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May 2009 www.hearingloss-nyc.org E-mail: HLAANYC@aol.com
Hearing Loss Association of America exists to open the world of communication to people with hearing loss through information, education, advocacy, and support. Tuesday, May 19, 2009 5:30 – 7:30 PM (Socializing at 5:30; program begins at 6:00.) Assistive Listening Devices SPEAKER: Josh Gendel MEETING LEADER: Joe Gordon Location MUHLENBERG LIBRARY BRANCH 209 West 23rd St. (between 7th and 8th Ave., closer to 7th) 3rd floor—elevator available
*Taxi looping project after the meeting! See page 7. *The A/C will be turned on in the building starting May 15. This is a heads up to bring a sweater!
Editor’s Corner – Elizabeth Stump
Welcome to the May 2009 issue of the HLAA‐Manhattan News & Views! Did you know that May is Better Hearing and Speech Month? Take the opportunity to encourage those around you who have a possible hearing loss to get a hearing screening. (Does the person have trouble hearing what someone else is saying in another room, or trouble communicating in a social setting? Do they have any ringing in their ears?) Free screenings are available at the Center for Hearing and Communication (formerly the League for the Hard of Hearing) on Tuesdays, 12‐2 PM, and Thursdays, 4‐6 PM, at 50 Broadway, 6th Floor. E‐mail firstname.lastname@example.org or call (917) 305‐7766 to reserve a screening. You can also find an audiologist near you by contacting The American Speech‐Language‐Hearing Association (www.asha.org or (800) 638‐8255). For hearing loss facts and worksheets for kids, visit the Better Hearing and Speech Month section of the American Academy of Audiology’s Web site here: www.audiology.org/resources/consumer/BHM/Page s/default.aspx#wallpaper. This month’s Chapter meeting will be our annual presentation on Assistive Listening Devices. Josh Gendel, the Director of the Assistive Technology Center at the Center for Hearing and Communication, will speak about hearing assistive technology. Questions and answers will follow. (The building’s A/C will be turned on starting May 15, so you may want to bring a sweater.) Once again N&V is featuring an “Ask the Expert!” column, courtesy of NYU Associate Clinical Professor of Otolaryngology Dr. Paul E.
NOTE: Assistive listening help is provided at our meetings through live CART captioning and a room loop for those whose hearing aids have a T‐coil. Headsets are also available.
Go Green! Would you like to receive N&V by e‐mail only rather than receive a mailed version to help us cut down on paper consumption and save money? Please notify HLAANYC@aol.com to make this change. Thanks!
Next Month: Tues., June 2, 5:30 PM This Will Not Be A Regular Meeting—High School Student Scholarships Reception Instead! Come support the Chapter and the student winners!
2 Hammerschlag. Turn to page 4 for the scoop on hearing aids for people with acoustic neuromas. Thanks to members who submitted questions, and keep them coming! See you at the chapter meeting on May 19th!
