Connecting with the community
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1. throughout Asia Pacific Europe and the US ith your community Robyn Carter Hearing Loss Classification Profound Duration of Hearing Loss 44 years Age at onset of Hearing Loss Birth Age at implantation 31 years Country New Zealand was born with a mild hearing loss but didn t get my first hearing aid until was 10 Unfortunately in my 20 s lost all my hearing At the age of 31 received a cochlear implant the eighth adult in New Zealand to receive one What a world of difference this made for me The implant gave me more hearing than had when I was 10 years old Within two years of having the implant my salary had doubled from promotions that had previously been passed over for wear my implant from the time get up in the morning until go to bed at night hate being without sound as it makes me feel disconnected from the world As well as CAN there Is also a wide range of user support groups in the Asia Pacific region including the following three working to establish connections In the community I 77367 P S WN Wwgy V8 19 2 25 gt n 7 ee was already helping out as much as could when needed for example talking to prospective implantees also wasn t working at that time so thought this would be a great way of giving back what the implant has done for me Being a member of CAN has enabled me to meet a wide range of people throughou2. skull base surgery head and neck cancer surgery advanced otologic surgery cochlear implant and bone conduction implant surgery to name just a few The department is one of a select few around the world that carries out ABI surgery Together with Professor Paul Fagan and Dr Phillip Chang Dr Nigel Biggs is one of the surgeons who specialises in auditory brainstem implants Here he talks to us about the successes and challenges of St Vincent s ABI Program When did the ABI Program at St Vincent s commence The first ABI was done in December 1995 There were no other programs in NSW and the only other program was in Victoria which started at about the same time How many recipients are there on the program There are only 2 patients who have been implanted with this device Can you tell us more about this group of patients The ages of those who have been implanted goes across the whole age spectrum from late teen years up to 0 s with the majority of the patients being under 40 The youngest patient was probably our first patient who was a teenager How well a patient does with an ABI is dependent on their motivation to wear the device as the device acts as an aid to lip reading Patients are implanted with an ABI as a result of losing their hearing in both ears from acoustic neuromas accidents or other pathologies that damage the acoustic nerve so that they are not able to have a cochlear implant This requires a device that
3. provide information for candidates and other recipients sharing their personal experiences at presentations lectures and classes There are also regular social functions such as BBQs amp dinners which allow members to socialise The group feels that while doctors and audiologists can tell you the procedures involved and what results may be achieved they cannot add the dimension of personal experience Furthermore CICADA members have experienced severe or total hearing loss and its impact on families and friends an issue not readily understood by the general community In order to further its work the group has links with organisations for the deaf and hearing impaired and has an interest in helping to lobby governments and health funds regarding policies sharing Experiences in ANZ The Cochlear Awareness Network for Australia and New Zealand was launched in September 2006 and now has 27 committed volunteers It s all part of the hearing experience helping people with shared experiences to connect said Mischelle Edmunds Cochlear Awareness Network Coordinator Our CAN members have delivered close to 200 presentations to community groups and many have told their stories in print and broadcast media in the hope of bringing hearing to more people than ever before said Mischelle If you are interested in becoming a member of the Cochlear Awareness Network please contact Australia amp New Zealand Mischelle
4. the amount of environmental sound you get Don t forget to leave on enough environmental sound when you re out and about e g driving or walking along the road Also remember you must use only your TV Hi Fi Cable when you connect to mains powered audio equipment Listen safely 02 TV Hi Fi Cable Connects to mains powered audio equipment like televisions home stereos personal computers and gaming consoles such as the Xbox or Sony Playstation You can change the volume in the usual way and use the sensitivity control to increase and decrease the amount of environmental sound you get 03 Lapel Microphone Provides an external microphone separate to your system s usual built in microphone Connecting this you will only hear sounds through the lapel microphone and you can adjust sensitivity and volume in the usual way Can be useful in especially noisy and challenging listening environments simply place the microphone close to the person or sound you want to hear 04 Telecoils Delivers greater clarity for listening on the phone Improves sound quality in buildings with a loop facility e g cinema 05 Telephone Adapter Improves signal strength and sound quality Get a telephone adapter for the better sound quality when talking on the phone The telephone adapter bypasses your implant s microphone and sends a strong sound signal directly to your processor Bone Conduction Implant Accessories 06 Audio adapter T
