FROM THE ANNUAL REPORT By Charlotte Shupert, Ph.D. President of the VEDA Board Another year has come and gone, and I am once again pleased to report that it has been another year of growth and accomplishment for VEDA. During the past year, VEDA has been listed in more than 100 publications as a resource for people with vestibular disorders. These publications, ranging from the local dailies of small towns across the United States to the New York Times and American Health magazine, have enabled us to reach thousands of people who were not previously aware of VEDA. As a result, we mailed information to 15,000 more people, and our membership has increased from 2,600 to 4,200, up 62 percent. [See graph on page 9.] This astonishing growth would never have been possible without the dedicated service of the people who have worked and continue to work for VEDA. On behalf of the organization and the board of directors I would like to express heartfelt thanks for years of service to Susan Engel, Joanne Huston, and Mary Ann Watson, who are retiring this year. These board members have been with VEDA from the beginning. . . . Increasing membership numbers are one measure of growth, but there are many others. VEDA acquired both an 800 number and a TTY this year to enable more people to reach us and to better serve the hearing-impaired. VEDA moved to new office space to accommodate our increased work load and improve the working conditions for our staff. Some of our computer equipment collapsed under the load and was replaced by newer, faster equipment. We added a new document, "Benign Paroxysmal Positional Vertigo," by Timothy Hain, M.D., and added audio tapes of Balancing Act and Stories and Strategies. We revised our articles of incorporation to limit the liability of board members, and added fire and theft insurance for our offices and equipment. It has been a busy and rewarding year. The intensity of the work load has been more than outweighed by the satisfaction of knowing that we have reached thousands of new people with the information they need to understand and deal with their disorders. I look forward to the coming year and to the challenges it will bring, knowing that VEDA will continue to grow and improve in its ability to serve people with vestibular disorders. Even Keel, the newsletter of the Houston, Tex., support group doesn't take things too seriously. Although it includes information about meeting schedules, phone lists, and calls for articles, its motto is "If what we print fits, that's news." Under the heading, "Mermaids and Other Questionable Phenomena," the editors promise to print "any suggestions that members have found useful in coping with vestibular symptoms, however unorthodox, unseemly, incredible, or downright unbelievable." The first edition reported "no casualties" at the May meeting, the group's maiden voyage. Nutrition experts spoke to the Middle Tennessee (Nashville) support group in May. An audiologist was scheduled was scheduled for July to discuss "Vestibular Anatomy and Physiology; Diagnostic Testing." The group's newsletter featured an article, "Unsung Heroes, Our Partners," as well as a summary of the nutrition experts' talk. The June 1994 edition of The Evergreen News, an acoustic neuroma support group in Eatonville, Wash., lists the following things named by members as good to be found in the bad experience of acoustic neuromas: closeness to others, kindness to the less fortunate, gratitude for little things, closeness to God, new relationships, more patience, new meaning to life. A cartoon in the newsletter of the St. Louis Meniere's group consists of drawings of clinics for hearing, vision, headache, and vertigo. The vertigo clinic is upside down. In addition, the group leader, Diane Riesenmy reported that her study of the anxiety levels of 14 people with Meniere's disease and the people who take care of them when they are sick indicated that the caretakers were mildly anxious and the patients moderately anxious when the patients were symptomatic. "This means that while caring for a Meniere's patient may be