CHAPTER PLANNING COMMITTEE Join us on the first Tuesday of each month to help plan programs & events. HLAA Manhattan Chapter Phone Number: (voice) (212) 769‐HEAR (4327) Barbara Bryan email@example.com Barbara Dagen, Newsletter Committee firstname.lastname@example.org Mary Fredericks, Secretary (212) 674‐9128 email@example.com Joe Gordon NYJGordon@aol.com Toni Iacolucci, NYC Walk4Hearing Co‐chair
Captioning at NY Baseball Stadiums The new Yankee Stadium has been declared a “model of accessibility to people with disabilities.” In compliance with the Americans with Disabilities Act (ADA), the stadium boasts free assistive listening devices; captioning in centerfield and on video boards in right and left fields, as well as on televisions throughout the stadium; home‐game schedules and other print materials in Braille or large print; 506 wheelchair spaces, 530 companion seats, and 490 designated aisle transfer seats; wheelchair lifts in both the home and visiting dugouts; 16 public elevators that service all seat locations; accessibility at every entrance, in bars and lounges, and in restrooms; electrical outlets at guest services booths and many seating locations for re‐charging wheelchairs and other medical equipment; and allowance of service animals. Thanks to Ed McGibbon for representing HLAA at Yankee Stadium accessibility meetings, said Joe Gordon, Chair of the HLAA‐NYS Captioning Committee. For additional information or questions about accessibility at Yankee Stadium, contact Yankees Disabled Services at (718) 579‐4510, (718) 579‐4595 (TTY), or firstname.lastname@example.org. The new Mets stadium, Citi Field, now provides captioning, as well. For more information, go to:
Shera Katz, Web Site Coordinator email@example.com Anne Pope, Immediate Past President, HLAA Board of Trustees; NYC Walk4Hearing Co‐chair firstname.lastname@example.org Ellen Semel (212) 989‐0624 email@example.com Susan Shapiro, Treasurer firstname.lastname@example.org Dana Simon email@example.com Elizabeth Stump, Newsletter Editor ElizabethMStump@gmail.com Diane Sussman firstname.lastname@example.org Advisory Members Amy McCarthy Lois O’Neill Robin Sacharoff Professional Advisors: Josh Gendel, Technical Director, Center for Hearing and Communication (CHC) Laurie Hanin, PhD, CCC‐A Exec. Director, CHC Joseph Montano, Ed.D., Director, Hearing & Speech, Weill Cornell Medical College
WHAT YOU MISSED IN APRIL Mary Fredericks
Our April 21 meeting was special: the Chapter’s co‐ founder Joe Montano came to talk to us about hearing aids (and our other co‐founder Kiki Smith was in attendance). Dr. Montano is Assistant Professor/Director of Hearing and Speech at Weill Cornell/NY Presbyterian Hospital. He has also published Adult Audiological Rehabilitation, the first textbook of its kind. He understands that people with hearing loss need more than just hearing aids, so his focus is on rehab. Joe mentioned different brands of hearing aids, but it is his belief that the brand does not matter as much as what the hearing aid does for you. An audiogram gives only limited information, essentially whether the hearing loss is sensorineural (in cochlea or beyond) or conductive (middle ear), and also whether the loss is mild or severe. But it does not tell the audiologist how the loss affects you. Why do people get hearing aids? Mainly due to communication problems at home, work, school, and in noisy environments. But why don’t they get them? The stigma attached to hearing loss: “I must be old (and there is a negative perception of aging in this country). I don’t want people to know. If I need fixing, then I must be broken.” Hearing aid manufacturers are now addressing these issues with new marketing tactics, directing them to younger, more athletic populations. In determining who is a candidate for hearing aids, these are the factors to be considered: motivation (do you want the aids or is someone else pushing you); self‐assessment (how well do you function with your hearing loss); acceptance (of your hearing loss); financial (do you need a basic analog or a digital model with all the bells and whistles); cosmetic (do you want to show your hearing loss or keep it secret). Many companies have different “platforms” – entry‐ level aids, mid‐range, and top of the line. As Joe said, the guts of those hearing aids are essentially the same. As they get more expensive, we can do a little bit more. But as far as quality hearing goes, you will get excellent help even with an entry‐level aid. Recent developments include transposing frequencies, feedback reduction, open fit, multiple microphone arrays, and automatic features. Hearing aids can’t distinguish speech from noise, but there is
help: omni‐directional microphones pick up sounds from all around; directional mics emphasize sounds coming from in front of you but they do not rid the environment of noise. The newest trendy thing is Bluetooth connectivity, but this provides a narrower bandwidth than the hearing aids. (Phonak’s I‐Com device is a Bluetooth receiver, as is the Oticon Streamer.) Just because something is new doesn’t mean it’s for you. Some people expect hearing aids to solve every problem. But they don’t, and other technology can help: T‐coils, FM systems, audio loops, to name a few examples. Another way to go is with self‐help therapy: LACE (Listening and Communication Enhancement) is a software program of 20 sessions to use on your computer, involving training for degraded speech (rapid speech, competing voices, loud noise). Get this from your audiologist or at www.neurotone.com. “Seeing and Hearing Speech” is another computer‐ based program, basically speechreading training; this is available from www.sensimetrics.com. More independent research on hearing aid performance is needed. Most research is done by hearing aid manufacturers; while it is good, it is not unbiased.