5. Edmunds at medmunds cochlear com au Southeast Asia Leah Labrador at Ilabrador cochlear com au China Rachel Wang at rwang cochlear com au Japan Harumi Ilwakawa at hiwakawa cochlear co jp It s extremely rewarding work You get to meet many people from all walks of life often making firm friendships It gives you ever growing confidence in yourself which is sometimes lacking because of your inability to hear Cochlear gives you lots of support encouragement and information and are great to work with think it s the best thing I ve ever done O2 ACITA Japan ACITA Association of Cochlear Implant Transmitted Audition is the association of cochlear implant recipients in Japan and was launched in 1988 The group s goals are to create opportunities for recipients to socialise and communicate with each other and to improve their quality of life in collaboration with medical professionals and manufacturers ACITA is pronounced the same as the word for tomorrow in Japanese and the founding members chose this to symbolise a brighter future for recipients The group currently has around 250 members Of these there are about 1 050 recipients and their family members with the remaining 200 consisting of unimplanted hearing impaired persons medical and educational professionals and manufacturers ACITA produces a quarterly newsletter in February May August and November every year providing members with the latest inf
6. always Community Connections Journey to Sound Accessorise Now 2007 Winner Baha Intenso Connecting with the community Hear now And always Cochlear IS a group like minded volunteers who want to make a difference Many thousands of people are missing out on getting a hearing implant CAN volunteers raise the general awareness of hearing implants within their local community letting others know the dramatic difference such implants can have on others with a significant hearing loss SY Cochlear Awareness Network All CAN members are either cochlear implant or bone conduction implant recipients and have volunteered to share their personal stories insights and experiences at various speaking engagements and in personal meetings Their role is that of an ambassador They offer support but not advice They share their knowledge but they are not medical professionals The volunteers are not employees of Cochlear and participate in activities in their own time Goals of the Cochlear Awareness Network e To raise community awareness of cochlear implants and bone conduction implants e To ensure that candidates receive correct information about Cochlear products e To offer support to candidates on the next steps for receiving an implant e To inspire audiences with their personal stories e To bring hearing to more people than ever before The Cochlear Awareness Network is a worldwide programme with volunteers
7. ar produces a range of materials for professionals or for you to use yourself with support from your hearing professional Sound and Beyond is a self paced interactive software application designed to help adult cochlear implant recipients practice and develop their listening skills It is formatted so adult recipients can work alone and teen recipients can work either alone or with a parent This comprehensive package is a multipurpose resource developed for professionals working with adults and older teenagers with a hearing impairment It serves as both a resource of rehabilitation materials and as a training guide for new staff The package consists of a guide booklet DVD and CD ROM Focusing on the natural bond that exists between parents and their children this auditory habilitation program is designed for children with a hearing impairment identified under 12 months This program helps parents guide a child through their journey into a world of sound listening and language development Consisting of a book and DVD this is developed for both parents and professionals to complement a child s habilitation program This easy to use software program for professionals can be used to generate individual rehabilitation material that is interesting for teenagers Topics include cars bikes fashion and space travel to name just a few Parents and professionals will also benefit from topics covering telepho