difficult, Meniere's patients exhibit an even greater level of anxiety," she said. Most doctors continue to use medication as a first approach rather than a last approach to treatment of vestibular disorders, according to a physical therapist who spoke to 21 members of the Philadelphia, Pa., support group in June on vestibular rehabilitation. The preference for medication may be related to "low awareness" on the part of physicians of the need for vestibular rehabilitation as well as "the difficulty of finding individuals interested and skilled in supervising these [vestibular rehabilitation] programs," she said. Lola Ligaya B. Suzuki, R.N., leader of the newly formed Hawaii Balance and Dizziness Disorders Group, in Honolulu, "would like to share the legal implications of persons who may have, as I do, BPPV and endolymph hydrops, or other vestibular disorders in general. . . ." Ms. Suzuki has experience as an attorney as well as a nurse. She can be reached at 1589 Ala Lani St., Honolulu, HI 96819-1444. Nearly 150 members and friends of the Tinnitus Support Group of Lancaster County (Lancaster, Pa.) attended a presentation on tinnitus by Dr. Stefan P. Kruszewski in May. The Marlbourough, Conn., group recently held its first meeting and made plans to exchange support and information and to invite a psychologist and a physical therapist to speak. The summer newsletter of the Meniere's group of Sacramento, Cal., featured a summary of a talk by a pharmacist on drug therapy for Meniere's. Another article explained "How to Survive in a Restaurant." On the lighter side, the newsletter described middle age as "that difficult period between adolescence and retirement when you have to take care of yourself." Meetings of the Meniere's group of Royal Oak, Mich., this spring included talks by health professionals on "Natural Ways to Improve Your Health," "Non- Surgical Treatment of Vertigo," and "Bio-Feedback and Relaxation Techniques." The group also held its first "open meeting" since 1989, during which each member spoke for two minutes or so. RECENT TECHNICAL ARTICLES [Dr. Susan Engel is on sabbatical from her "News and Reviews" column. This column, a substitute, is based on abstracts of articles in medical and scientific journals found in the National Library of Medicine.] SURGERY FOR NON- MENIERE'S VERTIGO J.E. Benecke discussed surgery he performed on 14 patients suffering from vertigo resulting from chronic vestibular neuronitis, delayed onset vertigo after sensorineural hearing loss, or labyrinthine injury after temporal bone fracture. He reported either total relief of symptoms or marked improvement in all 14 at the time of a one-year follow-up exam. However, he said, surgeons must exercise extreme caution in selecting non-Meniere's patients for surgery and that good results depend on proper selection, accurate diagnosis, and the exclusion of central disease. See Benecke, J.E., "Surgery for non- Meniere's Vertigo," Acta Otolaryngol Suppl (Stockh) 1994; 513:37-9. BRANDT-DAROFF EXERCISES Those familiar with the Brandt-Daroff exercises for BPPV may want to check out "Therapy for Benign Paroxysmal Positioning Vertigo, Revisited" by Brandt, T.; Steddin, S., and Daroff, R.B. It was published in the May 1994 issue of Neurology; 44(5): 796-800. ANTI-VERTIGO DRUGS H. Timmerman, in Acta Otolaryngol Suppl (Stockh) 1994; 513: 28-32, discussed drugs used to treat vertigo as well as possibilities for new therapeutic agents. See "Pharamoco- therapy of Vertigo: Any News to Be Expected?" BIBLIOGRAPHY The Journal of Vestibular Research included a vestibular bibliography in its Spring 1994 issue; 4(1): I-IV. VESTIBULAR REHABILITATION The abstract of an article by A.M. Eber said the use of physical therapy in the treatment of vertigo was based on the plasticity and adaptive qualities of the vestibular apparatus. Whether physical therapy is used as a treatment and what kind is used depend on the location of the lesions. These treatments give lasting effects and avoid prolonged treatment with anti-vertigo drugs which, by impairing the development of compensation, often