I look so I can hear....

Eyes wide shut

Tina — Fri, 27 Jan 2012 00:15:41 +0000

I booked a third AVT session (Auditory Verbal Therapy) and Rashed came along to watch. My therapist Jacqueline took me through the Ling 6 sounds, saying each sound and repeating it, then giving me pairs, then sets of three. I was fine with AH, SH, S, but I got confused with the set of EE, MM, and OO. Need more practice!

We then moved on to closed sets of words. This means that Jacqueline will give me words that I expect to hear. I chose numbers between one and ten. Jacqueline sat behind me (as she knows I can lipread round corners) and gave me random numbers. I repeated them all back to her. I got them all right, but confused ONE and NINE … but I got that right after a little practice.

We worked on another set; transport. Jacqueline threw words at me, such as BUS, TRAIN, BICYCLE, TRICYCLE, AEROPLANE… out of 20, I got them all right except for two or three. I practised recognising the word by thinking about the sound of the word and not the shape. Being a lifelong lipreader, I automatically figure out what a word is by thinking about what makes sense and what doesn’t within a word and within the context of a sentence, what I am expecting to hear, and thinking about the shape that fits. It’s hard to break the habit of a lifetime. But thinking about the sounds, it was easier to understand what I was hearing.

We moved on to short sentences, and I surprised myself by being able to understand what had been said. Rashed sat opposite me and gave me some sentences, I listened and repeated these after him, then I responded to questions. Jacqueline joined in, and before I knew it, we were having a three-way conversation. With my eyes wide shut!

(Someone fell off his chair in shock)

Ryland uses the Advanced Bionics Neptune “swimmable” processors!

Tina — Wed, 14 Dec 2011 12:50:16 +0000

My Big Fat Georgeous Wedding

Tina — Thu, 08 Dec 2011 01:40:03 +0000

Please vote for Janette and Ally to win this competition, so Janette can have her dream wedding dress! I read their story on Facebook and I’m reproducing it here. This competition will work on a like/comment basis – only one comment and like per person will count (each voter has 2 votes, 1 vote awarded for a “like” and another vote awarded for a comment). The competition is sponsored by My Big Fat Georgwous Wedding. I can’t see a closing date, so get your votes in quick!

Link to vote for Janette and Ally on Facebook (log into your Facebook account first)

We have been together 9+ years. I had unhappy life before I met my partner Ally, I was so happy and alive since I met him, we both are profoundly deaf I use british sign language and so does Ally but he can lipread and has good speech. a year later, I went downhill after hospital diagnosed me with ushers syndrome and Retintis Pigmentosa means it will leads me to blind,I can’t drive at all, I have got tunnel vision, no perperial vision at all,I have stopped going out and do things I liked, because I was scared if I couldn’t see/hear cars coming, small children running about, I had couple of accidents that made me stop going out, I never went out for couple of years till Guide dogs came see me with cane training I did not like it and still would not go out, but I was given a guide dog called Vogue labrador x golden retriever, she was smartest dog ever I owned, she is very obedience. Since I got Vogue, my confident slowly building up, I have made some new friends. I used to hate do shopping, traveling on buses/trains but I do LOVE traveling now and enjoy my independence Vogue has helped me to take my daughters to school, Ally does a lot of cooking, making hot drinks as I feel cooking is not very safe as I tend to get burnt often due to my poor condition of eyes, I can’t work, I find it hard to find a job because I am deaf & blind Ally and Vogue always be here for me whenever I feel down or having a bad day, they always cheer me up. Ally means everything to me, I am very proud to be a guide dog owner so I can enjoy couple of wines so Ally can drive me home

Janette

- What a lovely family they make!

FDA approves Neptune sound processor

Tina — Thu, 01 Dec 2011 18:32:14 +0000

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States.

Today is a momentous day for us all. You have all been anxiously awaiting this moment and it has finally arrived! Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor

AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.