8. aught Rd Tokyo 13 0033 Australia Central Hong Kong Japan Tel 612 9426 6555 Wel 852 2530 57 3 Ter 8 3 3817 024 Fax 61 2 9428 6352 Fae 832 2330 5183 Fa BI 3 38917 0245 Cochlear Ltd Cochlear HK Ltd Singapore Branch Beijing Representative Office 6 Sin Ming Road Room 2301 Building 01 16 Sin Ming Plaza Blue Castle International Centre Tower 2 No 3 Xi Da Wang Lu Chaoyang District Singapore 575585 Beijing 100026 P R China Tek 656353 30 4 Tek 8610 8579 7924 Fax 65 6451 4105 Fax 8610 8599 9804 www cochlear com Cochlear the elliptical logo Baha Intenso Baha Divino and Sound and Beyond are trademarks of Cochlear Limited Baha and Nucleus are registered trademarks of Cochlear Limited Di EL First Words is a trademark of Hear Works Pty Ltd iPod is a registered trademark of Apple Inc Walkman and Playstation are registered trademarks of Sony Corporation Xbox is a registered trademark of Microsoft Corporation Cochlear Ltd January 2008 N31871F ISS5 Now Available Using powerful hearing devices can be an exercise in the art of compromise should you favour discretion at the cost of power or sacrifice discretion for better hearing With the new Baha Intenso Baha recipients don t have to make that choice This innovative small digital head worn device has been specifically developed to provide the power you ve been looking for as well as the discretion you desire My Intenso is much better than my prev
9. cochlear implants and the support from my family friends and teachers Financially the scholarship will also help me with the costs associated with university studies am so beyond grateful that was the successful applicant of the 2007 Graeme Clark Scholarship Having the cochlear implants has changed my life in many ways not only have my verbal and listening skills improved dramatically but am now able to do a variety of activities previously thought impossible Throughout my school life participated in an array of activities there was nothing that didn t do or couldn t participate in After received the first implant the list of activities that participated in was endless played the clarinet and the piano did jazz and debating was in the school play was involved with the swimming squad and played a variety of sports such as hockey netball cricket and racquetball also won numerous academic awards each year and was awarded a prestigious scholarship in my final year for overall endeavour to pursue excellence in all areas of school life Furthermore was truly fortunate to receive three university offers something that never thought would be possible truly believe that none of my activities and achievements would have been possible if it weren t for the cochlear implants Cochlear implants have allowed me to communicate and interact more in social environments especially with family and fri
10. e Also the magnet is not used with these patients instead they use a double sided sticky disk and often it can take a while to find the best position of the coil before you even get started It is also very common for these patients to have other non auditory sensations when they are being mapped which may be something like a dizzy feeling a nauseous sensation or even a nerve twitch in their leg These sensations can generally be programmed out NF2 patients have lots of other challenges that have to be considered when trying to program them What are some of the rewarding aspects of working with ABI A rewarding side to this work is that you are able to make people s lives a little easier than they otherwise would be without your input It means instead of being totally cut off from the world they are able to hear environmental sounds and have some help with lip reading Please note that the Nucleus 24 ABI is not available in all markets Please contact your local Cochlear office for additional information Specialist surgeon in auditory brainstem implants Winner announced The Graeme Clark Scholarship established in 2002 in Australia and New Zealand encourages Cochlear s recipients to undertake tertiary studies Twenty year old RMIT University student Kate Moss is the 2007 award winner Kate was diagnosed with a bilateral sensorineural profound hearing loss at the age of 12 months and turned to Cochlear becoming a recipien
11. ends If didn t have the cochlear implants doubt that would have the confidence to interact with people don t know This is why the implants are such a great blessing Go for it While had nothing to lose with the first implant must admit that had some feelings of doubt and reluctance which was only natural was most concerned with the notion that the implant would not be a success do understand that choosing to have a cochlear implant is a big decision My life has changed for the better rather than for the worse since choosing to have the implants When it comes to choosing whether to have a cochlear implant the sky really is the limit In life there are always challenges to meet With a hearing impairment it can be a tad more difficult While it hasn t been easy believed in the fact that if made the most of what was given and utilised it in an appropriate way could go a long way Everybody particularly my parents my three sisters and my grandparents helped me to believe that could do anything within reason They encouraged me to be self motivated enthusiastic and to involve myself fully in life Having a hearing impairment has certainly made a difference to my life but feel that have been able to meet that challenge with the support of so many people Do you know what the greatest compliment that can ever receive is The greatest compliment can ever get is being told by someone