lead to persisting functional disorders, the abstract said. The full text of this article is in French (Rev Prat, 1994 Feb. 1; 44(3): 367-71. VERTIGO In Current Opinions in Neurology, 1994 Feb; 7(1): 88-92, M. Collard and Y. Chevalier reviewed the occurrence, diagnosis, and treatment of vertigo, "one of the most frequent reasons for consultation in daily medical practice. Recent studies show that vertigo involves considerable social costs before being managed efficiently, as it is often incorrectly diagnosed," the abstract said. MORE VESTIBULAR REHABILITATION A Japanese team recently compared the efficacy of vestibular training (VT) with that of anti-vertigo drugs for BPPV. They found that "improvement rates of positional nystagmus and vertigo were higher in the two groups treated by VT with and without medication than the improvement rate in the medication- alone group. In the groups treated by VT, the effects were not influenced by time since onset of disease or by patient age. It is therefore assumed that VT can be used as a first-choice treatment in patients with benign paroxysmal positional vertigo, even in long-term cases or older patients." See Fujino, A.; Tokumasu, K.; Yosio, S., et al., "Vestibular Training for Benign Paroxysmal Positional Vertigo, Its Efficacy in Comparison with Anti- Vertigo Drugs," Arch Otolaryngol Head Neck Surg, 1994 May; 120(5): 497-504. VESTIBULAR NEURITIS Vestibular neuronitis is an acute disorder of the vestibular apparatus which manifests by sudden vertigo, without apparent cause, and without auditory or neurological symptoms, said C. Conraux in a recent article (Rev Prat 1994 Feb 1; 44(3): 324-7). The prognosis is favorable "although disorders of moderate intensity may rather often persist, in the form of positional vertigo, sometimes paroxysmal, or disorders of equilibrium on abrupt movement." The complete article, which discusses origins, diagnoses, and treatments, is in French. LETTERS T'AI CHI As a new member of VEDA, I would like to share my experience with using T'ai Chi Chuan to help alleviate the chronic vertigo, fatigue, disequilibrium and unsteadiness continually present since December 1990, when I was diagnosed with post- viral labyrinthitis. In 1988 I fulfilled a cherished dream of learning T'ai Chi. Though initially I had very little confidence I could learn it, I proved to be a talented and diligent student to the point where I was teaching classes myself by September 1990. On Dec. 2, 1990, I was suddenly rendered helpless and hospitalized with a virus in the inner ear. I felt my T'ai Chi world of teaching, learning, and practicing with others had slipped away forever. A couple of months later, when I was able to move around slowly, my love of T'ai Chi won out, and I determined I would not give it up. I began practicing at home as well and as often as I was able. I soon noticed that my fumbling practice was improving my balance and coordination. The slow movements did not increase my dizziness. Ability to maintain balance is dependent on information received by the brain from (1) the eyes, (2) the inner ears, and (3) muscles and joints of the feet, legs, trunk, and spine. T'ai Chi is well-suited to stimulating the sending of this information in category (3). Not a physically demanding form of exercise, it helps improve memory, posture, coordination, and concentration. Called "meditation in motion," it teaches you to relax. When the movements are synchronized with deep breathing, the internal energy called "chi" is released, bringing balance to body, mind, and spirit. Practicing T'ai Chi has never made my symptoms worse. On the contrary, often my balance improves as I practice. T'ai Chi is a discipline that requires patience, perseverance, hard work, practice, persistence, and determination to learn. T'ai Chi taught me all of these. Applying them to learning to cope with my disabilities this past 3 1/2 years has helped me immeasurably. I would recommend T'ai Chi to anyone whose vestibular disorder and general physical condition indicates to your doctor that it is appropriate. . . . Edith