October 2016
Colin’s cochlear implant journey
Colin’s cochlear implant journey Rediscovering music after 40 years of hearing loss
From the Medical Director A/Professor Catherine Birman, SCIC Cochlear Implant Program Medical Director
It has been an exciting couple of months as we continue to grow and support thousands along their hearing journey.
Welcome to the October edition of Stay Tuned. It has been an exciting couple of months, as we continue to grow and support thousands of implantable hearing device recipients along their hearing journey.
In August, we celebrated Hearing Awareness Week, to help raise awareness for the needs of Australians who are deaf or hard of hearing. SCIC Cochlear Implant Program participated in many events and activities during the week all around Australia. We shared the stories of nine of our cochlear implant recipients through local news and radio, and I was also delighted to speak with Amanda Vanstone, host of ABC Radio National’s Counterpoint program on the topic of ‘Ear buds, hearing loss and dementia’ to answer questions about noise induced hearing loss. We also put our support behind the Break the Sound Barrier campaign, which aims to put hearing health and well-being on the national political agenda. With one in six Australians affected, hearing health and wellbeing deserves to be a national health priority. I would encourage you to visit the campaign website to see how you can assist with this cause: breakthesoundbarrier.org.au On 16 September, we were joined by newly-appointed Disability Discrimination Commissioner for the Australian Human Rights Commission, Alastair McEwin to officially launch and open our new centre in Canberra. Alastair brings to the position extensive personal and professional experience of disability, and shared how he is looking forward to working in his new role. He spoke favourably of the important role 2
that service providers play in empowering people with the confidence to be valuable participants in society. In this issue, cochlear implant recipient Colin Trinder shares with us his life changing story since receiving a cochlear implant. We are also calling on you to let us know any stories you have to share with us in our Congratulations Corner. This issue features two wonderful stories, first from Athavan, who is one of the many who ran the City2Surf this year to raise funds for RIDBC and Bryton who won a bravery award at school. If you’d like to submit something to share for a future issue of Stay Tuned, please get in touch with us. We are always working to raise awareness of the extraordinary work our dedicated and experienced team deliver, yet with the increasing demand for our services and our desire to improve accessibility, our costs are forever increasing. We are reliant on your support to ensure we meet these demands and are able to continue to provide world class implantable hearing solutions for all our present and future recipients. Donations can be made using the form on the back of this edition of Stay Tuned, by calling 1800 043 411, or online at scic.org.au/donate Thank you for your continued support and we hope you enjoy reading this issue of Stay Tuned. With best wishes, A/Professor Catherine Birman SCIC Cochlear Implant Program Medical Director
Colin’s cochlear implant journey 56 year old Colin, is one of many adults being supported by SCIC Cochlear Implant Program, an RIDBC service.
For environmental consultant and O’Connor resident, Colin Trinder, a cochlear implant has been life changing. “I lost my hearing quite suddenly following a trip to the Kokoda track in 2009,” said Colin. “I had some sort of adverse reaction to doxycycline medication prescribed for malaria prevention which induced Meniere’s syndrome causing tinnitus and vertigo episodes over a period of about two years.” By the time the Meniere’s symptoms disappeared Colin had lost most of his hearing in his left ear. “I initially got by with a hearing aid in that ear but by 2012 there was very little hearing remaining on that side. Then in September 2013, I suddenly lost most of my hearing in my right ear in the space of a couple of hours one evening while having a quiet dinner with friends.” It wasn’t until Colin’s hearing deteriorated almost completely that he sought a specialist’s opinion regarding cochlear implantation. “This is quite strange, but as a young public servant in the then Science and Environment Department in the very early 1980’s I actually took the minutes at an interview with the inventor of the cochlear implant device, Dr Graeme Clark, who was applying for a research grant for development of the technology. I’m pretty certain we gave him the grant!” said Colin. “Jumping forward 35 years, I decided to explore the cochlear implant route for myself and did some research of my own about advances in cochlear implant technology and sought expert
advice. I concluded that my only option was to pursue a cochlear implant if I wanted to stay functional in my kind of lifestyle.” As soon as Colin’s cochlear implant was switched on, life changed. “When the implant was switched on my first impression was that the sound was a little bit tinny but many words and sounds were immediately audible and recognisable to me. It was actually much better than I expected and within 24 hours sounded pretty natural,” said Colin. “The effect I immediately noticed was the instantaneous return of the ‘3 dimensionality’ of the soundscape – even in a quiet environment, that having hearing input from both sides gives me. “I’ve had my cochlear implant for only about a month but I’ve tested it out in noisy bars and restaurants, group settings, boardroom meetings and auditoriums and I don’t think I have missed a word. I’m still learning all the functions of the accessories but I feel that my hearing comprehension is now about as good as a normal person again.” Colin recommends that anyone struggling with their hearing should investigate the options available. “I definitely would say that from my experience you don’t have to put up with being sidelined in conversations because of hearing difficulties - particularly in those social settings where the background noise is challenging. If you are struggling to get much assistance out of your hearing aids you should definitely consider a cochlear implant. For me the procedure was entirely painless and the effect way beyond what I really expected.”