Our condolences to Chapter member Hollace Goodman, whose father passed away in April.
Success in College Oh, the Places You’ll Go! by Dr. Seuss is a common gift for high school graduates. But here’s another one, specifically for teens with hearing loss who are about to make the transition from high school to college (or those already in college): “Hard of Hearing Students in Postsecondary Education: A Guide for Service Providers,” developed by the Postsecondary Education Programs Network. Get it online here: www.pen.ntid.rit.edu/newdownloads/resources/docu ments/other/pepnet_resources.pdf.
4 inner ear. If there is usable residual hearing after surgery, a hearing aid may be of help. If the hearing is not usable in the operated ear, and if the hearing in the other ear is normal, then a bone anchored hearing aid (BAHA) can be utilized, particularly in suboptimal listening situations such as those with background noise. The BAHA is a partially (surgically) implanted device that picks up sounds on the side of the deficient ear to transmit the acoustic energy by vibration across the skull to the functioning inner ear on the other side. The user can then hear and understand words in the hearing ear from the “deaf” side. If the auditory nerve is anatomically intact after acoustic neuroma surgery, sometimes a cochlear implant or brainstem implant might be used in exceptional circumstances (i.e., if the patient is bilaterally deaf). Most hearing devices undergoing development for acoustic neuroma patients are the brainstem implant types to bypass the absent or dysfunctional auditory nerve to directly stimulate the auditory nuclei in the brainstem or higher places along the auditory pathway in the brain. —Paul E. Hammerschlag, MD
Tuesday, May 19: HLAA Chapter Meeting Wednesday, May 27: Center for Hearing and Communication (formerly the League for the Hard of Hearing) College Planning Workshop; contact Astrid at email@example.com or 917‐305‐7820 for more information and to register (by May 15th). Thursday, May 28: Center for Hearing and Communication Cochlear Implant Support Group 50 Broadway, 2nd Floor; 5:30pm to 7pm *For more information, call (917) 305‐7751 or e‐mail firstname.lastname@example.org. Tuesday, June 2: Scholarship Reception in lieu of regular Chapter meeting Tuesday, June 9: Center for Hearing and Communication Golf Tournament; for more information, call (917) 305‐7804 or go here: www.lhh.org/calendar/events/events_golf.html. *Register for the annual national convention — and HLAA’s 30th birthday — occurring June 18‐21, 2009, in Nashville, Tennessee. Go to www.hearingloss.org/convention. *Audiologists, Speech Pathologists, CART Reporters, take note: AAA, ASHA, and NCRA are granting continuing education credits for the Nashville convention. For more information: www.hearingloss.org.
What is Advocacy for People with Hearing Loss? It is securing the services and access we need to move forward with our lives; it’s educating the public to the fact that there are 31 million people nationally who experience some level of hearing loss. Who advocates for what we need? WE DO! We have written to Congress in support of hearing aid tax credit bills, signed petitions, and submitted comments in support of induction loops for New York City subway booths. Were you one of the 500 people who participated in our inaugural Walk4Hearing last October? Then you have engaged in advocacy work, and we thank you! We have much more to do. And the greater our presence, the better our chances of success. Our newly established Chapter Advocacy Committee (AC) will focus on two general areas: 1) Work on projects of particular interest to you that may also have broad chapter appeal, such as increasing the availability of captioning in movie theaters. We will provide the guidance and support you need to be a successful advocate. 2) Support legislation at the local, state, and national level.
Ask The Expert!