Gregory - age 67 4043 Stevens Drive Prince George, B.C., V2K 1E2 Canada HEAD MANIPULATION I first came in contact with VEDA after we discovered that my then 4-year-old son was hearing-impaired in one ear. The information and resources your organization provided were very helpful to us. More recently, I started having recurring attacks of vertigo and fullness on the left side of my face. After seeing numerous doctors, including ear, nose, and throat specialists, neurologists, and others, and after undergoing an MRI, ENG testing, and similar procedures, I was finally diagnosed . . . as having BPPV. . . . After suffering months of intermittent dizziness and discomfort, a simple non- invasive, two-minute head manipulation immediately brought complete relief to both the dizziness and the feeling of fullness. Further, whenever I feel the beginning of an attack, I perform a series of simple exercises at home which were taught to me by [my doctor]. So far, I have been free of a vertigo attack for over two months and feel like I may finally have control over my life again. . . Debby Zurzolo 1016 Point View Street Los Angeles, CA 90035 VEDA TIDBITS ELECTIONS The VEDA board became more geographically distributed than ever as a result of elections this spring. VEDA members elected five new board members to two-year terms starting June 8. The five are Dennis I. Bojrab M.D., professor of otolaryngology at the University of Michigan and Wayne State University; Mary Koch, a clinical social worker from Sonoma, California; Michele I. Royston, L.P.N., program coordinator of a balance disorders center in Virginia Beach, Va.; Steven Soden, a writer from Santa Barbara, Calif., and Susan Zalewa Tupper, R.N., personnel coordinator for nurse recruitment at Hartford Hospital in East Hartford, Conn. Current board members re-elected for another two-year term were Cari Bennett, Dotti Gray, and Charlotte Shupert. Other current board members have terms ending in 1995. Eight of 18 board members now live in states other than Oregon. Voters also approved changes in VEDA's articles of incorporation intended to reduce the elected board's legal liability. NOTE FROM THE VEDA BOARD If you found something in this newsletter especially helpful, please share it with a friend. Send the friend's address to us, and we'll be glad to send your friend a copy. NEW BOARD OFFICERS VEDA board members recently elected new officers for 1994-95 as follows: President, Charlotte Shupert; vice president Carrie Vogt; secretary Cari Bennett; treasurer Ted Norton. The board will have three subcommittees this year: board development, led by Carrie Vogt; education, led by Charlotte Shupert, and outreach, led by Mike Smith. OLD NEWSLETTERS If you don't keep your old VEDA newsletters, please recycle them by placing them in libraries, churches, or other places where others might find them useful. NEWS BRIEFS MERELY AN EARTHQUAKE Unexplained dizziness threw Maggie for a loop recently during an episode of Northern Exposure, a popular television soap opera set in small-town Alaska. Maggie, a light-plane pilot and a regular on the show, experienced a sudden vertigo attack while flying with Joel, the town doctor. Via the Internet, Joel searched a medical data base at Johns Hopkins and diagnosed Maggie's problem as labyrinthitis. The show ended with an earthquake, which Maggie interpreted as an inner ear attack. When Joel told her the truth, Maggie laughed and said, "Oh, it's only an earthquake." DIZZINESS SEMINAR Neil T. Shepard, Ph.D.; David S. Zee, M.D., and Joel A. Goebel, M.D., will be guests of honor at the sixth annual Interdisciplinary Seminar on Diagnostic and Rehabilitative Aspects of Dizziness and Balance Disorders, scheduled Dec. 7 through 11 in Denver. Dr. Shepard, one of VEDA's medical and scientific advisors, is director of the balance disorders lab at the University of Michigan Medical Center, in Ann Arbor. Dr. Zee, also one of VEDA's medical and scientific advisors, is director of the ocular motor vestibular testing laboratory at the Johns Hopkins University Medical School, in Baltimore. Dr. Goebel