For more information about cochlear implants or SCIC Cochlear Implant Program, visit scic.org.au 3
Services update
We continue to grow and expand our services and nationwide reach, to continue to provide implantable hearing solutions to more Australians. The official opening of RIDBC Canberra in September was a great success! The development of RIDBC Canberra was made possible with the support of four significant grants, together valued at $730,867. RIDBC is extremely grateful to the Trustees of The Profield Foundation Trust, The Dorothea Collins Trust Fund, The Veolia Mulwaree Trust and The Snow Foundation for financing the development of this new, state-of-the-art facility. We are also looking forward to completing refurbishments to our centre at the Australian Hearing Hub Macquarie Park in early 2017. The centre will continue to operate as we make these modern state-of-the-art upgrades, which will add to the existing benefits of the centre and convenient access to parking and public transport. Thank you to all of our supporters and contributors for your involvement in our program. Bart Cavalletto Director, Services Royal Institute for Deaf and Blind Children (RIDBC)
RIDBC has officially launched its new purpose-built centre in Canberra, located in the Equinox Business Park complex in Deakin, in September. Alastair McEwin, recently appointed Disability Discrimination Commissioner for the Australian Human Rights Commission, joined the launch event on Friday 21 September, as special guest presenter. “RIDBC brings together a variety of different professionals under the one banner, it plays a very important role in providing a one-stop shop for service provision,” said Mr McEwin. RIDBC’s Canberra centre provides access to the full range of RIDBC services, including SCIC Cochlear Implant Program. The centre is co-located with Canberra ENT (Dr Peter Chapman and Dr Tim Makeham), alongside RIDBC’s therapy, education and cochlear implant services for children and adults with vision or hearing loss.
[L to R]: Anne-Marie Crowe (RIDBC Canberra Centre Manager), Dr Peter Chapman, Tathira Fatema (with Amaya), Stephen Denny and Dr Tim Makeham (Canberra ENT)
“RIDBC’s enhanced Canberra service focuses on community relevance, community support and ease of access,” said RIDBC Chief Executive, Chris Rehn. “The centre provides convenient on-site access to Canberra-based ENT surgeons who work in local hospitals, meaning residents no longer have to travel outside the ACT to receive the support they need.” During the launch, we heard from Kirsten, a local Canberra cochlear implant recipient, who first made contact with SCIC Cochlear Implant Program in January 2015. Kirsten had normal hearing until her late 30s and then started to lose her hearing slowly. She received a cochlear implant in her left ear in May this year. Since switch-on, Kirsten has been highly motivated to make her cochlear implant work. Kirsten has exceeded expectations, recently achieving 100% sentence and 80% word scores at her 3 month review. Before her cochlear implant she could only achieve 24% of sentences and 4% of words.
Kirsten Musgrove (SCIC Cochlear Implant Program recipient) sharing the story of her hearing journey
Stephen and Tathira, parents of Amaya, also shared their story. Tathira and Stephen made contact with SCIC Cochlear Implant Program in early 2015 after Amaya was diagnosed with profound bilateral hearing loss. Amaya received bilateral cochlear implants in July 2015. From switch-on a few weeks later, Amaya has responded beautifully to sounds and her speech and language has developed extremely well. She is always keen to communicate and participate in sessions during our Music and Movement play group. She has recently celebrated her 12 month hearing birthday. Disability Discrimination Commissioner, Alastair McEwin delivering his address 4
Rediscovering music with Canberra Symphony Orchestra after 40 years of hearing loss “One of the important things is you start to recognise the different instruments in the orchestra, so it’s much easier to listen to say a quartet or a duet than the full orchestra. “But the full orchestra’s such fun, you can’t miss it.” Program Helps People Rediscover Music
Kristen Sutcliff has helped Peter Cianchi enjoy music again. By Lish Fejer and Kim Lester (666 ABC Radio Canberra)
Imagine your favourite song being confined to a memory because hearing loss means it’s no longer a joy to listen to. “What would it be like to hear it again, decades later, through a cochlear implant? Peter Cianchi stopped listening to music after he was diagnosed with Meniere’s disease in his 40s. The disease affects the inner ear causing gradual hearing loss and balance. “One of the problems with Meniere’s is that you find you lose all sense of pitch,” Mr Cianchi told Lish Fejer on 666 ABC Canberra.
