internet, or anywhere, please inform the IETF. So where can you find the most current, reliable information about ET on the Internet? The National Institutes of Health website (www.nih.gov) provides accurate information on many health conditions including ET. Most major medical institutions have websites that also contain reliable information. Yet, all of these sites provide limited information. We suggest you consult the IETF’s extensive website (www.essentialtremor.org). It is the most reliable source of information on ET. We have access to information about the latest research, in part because we fund research on ET, but also because we have developed physician researcher contacts at many research facilities nationwide and internationally. For accurate and extensive information on ET, the IETF website is your best choice on the Internet. Dear IETF, Just want to thank whoever came up with the essential tremor awareness bracelets. Been giving them out to family and friends, and I’ve received a lot of support. I’ve had ET for a very long time and didn’t know what was causing it. A big thank you to you all! Emily Z., Florida Hello, I enjoy Tremor Talk immensely. It has helped me to understand and cope with ET. But, most of all, I now know that I am not alone with this affliction. Colleen C., Florida Send your comments and suggestions regarding Tremor Talk to Debbie Lovelace at [email protected]. published by the international essential tremor foundation 17 FOR SALE through the IETF These items are now available for sale through the IETF IETF offered exclusive right to market IBM Assistive Mouse Adapter! Essential Tremor: The Facts Regularly $184.00 NOW only through the IETF Oxford University Press Paperback, 224 pages By Mark Plumb and Peter Bain $154.95 Price includes shipping. Please allow 2 to 3 weeks for delivery. IBM’s Assistive Mouse Adapter enables people with ET of the hands to have completely normal use of the personal computer. It filters out the shaking movements of the hand in a similar way as the image stabilizing systems of some cameras. The device is designed to work with any operating system — requires no additional software — is simply plugged in — switches on and off — is adjustable based upon tremor severity. $15.95 Regularly $19.95 Price includes shipping and handling. At last! A book for people with essential tremor by a person who has essential tremor. I Can’t Stop Shaking: More than 10 Million People Suffer with Essential Tremor Essential Tremor Awareness Bracelets now available! Proceeds go to ET research. Purchase your attractive blue/green “Shaking Up Awareness About ET” bracelet now! (Available in increments of 5) 5 for $6.00 A comprehensive guide to understanding ET. Written by a geneticist and a leading movement disorders specialist with 50 years experience living with ET. Outlines the causes, treatments and methods of coping with day-to-day situations. By Sandy Kamen Wiseniewski Includes personal accounts of living with ET, and coping tips. $19.95 Order your copy today! Price includes shipping & handling. Price includes shipping and handling. ORDER FORM Item Description Quantity Price Each Sub Total IBM’s Assistive Mouse Adapter ____________ $154.95 $_____________ Essential Tremor: The Facts ____________ $15.95 $_____________ I Can’t Stop Shaking ____________ $19.95 $_____________ Essential Tremor Awareness Bracelets group(s) of 5 $6.00 (for 5) ____________ Mail this order form and your payment to: IETF PO Box 14005 Lenexa, KS 66285-4005 U.S.A. $_____________ (Residents of Canada add $5, International residents add $10 for shipping.) $_____________ TOTAL COST $_____________ Name ___________________________________________________________ Phone _____________________________________________ Address __________________________________________ City ____________________________________ State _______ ZIP _________ r Enclosed is my check (made out to the IETF) Please charge my r VISA r MasterCard r American Express r Discover Card # _________________________________________Exp Date ________ Signature ___________________________________________ 18 Tremor talk SPRING/SUMMER 2008 Investigational medications for ET by Kelly E. Lyons, PhD Director of Research at the Parkinsons Disease and Movement Disorder Center, University of Kansas Medical Center, Kansas City, KS and IETF vice president Medications prescribed for ET provide adequate treatment for only a percentage of people. Several new medications are being tested for effectiveness and safety in the treatment of ET. These medications include 1-octanol, sodium oxybate, T2000 and carisbamate. been used for alcohol withdrawal symptoms and to help maintain abstinence. Given sodium oxybate’s potential to treat alcohol withdrawal symptoms while discouraging further ingestion, a pilot study of five patients with various movement disorders was conducted. Two ET patients were included. So1-Octanol dium oxybate was given twice daily. A tremor reduction of Alcohol was found to have a beneficial effect on tremor 79% and 48% was observed in the two ET patients while in a majority of ET patients during the late 1940s. taking 1.5 g. of sodium oxybate. Mild headache Limitations for its use as an on-going treatment and dizziness were reported by one subject and of tremor are apparent. higher doses led to sedation. • Reduction of tremor is generally limited to In a study of nine ET patients taking varying less than one hour after a drink. dosages, the anti-tremor effects of sodium oxy• Consumption of larger amounts of alcobate were found to be most effective