is director of the vestibular lab at Washington University School of Medicine, in St. Louis. Meant for health professionals, the seminar has been organized by the Prosper Meniere Society. More information about the seminar may be had from the meeting coordinators, Apryl Salz or Jane Wells, c/o I. Kaufman Arenberg, M.D., 300 E. Hampden #401, Englewood, CO 80110; phone (303) 788-4235 or (303) 781-7223; FAX (303) 788-4234. GUIDE BOOK FOR LAWYERS The National Head Injury Foundation (NHIF) has published a 600-page book edited by Charles N. Simkins, Analysis, Understanding and Presentation of Cases Involving Traumatic Brain Injury, which might be of help to VEDA members or their lawyers. The book includes many articles such as "Mechanism of Traumatic Brain Injury Resulting from Rear End Car Crashes" and "Special Considerations in Identifying and Litigating the 'Mild' Head Injury Case." Mr. Simkins, a Michigan attorney active in educating other attorneys about traumatic brain injury, is a member of VEDA. The book, which costs about $200, is available from NHIF, 1776 Massachusetts Ave. NW, Suite 100, Dept. LB, Washington, DC 20036; phone (202) 296-6443. NEW DOCUMENT VEDA has added a new document, "R-5: Benign Paroxysmal Positional Vertigo," by Timothy C. Hain, M.D. to its collection. Much of the illustrated six- page document explains various treatments for BPPV, including the liberatory maneuver, the Brandt-Daroff exercises, and other options. R-5 is available to members for 50 cents to partly offset the cost of printing, postage, and handling. THANK YOU We thank all of the following for their contributions to VEDA through July 5: Associates ($100 to $499): Jane Macpherson, Oregon; Charles L. McCain, Florida; F. Owen Black M.D., Oregon; Micromedical Technologies, Illinois; Linda Holdstock, Massachusetts; Sidney N. Busis M.D., Pennsylvania; Leath Cahoon, Utah; Jeanne Huston, California; Cindy Goral, California; Lester Pearson, Michigan. Contributors ($10 to $99): ALABAMA: Judith Rodgers. ARIZONA: Sully Hightower, Dr. A.L. Mansure, Norma Raya, Linda Goeglein. ARKANSAS: Barbara Lienhart, Oscar Yaeger. CALIFORNIA: Lois McCarty, Lillian Sorensen, Glenn Taylor, Arturita Tolentino, Freda Baptista, Eugenia Culbertson, Lee Law, Tony Passalaqua, Rosalind Cunningham, Stephen Turrini, Claire Saffian, Eleanor Rubard, Dolores Frye, Reta Tyree, Mignon Naylor, Leo Alvarez, R. Ted Meyer, Patricia Milward, Jean Houchens, Jean McClure, Whitney Crum, Joan Kraus, Rose Lutes, Julie Takeda, Vee Robinson, Margie Baxter. COLORADO: Lois Jensen, Don McDermott, Alan Uffman, Kim Saltus Johnston D.V.M., Charles Maxfield, George Knox, W.E. Brown, Janice Gilland. CONNECTICUT: Dr. Gerald Labriola, Ronnie Nielsen, Yasmine Cronin, Jill Durall, Ann Hagelstein, Nancy Watters, Donna Reid. DELAWARE: Marian King. FLORIDA: Andrew Hirshik, Lillian Archer, Patricia Kennedy, Rita Shaffer, Patti Thompson, Geraldine Dodge, Edwin Martin, Kathryn Karpowicz, Dorothy Parr, Perry Behrens, Carol Goldman. GEORGIA: Reba Smithline, Mim Pfledderer, Gilbert Taylor, Angela Cerrito, Ellen Dennis. HAWAII: Lola Ligaya B. Suzuki RN, Roy Shimizu, Jill Boettner. ILLINOIS: Ted Graham, Laurie Medina, Nels Kans, Mary Allen, Donna Novack, Elaine Lipinsky, Teresa Campana, Lou Tomes, Betty Meyers, Donald Fawcett, Maura Supancic, Jill Niksich. INDIANA: Shirley Redifer, Cecilia Weber, Robbin Myers, Wendy Wierzbowski. IOWA: Mary Inman, Lyle Van Zele. KANSAS: Betty Gearhart, Sandra Vaughn, John Peterson. LOUISIANA: Annemarie Maher, Janet Jacobsen, Phyllis Chatman, Gina Bush. MAINE: Cornelia Yaw, Dennis Robillard, Laurene Beckwith. MARYLAND: Nancy Cannon, Russell Meussner, Ermene Lilly, Brenda Hall, Chata Raye Smith, Earl Marsh, Mary De Angelo. MASSACHUSETTS: Charlyn Heidenreich, Jennifer Carpenter, Michelle Lyons, Eunice Good, Barbara Pasquale, Candace Clark, Kathy Richburg, Eleanor Stichweh, Gillian Lieberman, Walter Kovaleski, Shirley Burton, Susan Bayard, Paul Pitman, Rose Mandill, C.N. Broghamer, Mary-Ann Coyne, Michael Impastato, Mary Pratt, Sandra Pappas, Joni Seager, Betty Commerford, Betty Latner, Natalie