Mr Cianchi found help through a music rehabilitation course run by the Canberra Symphony Orchestra (CSO). The Rediscovering Music Program reintroduces music to people with hearing loss through concerts where participants can both watch and listen to the performances and interact with the musicians. The program helps people recognise different instruments and how they sound through hearing aids and cochlear implants. Audiologist Kristen Sutcliff who runs the program said it could be a sad predicament for some people. “When their hearing loss gets worse and if they have to have high-powered hearing aids or they have cochlear implants, sometimes they lose that enjoyment of music,” she said. “Typically they’ll find pitches harder to differentiate so they won’t know whether it’s a lower or a higher pitch.
Live performances help people with cochlear implants and hearing aids relearn how to listen to orchestral music. (Image supplied: Canberra Symphony Orchestra)
“So for nearly 40 years I didn’t listen to music at all — [especially] classical music — which I adore. “Then with my cochlear implant suddenly I found things weren’t out of tune. “I rushed out and bought a gramophone and started playing music that I knew.” However, Mr Cianchi quickly realised the sounds of the orchestra were not as he remembered. “I discovered that you have to work pretty hard to try and make sound come back again so that you can understand it,” he said.
“We also lose the timbrel aspect of music, so for example you might play one piece on a violin and then play it on a flute and someone with a cochlear implant, without any visual cues, may not be able to tell which instrument is which.” Mr Cianchi said it was two of the musical greats, Schubert and Beethoven, who inspired him to rediscover his love for music. “I noticed that Schubert also was afflicted with sickness, and then I remembered Beethoven went deaf,” he said. “I thought blow it, if these people can do all of this wonderful work it’s not going to stop me from doing anything I want. “It’s never going to be the same as it used to be, but that’s immaterial. “What’s important is that you get the feeling and you get the same thrill and excitement of the music and that’s really what matters.” 5
Important device information From Lyn and Sue
Make sure you have spare parts for your processor during the holiday season With the holiday season approaching it is a good idea to check now that you have basic spare parts such as a coil, coil cable and a battery unit, and fresh drying crystals to store your processor. Often it is only a replacement part that is needed to get a faulty processor working again. If you are Australian Hearing eligible contact the Australian Hearing Cochlear Implant Call Centre on 1800 131 339 or cisupport@hearing.com.au If you are not covered by Australian Hearing you can buy your parts from: » Cochlear contact 1800 620 929 or customerservice@cochlear.com » MED-El contact 1300 744 782 or office@medel.com.au » Advanced Bionics contact (02) 8858 1600 or customerservice.au@advancedbionics.com
Swim this summer with waterproof accessories Waterproof accessories allow you to enjoy all water activities whilst still using your processor. You can swim underwater in all water types including salt water, chlorinated pools, soapy water and lakes. » The Aqua+ is a soft silicone sleeve that fits over cp910 or cp810 processors, and there is special Aqua+ coil to use. The Aqua+kit sells for $275.00. » The Nucleus Aqua Accessory Reusable is a reusable plastic pouch that completely seals in your processor. It is suitable for cp910, cp810 and Freedom processors. A pack of 5 sells for $25.00. » Waterwear is a waterproof cover that can be fitted to Rondo, Sonnet, and Opus 2 processors.
Tips for travelling with your cochlear implant
» The Aqua Mic headpiece and Aqua Case are waterproof options for the Naida and Neptune processors.
» Take your Patient Identification Card for airport security purposes. If you do not have a Patient Identification Card please contact us.
Aqua+ kits are available from our centres. Waterproof accessories can be purchased from Cochlear, Medel and Advanced Bionics.
» Make sure you know where your nearest clinic is on your travel path in case you need emergency assistance. This information can be found on the Cochlear, Med-El and Advanced Bioinics websites. Take a copy of your most recent map, a printout from your audiologist will be fine.
Empower Yourself!