at 1.5g hol may eventually be needed to suppress three times a day. An action tremor improvement tremor. of 43% and a postural tremor improvement of • Ingestion of larger amounts of alcohol may 54% were reported. The lowest dose maintained result in a more severe tremor, called refor ET subjects was 0.5g three times daily and Kelly E. Lyons, PhD bound tremor, after the effects of the alcothe highest was 2.5g three times daily. hol have passed. For most subjects, the effect of the medication was ob• Alcoholism may result. served 40 to 60 minutes after ingestion and was main1-Octanol, another type of alcohol, has been shown in tained from four to five hours. Side-effects reported inresearch studies to provide tremor reduction while avoidcluded dizziness, headache, emotionality, nausea, sedation ing intoxication. It is currently approved by the United and lack of coordination. States Food and Drug Administration (FDA) as a food adPreliminary findings suggest that sodium oxybate may ditive and occurs naturally in citrus oils. be an effective treatment for ET. However, further research In a double-blind, placebo-controlled study of 12 ET is necessary and the potential for abuse addressed. Larger, patients, the effects of a single dose of 1 mg/kg of 1-ocdouble-blind, placebo-controlled trials of sodium oxybate tanol caused significant reduction in tremor amplitude are planned. compared to placebo for up to 120 minutes, and with no intoxication. Headache was a side-effect. In a second study, 21 ET patients were given varying single dosages of 1-Octanol ranging from 1 mg/kg to 64 mg/kg. Two hours after ingestion, maximum improvement in drawing spirals, handwriting and tremor occurred at all dosage levels, but the higher dosage had a more lasting effect. No outward signs of intoxication were present. Side-effects included mild, transient weakness; headache; unpleasant taste; dry mouth; and urinary tract infection. Studies examining multiple daily doses of 1-octanol and different formulations of the drug are currently ongoing at the National Institutes of Health (NIH) (www.clinicaltrials.gov). Sodium Oxybate Sodium oxybate is a central nervous system depressant, and is currently approved by the FDA for excessive daytime sleepiness. Sodium oxybate has a high potential for abuse so in the United States a registry monitors the distribution and use of the drug. In other countries it has T2000 T2000, a barbiturate, has been investigated as a treatment for ET in two studies. In the first study of 12 ET subjects, T2000 led to a significant reduction in tremor. One subject withdrew because of rash and respiratory infection, but no other side-effects were reported. Similarly in a second study of 22 people, T2000 was found to significantly reduce tremor. However, there was also a significant placebo response. Again, one T2000 subject developed a rash. Preliminary results suggest that there may be some benefit of T2000 for ET. Further research is ongoing (www. clinicaltrials.gov). Carisbamate Carisbamate is a new anticonvulsant being investigated as a treatment for ET (www.clinicaltrials.gov). How the drug works is not clear, but results from safety studies in seizure patients have shown that carisbamate is safe and well tolerated. published by the international essential tremor foundation 19 membership donations IETF Membership Donations It’s easy to join the IETF or renew your membership! Just check the level, and tell us which essay packet(s) you would like to receive. Remember, your membership fees are tax-deductible to the extent allowed by law. For your convenience, you can also join online at: www.essentialtremor.org ❒ $30 Basic Membership: • Personal notification of ET community education events in your area; • An essential tremor (ET) medical alert card; • Professional representation with media, government & • The IETF member newsletter; corporate entities; • Discounted rates on purchases; • Information on the latest research into finding a treatment and a • The personal satisfaction of being part of a community that shares your concern for finding better treatments and a cure for ET. cure for ET, and the opportunity to participate in research projects; ❒ $50 Bronze Membership: The Bronze, Silver and Gold Memberships include publications. Check which packets you would like to receive with your membership. (Bronze and Silver select one packet. Gold select two packets) ___ Packet 1 (Diagnosis, History & Genetic Factors) Basic package plus one packet of publications. ❒ $100 Silver Membership: Basic package, Annual Report, plus one packet of publications. ❒ $250 Gold Membership: Basic package, Annual Report, Online Membership and two (2) packets of publications. ___ Packet 2 (Diet, Alternative Therapies, Exercise & Medications) ___ Packet 3 (Other Tremor Disorders) ❒ $500 Platinum Membership: Basic package, Annual Report, Online Membership, and full set of publications. ❒ $1000 Presidents Club Membership: Membership in the Presidents Club gives you the Basic Membership package, Annual Report, Online Membership, full set of publications and DVDs, recognition in newsletter. Enhancements ❒ Check to become an online member! For just an annual, tax-deductible fee of $15, you can also become an online member with access to: a live chat with an essential tremor medical specialist three times a year, a live chat room, discussion boards, past Tremor Talk issues in digital form, up-to-the-minute information on educational events, research, medications, and much more. Check to add a family member or friend at one-half of the