Q.: Are there hearing aids for people who have lost hearing through acoustic neuroma surgery? If not, are there any that are being developed? A.: An acoustic neuroma is a benign tumor that may develop on the hearing and balance nerves near the
5 Each of us needs to find the way that’s most comfortable for us to get involved. You will feel rewarded in terms of what you will accomplish for yourself and your peers. We may have lost our hearing, but we haven’t lost our VOICE. To join the Advocacy Committee or ask questions, e‐mail us at: email@example.com. 2009 Walk4Hearing! October 18th is the Manhattan Chapter’s 2009 Walk4Hearing! To get in the mood for the upcoming Walk, watch a captioned DVD of walkers from all over the U.S. demonstrating their team spirit. Visit http://hlaa.convio.net/site/PageServer?pagename=vi deo_and_info for the video. And then visit the 2009 Walk site, www.walk4hearing.org, and form a team to raise funds! have been very promising! Our grant will enable CHI to expand this program by including more students who can benefit from this service. The second grant, in the amount of $12,000, will be awarded to the Hearing Loss of America’s National office to produce a video about HLAA’s work and the services we provide. The video will be posted on the HLAA Web site and copies will be made available to any chapter that requests it. It has the potential to reach millions of people all over the country as well as corporations and potential sponsors, hopefully translating into increased membership and impact for our organization. The Manhattan Chapter will be credited with funding this important project and may even be highlighted in the video! We will keep you posted. Please note that our Walk4Hearing proceeds have also paid for the induction loop system at the Muhlenberg Library Community Room, as well as for this newsletter, CART access at meetings, and other important services to our members and the community. We hope that you will join and support our 2009 Walk4Hearing in Riverside Park on October 18th so that we can continue to raise funds for these wonderful programs and services! Protein Discovery Linked to Usher Syndrome A team from the University of Leedsʹ Faculty of Biological Sciences, in collaboration with the U.S. National Heart, Lung, and Blood Institute, has discovered how to switch the myosin 7 motor protein on and off —knowledge which will pave the way for future studies on certain forms of hearing loss. The myosin 7 motor protein is found in the cilia (tiny hairs) of the inner ear. There are an estimated 40 myosin motor proteins in the body, with all cells containing different types of myosin. Yet the discovery that myosin 7 motor protein behaves differently from other myosins is exciting, the study authors said, because mutations in myosin 7 have been associated with some forms of hearing loss, particularly Usher syndrome. Once the key to how myosin 7 works is fully known, scientists will be closer to treating Usher syndrome (an inherited, degenerative condition affecting sight, hearing, and balance; there is no cure). The March 2009 study is here: www.pnas.org/content/106/11/4189.
Grants from 2008 Walk4Hearing We are pleased to announce that the Planning Committee of the Manhattan Chapter has chosen to fund two very worthwhile projects with our 2008 Walk4Hearing proceeds. The first grant, in the amount of $5,000, will be awarded to the after‐school program at the Children’s Hearing Institute (CHI) in New York City (www.childrenshearing.org/home.html). Founded in 1983, the Institute provides funding for research, educational support, and other programs related to the restoration of hearing for infants and children with hearing loss and profound deafness. In 2008, CHI began a pilot program of academic support and literacy that targets low‐performing elementary school deaf and hard of hearing children. The students, who are referred from three New York City schools, come for homework and reading help twice a week for an hour and a half. Tutors include teachers of the deaf and bilingual professional tutors with experience in working with children who have literacy challenges. The students generally come from families where English is not the primary language of the parents, so there is an added challenge for the parents as well as the children. The results so far
6 New Form of Hearing Loss A new gene — called SLC17A8 — has been identified by an international team of scientists as being responsible for a previously unidentified type of congenital hearing loss, according to a study published in The American Journal of Human Genetics in July 2008. The type is characterized by reduced ability to hear high frequency sounds, but the age at which it appears and the degree of hearing loss varies among individuals. This newly discovered form of hearing loss is very similar to age‐related hearing loss but occurs earlier in life. The good news is that it is possible to be screened for the gene and the specific type of hearing loss associated with SLC17A8. Also, thanks to the gene discovery, researchers may learn more about the causes of age‐related hearing loss. Read more here: www.sciencedirect.com/science?_ob=ArticleURL&_ udi=B8JDD‐4T3W1P1‐ 6&_user=10&_rdoc=1&_fmt=&_orig=search&_sort= d&view=c&_acct=C000050221&_version=1&_urlVer sion=0&_userid=10&md5=ad2aac60766d64cd9b8692 9016d45d0d. the full article here: www.audiologyonline.com/articles/article_detail.as p?article_id=477.