12. his allows direct input from personal stereos TVs MP3 and Hi Fi equipment 07 Telecoil This improves sound quality and speech understanding with personal loop systems in the home and in buildings with a loop facility 08 MicroLink Baha FM receiver This receiver from Phonak enables link up with most FM transmitters Accessory usage can differ between different sound processors and can depend on how your programs are set up Please refer to your user manual for more information if required In NF2 patients hearing is often destroyed by the presence of acoustic neuromas tumours or by surgery to remove them which can require cutting the acoustic nerves For those NF2 patients with bilateral dysfunctional auditory nerves a normal cochlear implant is not an option as there is no neural connection between the cochlea and the brain However the Nucleus 24 ABI can restore a sense of hearing for these patients and can help them better cope with their chronic illness The Nucleus 24 ABI is also potentially beneficial for other situations where there is bilateral dysfunction of the auditory nerve such as cases of skull trauma The Department of Otolaryngology Head and Neck Surgery at St Vincent s Hospital in Sydney is known as one of the leading ENT departments in Australia and has gained national and international recognition as a centre of excellence for its clinical practice and teaching programs Its areas of expertise include
13. ious devices in all environments because it makes the sound clearer and more distinct says Marianne who travelled around Asia and enjoyed the higher power of the Baha Intenso Intenso doesn t just provide more power With advanced digital signal processing supported by Active Feedback Cancellation it is designed to deliver clearer sound quality in all types of listening environments plus far less irritation from feedback With its digital signal processing Intenso provides a tailor made response to your hearing loss and your environment It automatically reacts to protect you from sudden unexpected noises This improves sound quality in loud environments without the need for manual adjustments Integral to this concept is the flexibility of three listening programs e Program for everyday listening This helps you to hear best in most situations whether you re communicating with colleagues or communing with nature e Program 2 for comfort in noisier environments such as busy train stations or shopping centres It reduces the impact of unwanted low frequency noise for maximum comfort and protection e Program 3 for a relaxing break this lets you listen exclusively to external audio sources such as MP3 music players as well as FM systems If you need a quick break from the world of sound this program will also mute the sound processor Feedback can be a constant source of frustration and irritation In addition to lim
14. is implanted above where the lesion was situated So far we have only implanted patients who have Neurofibromatosis Type 2 NF2 and have developed bilateral tumours however patients with other pathologies have been implanted in other centres What are patient outcomes like with an ABI Patient outcomes are related both to how much information their implant gives them and their motivation to wear it The position of the electrode pad on the brainstem is very important with the ABI It does not have its position dictated by placing it in a defined organ and so it is much more difficult to get it in the best position During surgery intraoperative monitoring helps find the best placement allowing the surgeon to find a position that will not cause other nerves to be stimulated e g facial nerve and will give the best auditory signal Results in other centres have found that patients who are implanted for reasons other than NF2 have done much better achieving speech perception scores much more like a cochlear implant The reasons for this could be that either the tumour or the surgery to remove the tumour damages the cochlear nucleus resulting in poorer scores for the NF2 patients What are some of the challenges of working with ABI Programming an ABI is much more demanding than a cochlear implant because you have to find the best combination of electrodes possible for the best result electrodes are not pitched ranked as in a cochlear electrod
15. iting your physical movements the threat of annoying whistling can even force you to turn the volume down temporarily limiting your ability to hear clearly Baha Intenso addresses these issues with Active Feedback Cancellation AFC This sophisticated system constantly monitors the sound signal and if feedback does seem likely to occur swift steps will be taken to counter it The sound with Intenso is stronger than my previous device so it s easier for me to hear and don t get the same problems with whistling says Kare a recent Intenso convert Baha Intenso complements the existing range of Baha sound processors Baha Divino provides a state of the art head worn solution for recipients who need a moderate amount of gain amplification Baha Intenso is a more powerful head worn solution for those who need stronger amplification Last but not least for those that require the highest level of amplification there is the bodyworn Baha Cordelle II which is the most powerful sound processor of the three With the addition of the Baha Intenso to the range the Baha Compact and Baha Classic have both been phased out and are now no longer available Divino Intenso Cordelle II Excellent sound quality Excellent sound quality Bodyworn unit for through digital platform through digital platform maximum power Directional microphone for better High power for better audibility Inbuilt telecoil tone controls speech in noise