» If you have a back-up processor make sure you take this with you (and back-up parts), and that it has been programmed with your latest map. » You can walk through the metal detectors and full body scanners with your sound processor turned on. However, you may hear a buzzing sound so take your processor off if you wish to avoid this potential sound. You don’t need to turn your processor off during take-off or landing. The Remote Assistant should be powered off during take-off and landing. » To cover yourself against loss or accidental damage to your processor make sure your processor is insured.
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Learn how to manage your processor, change spare parts and maximise its use in different listening situations. Take a look at the following websites: » cochlear.com/wps/wcm/connect/au/home/support » medel.com/user-support » advancedbionics.com/com/en/support.html Our staff can help you with questions, don’t be afraid to ask if you are unsure of something. There is a lot to learn about a new processor, remote assistants and accessories and we understand it takes time to absorb all the information. Always carry a small container (with some identification on it) for your processor if you will be taking it off during the day. Processors which are put straight into pockets can easily be lost. Processors left out in the open or by the pool make a wonderful toy for a dog to chew or a kookaburra to snap up! Your local SCIC Cochlear Implant Program centre sells Cochlear accessories You can buy Cochlear Microphone Protectors, the Aqua+, and Cochlear Wireless Devices such as the Mini Mic, Phone Clip and TV streamer from your SCIC Cochlear Implant Program Centre. Please contact us to order these products.
Congratulations Corner Athavan ran the City2Surf to raise money for RIDBC in support of his sister Harini who has bilateral cochlear implants “The day went well. First, my dad and I got on a train to Martin Place, where the race started. We met our friends there and at 9:30, off we went! There was loud music playing in the streets along the way and thousands of runners in the streets! Halfway through the course, I somehow lost my friends and my dad but luckily half an hour later, they all found me. We finished the race in just under 3 hours. My mum and sister were waiting at the finish line to greet us.“
Bryton – ‘How I Hear’ storyboard Bryton gave a presentation to the whole of Year 5, using a storyboard visual he developed with his parents. The storyboard was designed to help educate his peers on what it means to Bryton, in a practical sense, to cope with hearing loss at school. Consequently Bryton was nominated for a school bravery award, which reflects the core value of courage. Mr Lloyd (his classroom teacher) said, “Bryton was nominated because he demonstrated outstanding bravery, by standing in front of his peers and speaking so clearly and eloquently about a personal issue.” The students and teachers enjoyed Bryton’s presentation immensely and valued learning more about living with hearing difficulties and Bryton’s personal journey with bilateral cochlear implants and Auditory Neuropathy Spectrum Disorder (ANSD).
Submit your story to congrats@scic.org.au to be featured in the next issue!
Introducing our Donor Care team Over the past 18 months, you may have noticed a change in the way we communicate with you. We have consolidated our fundraising and donor care services into one team, to streamline our processes and ensure that the level of engagement with our valued supporters is maintained. We have introduced a donor care hotline which puts you directly in contact with our donor care team who will be able to answer your donation queries and process transactions immediately. We have introduced a new reply paid service and we ask that all donations and correspondence about your gift be directed to Reply Paid 9828 in your capital city. We have a new email address scicdonor.services@ ridbc.org.au and we have updated our online donation pages to go through RIDBC’s website. Rest assured your gift will still be used to support SCIC Cochlear Implant Program. If you would like to discuss this or talk to our donor care team, please call 1800 043 411. For all other services, our contact details remain unchanged. If you would like to make a donation online, please visit www.ridbc.org.au/scicgift
[L to R]: Nicole Cotton, (Donor Care Team Leader), Colleen Matthews, Belinda Patton, Phyllis Burns, Yudy Makmur 7
Your gift to SCIC Cochlear Implant Program is vital in order for us to continue to provide our crucial services. Did » » » »
you know? In 2015: We supported over 2850 implant recipients, and performed 432 new implant surgeries 48% of surgeries were performed in public hospitals 62 of our recipients were children under 16 receiving their very first implant 251 of our recipients were adults receiving their very first implant
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Gifts over $2.00 are tax deductible. SCIC Cochlear Implant Program, an RIDBC Service collects personal information to assist in the processing of donations, issue tax receipts where applicable and send updates. While SCIC Cochlear Implant Program may disclose your information to trusted third parties such as our mailing house and our bank, we will not share your information with any other charity. Please contact us on 1800 043 411 if you do not wish to receive mail from us. For more details on privacy, please read our privacy policy at ridbc.org.au/privacy-policy OCT 2016