*Deaf Sentence, by David Lodge, is a delight for readers with hearing loss. It is very satisfying to identify with Desmond, a retired linguistics professor, as he attempts to cope with his growing hearing loss, pretending to understand all by nodding agreeably. His experiences with his hearing aids and speech reading are sure to provoke memories for many of us. I highly recommend it! —Estelle Abrahamson *Immediate Past President of HLAA Board of Trustees Anne Pope co‐authored, along with Carren Stika, a chapter on the benefits of peer support groups in Adult Audiologic Rehabilitation, edited by Joe Montano and Jacqueline Spitzer, and recently published by Plural Publishing (www.pluralpublishing.com).
The text book is the first on rehabilitation for audiologists. Audiologists are trained to be diagnosticians, hearing aid providers, and speech language therapists, but don’t have the time or information to help with rehabilitation, Anne said. Hopefully this book will help turn the tide! Hearing Aids Based on Specific Languages In the future, people around the world with hearing 10 Misconceptions About People with Hearing Loss loss may select a hearing aid based on the language 1. Everyone with hearing loss uses sign language and they speak (today, aids are programmed for different reads lips. listening situations depending on your hearing loss). 2. Increasing the volume will enable them to Marshall Chasin, AuD, MSc, an audiologist in understand what is said. Toronto, wrote, “How hearing aids may be set for 3. Hearing aids & cochlear implants restore hearing different languages” in the Oct. 2008 Hearing Review. to normal. It explores differences between languages that would 4. People with hearing loss are older. impact how hearing aids are programmed for people 5. They are stupid and unsuccessful. in diverse countries. 6. They only spend time with other people with hearing loss. Compare English with Chinese, for example. In 7. Having a hearing loss is shameful. Chinese, tonal changes on the lower frequency 8. When they miss something, it’s OK to say, “It’s not vowels can make a difference as to what a given important.” word means. In English, however, changes in tone do 9. They are rude and pushy. not alter what a word means. 10. They are defined by their hearing loss. Individuals who are bilingual could ideally have a (From The Hearing Access Program. These are not hearing aid formulated with two programs the only misconceptions that exist of course, but a depending on the two languages they speak. Read starting point for conversation and awareness.)
Access to the Arts in New York City
OPEN‐CAPTIONED THEATER ‐ Find captioned theater listings nationwide on www.c2net.org Theater Access Project (TAP) captions Broadway and Off‐Broadway productions each month. Tickets are discounted. For listings & application www.tdf.org/tap or 212‐221‐1103, 212‐719‐45377 (TTY) *Upcoming OPEN‐CAPTIONED Shows: [See TAP for tickets] Mamma Mia! (5/23, 2 PM); Accent on Youth (5/30, 2 PM); Desire Under the Elms (6/7, 3 PM)
OPEN‐CAPTIONED MOVIES –
For updated listings, go to www.insightcinema.org/links.html or www.regalcinemas.com/movies/open_cap.html REGAL BATTERY PARK STADIUM 11,102 N. End Avenue–Vesey & West Streets (212) 945‐4370. REGAL–UA KAUFMAN STUDIOS CINEMA 14, 35th Ave. & 38th St., Long Island City (718) 786‐1722. REGAL–UA SHEEPSHEAD BAY‐BROOKLYN, Knapp St & Harkness Ave (718) 615‐1053. REAR‐WINDOW CAPTIONED MOVIES ‐ For listings go to www.FOMDI.com. Ask for a special window when buying your ticket. The window reflects the text that’s shown on the rear of the theater. AMC Empire on 42nd Street. (212) 398‐2597, call Tues. afternoon for next week’s schedule Clearview Chelsea Cinemas, 260 W. 23rd St., Auditorium 4, 212‐691‐5519. www.clearviewcinemas.com/tripod.shtml The Bronx: AMC Cinema Bay Plaza, 718‐320‐1659. MUSEUMS WITH CAPTIONED EVENTS & ASSISTIVE DEVICES ‐ The Metropolitan Museum of Art, 1000 Fifth Ave. 212‐879‐5500 Ext. 3561 (V), 212‐570‐3828 (TTY) Real‐Time Captioning of lectures upon request – This service requires at least three weeks notice. Gallery Talk with ALDs (meet at gallery talk station, Great Hall) The Museum of Modern Art, 1 East 53rd St., Access Programs 212‐708‐9864, 212‐247‐1230 (TTY) ALDs are available for lectures, gallery talks, & Family Programs. Infrared is available in Titus Theaters.