16. nd strong bonds were made during this difficult time Finally in 2006 the dream became reality with the registration of CIPS Today CIPS has more then 300 families in the group and its objectives have also evolved Activities now encompass a wide range of initiatives such as the rehabilitation of Cl recipients organising workshops to create awareness of hearing impairment and Cl assisting hearing impaired people in making a well informed decision about getting a cochlear implant and integration of recipients into mainstream schools The group is also involved with liaising with the government and its agencies on policies to improve the welfare of recipients and co ordinates its activities with other organisations working for the hearing impaired CIPS looks forward to a better and healthy tomorrow for hearing impaired children and welcomes more families to work together towards a brighter future for the hearing impaired Auditory habilitation for children and rehabilitation for adults can be an extremely useful and invaluable tool Many people find re habilitation helps them to get the most out of their cochlear implant system or bone conduction system There are many different schools of thought when it comes to re habilitation and there is a range of styles to choose from Different approaches appeal to different people but fundamental to the various methods is the need to concentrate on developing listening and speech skills Cochle
17. ne training and communication strategies is a valuable tool for early language development of young children Based on the language development of children with a hearing impairment Di EL First Words allows professionals to access information on language development to objectively assess a child s progress acquiring early language The CD includes a database video clips and printable resources to capture the first 100 words and any word combinations used while reaching this target This flexible program can be used as a written diary through email or regular phone call correspondence Accessories from Cochlear are all about connecting you to the outside world This could mean listening to a teacher in a classroom dancing along to the latest pop tune or enjoying a new blockbuster movie at your local cinema Some recipients prefer to use their system on its own but many find accessories are a great way to help them connect with the world around them Why not take some of your accessories out of that dusty drawer today and hear the difference Cochlear Implant Accessories 0l Personal audio cable Helps you keep up with all the exciting personal audio products on today s market Use the personal audio cable for simple connection to an iPod Walkman MP3 player portable radio or other battery operated audio products You can change the volume in the usual way and use the sensitivity control to increase and decrease
18. ormation on cochlear implants and a forum for communication An annual meeting is organised with members getting together from all over the country The meeting is open and friendly and provides several programs to understand more about cochlear implants with special lectures by medical professionals and presentations from manufacturers Members also enjoy the social activities and group tours that are arranged ACITA will celebrate its 20th anniversary this year and the commemorative annual meeting will be held in Tokyo in June Looking ahead to the future of ACITA the steering committee has already started preparations to make this fruitful event a major milestone in ACITA s history 03 CIPS India CIPS is the Cochlear Implant Parents Society of India Cochlear implants were a unique and groundbreaking technology in India with very few recipients in the beginning therefore the families of the recipients lacked a reference point to share their unique experiences and problems Five Cl families came up with the idea of forming a group of families with cochlear implants to support each other in a community where there were few others with whom they could identify Their vision was clear but there were many obstacles to setting up the group However they did not give up and were always ready to tackle any challenges to fulfil their dream In those early days CIPS only had support from the parents Cochlear and Pika Medical a