normal donation! For $15 you can ensure that the people you care about with essential tremor can also receive all the benefits of membership, while you claim the $15 tax deduction. Please provide the following information on each person: ❒ Name of family member or friend ______________________________________________________________________________ Their address _________________________________________________________________________________________________ Relation to you _________________________ Phone __________________________ Email _____________________________ Please fill out the short application below, and mail it, with your chosen membership level fee to: IETF, PO Box 14005, Lenexa, KS 66285-4005. Name ___________________________________________________________________________________________________ Your Address ________________________________________ City ________________________________ State _______ Zip _____________ Phone ___________________________________________________ Email _______________________________________________________ ❒ My check is enclosed (payable to the IETF) ❒ M/C Charge my: Account holder’s name _______________________________________ Exp. Date _____________________ 20 Tremor talk SPRING/SUMMER 2008 ❒ Discover ❒ American Express Account No. _____________________________________________ Signature ___________________________________________________________________ Sub Totals: Membership Donation Amount Additional Donation International Postage ❒ VISA $ ___________ $ ___________ $ ___________ (Residents in Canada add $5, International add $10) Total: $ _____________________ Treatment update: ® Botox Reduce negative effects of Botox® by choosing experienced physicians William Ondo, MD Neurology Associate and Assistant Professor of Neurology, Parkinson’s Disease Center and Movement Disorders Clinic, Baylor College of Medicine, Houston, TX Botulinum toxin (Botox®) injections have been used for more than 15 years to treat ET. These treatments are done “off label”, meaning that the use of Botox® injections for ET has never been officially recognized by the Food and Drug Administration (FDA). Multiple studies have shown mixed results for effectiveness against arm tremor, and mostly positive results for the treatment of head tremor. Recently, reports of deaths associated with Botox® injections have been publicized. These usually occurred in children with cerebral palsy who developed weakness of swallowing muscles after injections. This can result in pneumonia and death. Weakness of swallowing muscles is a well know possible side effect of botulinum toxins. It usually occurs with injection near the front of the neck and/or in people with pre-existing muscle weakness, such as cerebral palsy. The risk of similar problems with arm injections is very small. The risk for neck injections is potentially greater but still very small when injections are done by an experienced practitioner. As always the benefits of treatment must be weighed against potential risks. The medical community has not changed its recommendation regarding this treatment based on the recent reports. The best way to reduce potential side effects is to employ physicians experienced with botulinum toxin specifically for tremor or dystonia. Good to know Seeking volunteers for Detroit-area drug trial Quest Research Institute is enrolling people with moderate to severe ET for a research study at its Detroit area site. The two-week study will assess an investigational drug for ET. If you’re interested, please call 888-Quest-24 (888-783-7824) or visit www.questri.com. Brain tissue donations vital to finding ET cure The gift of brain tissue is the gift of hope, advancing medical knowledge of ET and bringing us closer to finding a cure. Direct analysis of the shape, number, and content of nerve cells in brain tissue helps researchers better understand ET. If you want to donate brain tissue or want additional information about the program, contact the ET Brain Repository at Columbia University at 212-305-8513. You can also send an email to [email protected]. New movement disorder program for Pasadena, CA The Huntington Movement Disorders Program, Jerome Lisk, MD director, has opened its doors in Pasadena, CA. For more information, check out its website at www.huntingtonmovmentdisorders.com. Attention Snow Birds! We receive a great number of address change requests, and many of these are seasonal changes. If this is your situation, please call us toll-free at 888-387-3667 to give us the approximate dates of your moves so we can set up the database to switch back and forth to the appropriate address for time of year. Amazon.com purchases When you make Amazon.com purchases, be sure to enter that website through the portal on the IETF website (www.essentialtremor.org). Click on the Amazon banner at the bottom of the page. A portion of the cost of your purchase will be donated to the IETF. published by the international essential tremor foundation 21 If it quacks…it’s probably a duck But, if a hand shakes...it’s probably NOT Parkinson’s disease. Research funding is dependent upon public awareness. However, sometimes the general public, many medical professionals, the media and those people who grant money for research are unaware of essential tremor (ET). The future of ET research depends upon their awareness. Make your donation count! Contributions will be used to help increase national awareness of ET. For more information about ET or to make a donation, logon to www.essentialtremor.org. Hope through research, awareness and support