Hear Us Now!
If you are experiencing problems with the Internet, TV and radio, cable and satellite, and phones and cell phones, visit the “Hear Us Now” section from Consumers Union, which publishes Consumer Reports. “Share Your Story” by visiting www.hearusnow.org/ot her/share.
Taxi Looping We will have the opportunity to test an induction loop in taxis after our May 19th meeting. If you have not already tested the induction loop, please go down the block a bit toward 8th Avenue right on West 23rd Street and you will see taxis waiting with a sign about an induction loop. Take a minute to test out the loop with your hearing aid/cochlear implant on t‐coil. Be sure to take a return postcard on which you can evaluate your experience, and remember to mail the postcard the next day.
*Reminder: the DTV transition deadline is June 12! For FCC assistance: Tel #: 888‐225‐5322; TTY #: 888‐835‐5322 www.dtv.gov
Grateful Acknowledgement Thanks to Tower Copy East (370 Third Ave. at 27th St., www.towercopyeast.com) for giving us a discounted price for the printing of N&V! Tower Copy East is also an in‐kind sponsor for our Walk.
Mention of suppliers or devices in this newsletter does not mean HLAA‐Manhattan endorsement, nor does exclusion suggest disapproval.
c/o Barbara Dagen, 141 E. 33rd St. (3B) New York, NY 10016
FIRST CLASS MAIL (DATED MATERIAL)
Please check your address label for the date of your last dues payment and, if you are a National member, there will be an “NM” after the date. Report any discrepancies to Mary Fredericks. Thanks!
Manhattan Chapter Annual Membership Application
Please complete and return this form, with your chapter dues of $15 (payable to HLAA-Manhattan) for the period September 1, 2008, to August 31, 2009 Send to: Mary Fredericks 520 East 20th St. (8E) New York, NY 10009
NAME (please print)_____________________
HLAA Membership Application Please complete and return this form, with your dues payment of $35 for a one-year membership (including subscription to Hearing Loss Magazine) To: HLAA Membership, 7910 Woodmont Ave. Suite 1200, Bethesda, MD 20814.
NAME (please print)
ADDRESS/APT_____________________________ CITY/STATE/ZIP________________________ PHONE (Home or Work?)_________________ E-MAIL ADDRESS_______________________ SEND A NEWSLETTER BY E-MAIL YES NO MEMBER OF HLAA NATIONAL? YES NO HOW DID YOU HEAR ABOUT US? ________________________ ADDITIONAL DONATION_$_______________ TOTAL ENCLOSED_$____________________
ADDRESS/APT_____________________________ ____________ CITY/STATE/ZIP________________________ PHONE (Home or Work)__________________ E-MAIL ADDRESS_______________________ ARE YOU NOW A MEMBER OF HLAA NATIONAL? YES NO (receiving Hearing Loss Magazine)?______ IF YES, I.D. No.________________ ADDITIONAL DONATION_$_______________ TOTAL ENCLOSED_$____________________
HLAA is a volunteer association of hard of hearing people, their relatives and friends. It is a nonprofit, non-sectarian educational organization devoted to the welfare and interests of those who cannot hear well. Your contribution is tax deductible to the extent allowable by law. We are a 501(c)(3) organization.
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