Tompkins, Jennifer Porter, Paul Pitman, M. Fatima Martins. MICHIGAN: Steven Eisenberg, Richard Cook, Cheryl Krysiak, Doreen Wise-Friedenberg, Kathy Handyside, Verna Chambers, Mary Pawlak, Carol Wagenmaker. MINNESOTA: Angela Kaiser. MISSOURI: Michael Steele. MONTANA: John Parker. NEW HAMPSHIRE: Henry Ehrmann. NEW JERSEY: Mary Gleason, Ruth Palace, Cathy Mele, James Meenan, Dawn Taormina, Gladys Rude, Robert Robertson M.D., Marvin Greenberg, Barbara Strongin, Ann Kohoot, Harry Bott, Diannea McClelland, Elizabeth Goebel, Brian Packard, Charles Rauschert. NEW MEXICO: Wendy Babcock. NEW YORK: John Reed, Francine Hayward, Dr. Rose Benderly, Phyllis Lindsey, Edwin Haines, Daniel Silverstein, Blanche Byrd, Sheila Bernard, Sara Morse, Jane Schlick, David Bernstein, Doranne Hans, Saverio DeFrancisci, Mary Hines MSPT, Daniel Riccio, Barton Sholod, Bohdan Wenglowskyj, Jean Vincent, Lorna Hoffman, Wendy Hollowell, Theodore Papamarcos, Elsie Hynna, George Mahoney, Roxanne Slow, Ben Orland, Roscha Folger, Libby Nelson, Nancy Ladd, Hedi Levenback, Fanny Acuna, Phyllis Sherman. NORTH CAROLINA: Margy Lee Elspass, Betty Conway, Sally McMillan, Alice Dyke, Linda Marker, Edith Tallent, Ingeborg Bush. OHIO: Lisa Billings, Elaine Thomas, Gail & Dan Hamilton, Dorothy Rice, Timothy Miller, Joanne Sprowls, Toni Gendler, Thomas Hogle. OKLAHOMA: Patrick Alexander. OREGON: Charlotte & Ray Johnson, Norma Raya, Ida Barbeau, Mary Ann Watson, Anna Maye Brown, Christine Edwards, Mary Lee Harris. PENNSYLVANIA: Muriel Jackson, Joan Cavanauga, Marie Sefter, John Salyer, Doris Africa, Gwen Dittmar, RR Pottash MD, Deborah Simon, Susan Taylor, Grace Najarian, Harry Gerhart, Robert Hays. PUERTO RICO: Daphne Hernandez, Benito Martinez, Robert Saylor, Patria Echevarria, Antonio Montalvo Hernandez. RHODE ISLAND: H. Reed, Barbara Bicknell, Geralyn Dougherty, Jeanne White. SOUTH CAROLINA: Simone Fontaine, Shirley Zahrn, Sawyer Cooler. SOUTH DAKOTA: Dolores Shanks. TENNESSEE: Mary Ann Neumann, Betty Ann Keil, Judy Balton. TEXAS: Melissa Lane, Gail Sachson, Janis Hogan, Helen Gray, Anna Sellmyer, Mr. & Mrs. Earl Landis, Gail Sachson, Carter Beghtol. VIRGINIA: Paul Ferraro, Jean McNair, Richard Queisser, Margaret Paul, Linda Allen, Anthony Denice, Robert Hay, Donna Mayer, Pam Kiser, Patricia Wexelblat, Rebecca Stone. WASHINGTON: Judy Barnes, Norita Nelson, Pam Roy, Helen Bruchak, Annemarie Warren, Judi Enright, Marjorie Moeller, Linda Paros, Gisela Shoda, Lois Haddon. WISCONSIN: Alma Ellefson, Russell Oldenburg, June Margenau, Martha Recknagel, Sandra Carlson, Mary Angermeyer, Claudia Rotroff, Patricia Twohig. AUSTRALIA: Sheila Sanders. CANADA: Donald Giles, John Urquhart, Donna Davis, Susan McNally, Phyllis Purdy, D.J. Ireland, M.D.; Judy Kelly-Nobel, Eileen Baron, Dora Lawrence. NEWS BRIEFS TINNITUS RESEARCH Singer Barbara Streisand has donated $25,000 to the American Tinnitus Association (ATA). A news release said Ms. Streisand, who has tinnitus, a constant ringing or other noise in the ears or head, made the contribution in response to ATA's appeal for research funding in connection with its $5 million research endowment campaign. "I hear noises all the time," she said. "It's pretty horrible. I long for the silence." According to the ATA, nearly 20 percent of the American population experiences tinnitus, with 10 to 20 million Americans having tinnitus in chronic form. Ms. Striesand's gift is one of several large contributions to start the ATA campaign. DEAFNESS RESEARCH Proceeds from a recent dinner honoring Louise Fletcher, the actress, and Dr. Oliver Sacks, the neurologist and author, will benefit The Deafness Research Foundation (DRF). Ms. Fletcher, whose parents were both deaf, received a surprise award honoring her involvement as a DRF board member and her support of the deaf community, a news release said. Dr. Sacks was honored for his book, Seeing Voices: A Journey into the World of the Deaf, which explores deafness and "the amazing beauty of sign language." Since 1958, the DRF has been devoted to providing seed funding for research into deafness and other serious ear disorders.