19. t New Zealand and Australia with similar experiences to mine It has enabled me to educate the public on what it s like being deaf to empathise with those going through similar experiences and to help them through their decision making process by answering their questions OI CICADA Australia It s a great feeling to get feedback from people on how my experiences have touched them in some small way or to know that because of my presentation someone has done something about their hearing difficulties or has gone on to receive a cochlear implant mainly give presentations to Grey Power Rotary or Probus groups around New Zealand also spend time with the Cochlear Implant Programme talking to people about their cochlear implants and answering their questions The other main activity do is write lots of letters to the government imploring them to increase funding for cochlear implants in New Zealand and to reduce the growing waiting lists CICADA is an Australian support organisation established in 1984 by cochlear implant recipients Its headquarters and Club Room are located in the grounds of Old Gladesville Hospital in Sydney The group is affiliated with various social groups and independent CICADA associations in other states and regions of Australia CICADA aims to provide support through fellowship educational and social interactions and produces national and state newsletters to keep everyone up to date Members
20. t in June 1998 when her hearing aids were no longer enough Extremely happy with her cochlear implant Kate became a bilateral recipient receiving her second implant in December 2006 which helped to improve her speech perception listening and communication skills and provided a greater spectrum of sounds Cochlear implants have been successful additions to Kate s life as she says I now feel that can hear so much more with two implants than with one and wouldn t change anything Kate was happy to share her experiences with us and what she thinks the future holds for her It was only due to the efforts of my audiologists Liz Winton and Rod Hollow from the Cochlear Implant Clinic who strongly encouraged me to apply for the scholarship There were several reasons why was attracted to the Graeme Clark Scholarship Firstly the financial assistance towards university studies was a huge incentive Secondly winning a highly prestigious scholarship was always going to look good on my CV and will assist me enormously in my future endeavours wherever may go On a personal level winning the scholarship has helped me in the sense that the judges have recognised my hard work determination and effort to get to where am today The scholarship has also given me the confidence in believing that can achieve anything that set out to do know without a doubt that wouldn t be where am today if didn t have the two
21. that they had no idea was deaf when communicated with them Whenever hear that compliment always silently thank Taralye an early intervention centre attended as a young child and Professor Clark They are both part of the reason as well as years of intensive speech therapy why am where am today am forever grateful to Professor Clark and how his invention the cochlear implant changed my life so radically When it comes to the cochlear implant would strongly encourage those considering this decision to go for it The results are truly amazing and life changing 2007 winner of the Graeme Clark Scholarship Award Australian and New Zealand students with a Cochlear implant system are invited to apply for the 2008 Graeme Clark Scholarship The scholarship is open to recipients who reside and undertake study in an accredited university in Australia or New Zealand For more details and the application form please visit www cochlear com au community 600 asp Entries close 30 June 2008 Share your journey to a world of sound with others Write in and tell us your story For further information on Cochlear and its products and services visit www cochlear com or contact your local Cochlear office or distributor Cochlear Ltd Cochlear HK Ltd Nihon Cochlear Co Ltd ABN 96 002 618 073 Rm 2106 21 F Ochanomizu Motomachi Bldg 14 Mars Road Wing On Centre 2 3 7 Hongo Bunkyo Ku Lane Cove NSW 2066 Conn
22. understanding Active feedback cancellation and electrical input Smaller housing comfort program Up to 65dBHL Up to 45dBHL Up to 55dBHL sensorineural component sensorineural component sensorineural component To further enhance your sound experience with Baha Intenso in different environments a range of specially designed easy to use accessories are available e Audio adapter this allows direct input from personal stereos TVs MP3 and Hi Fi equipment e Telecoil unit this improves sound quality and speech understanding with personal loop systems in the home and in buildings with a loop facility e MicroLink Baha FM receiver this receiver from Phonak enables link up with most FM transmitters Not yet available in all countries Please contact your local clinic for more information Hear Always Electronic Version In the interest of saving our trees why not subscribe to this newsletter in an electronic format Please go to www cochlear com newsletter where you can provide us with your email address Been trying to find a Hear Always article that you would like to read again Or maybe you missed out on an issue Back issues of Hear Always are available at http www cochlear com au Community 940 asp
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