Industry’s First Freestyle Design

The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.

Useability and Durability

Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.

Performance

To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

To Learn More about Neptune visit www.advancedbionics.com today!

Neptune Brochure

Advanced Bionics press release

I got my hands on a Neptune processor last week. It’s stonkingly beautiful!

Neptune as worn in water

Neptune sound processor (rear) and removable Neptune Connect controls (front)

Neptune waterproof headpiece (white) and out-of-water headpiece (grey)

Can you breathe more quietly?

Tina — Thu, 01 Dec 2011 15:55:06 +0000

I had my 3 month review of my second cochlear implant today. It’s looking good and they’ve booted me out until September next year as my maps are stable and both ears are balanced. Sounds seem more solid with my left cochlear implant compared to my right, because this is the older implant with a learning gap between them of 18 months.

My hearing was tested and I have got exactly what my audiologist wants to see for bilateral hearing, an average of -20db.

We started testing the hearing on my left ear. I sat in front of a loudspeaker with my left cochlear implant on, and concentrated on listening to the beeps, pressing the buzzer in my hand when I heard a tone. I found it difficult to concentrate as I could hear this weird noise. I was sure it was inside the room. After a few minutes, I asked my audiologist what the intrusive noise was – it turned out to be my Hearing Dog’s breathing…. just a bit too loud! So we turfed him out of the room, found a dog-sitter (!), and you can see the improved listening results at 3000 and 4000 Hz after his exit.

Left cochlear implant hearing

Right cochlear implant hearing

Both cochlear implants tested together

I had a checkup with my surgeon and he’s very happy with the surgery sites. I then went to see my speech therapist, who gave me some speech perception tests, listening to sentences from a loudspeaker, with both implants. The results are;

Lipreading with sound: 98% (4 Apr 2011), 100% (1 Dec 2011)

No lipreading, sound only;

In quiet, 57% (17 Nov 2011), 84% (1 Dec 2011)

In noise, 27% (17 Nov 2011), 44% (1 Dec 2011)

Birding Through Vision and Hearing Challenges

Tina — Thu, 24 Nov 2011 00:09:20 +0000

Martha Steele

This article appeared in Bird Observer Vol.39, No.5, October 2011. Reproduced with kind permission.

This is a personal story about my journey through stages of birding defined by progressive vision loss and hearing challenges. I have Usher syndrome, an inherited disease that combines retinitis pigmentosa (RP) and hearing loss. RP is characterized by a progression of night blindness, increasing peripheral field loss (tunnel vision), and finally central vision loss, all the result of the retina’s rods and cones dying off. The rate of vision loss varies from person to person, with some individuals nearly completely blind by early adulthood while others have some functional central vision for life. Hearing loss seems to be relatively stable in Usher, although some progressive loss occurs.

I was diagnosed with severe hearing loss as a young child and have worn hearing aids since I was about four or five years old. But through my early adult years, I did not realize that I had any significant vision issue. I could not see well at night, but it seemed normal to me until a day in Colombia, South America, where I was teaching at a junior high school. Two friends noticed how often I bumped into things and wondered why. One friend spread her arms wide apart and gradually brought them closer together, asking me to stare at her face and tell her when I saw her hands out of the corners of my eyes. Her hands were practically touching before I saw them. At that point, we knew something was wrong.

When I returned to the US, I saw an ophthalmologist in my home state of Vermont. He came into the examination room after a series of tests, looked at my retina, sat back, and said, “I think you have retinitis pigmentosa. You will be blind in ten years, so I would advise that you not try to be a truck driver.” Ok, bad news, really bad news (about going blind, not the truck driver part), stunning and devastating actually. That was back in 1977. I learned shortly after his blunt diagnosis that the vision loss would be much more gradual and that I could expect reasonably good central vision for many years.

Fast forward to May 1989. My friend, Martha Vaughan, was leading early morning bird walks in Mount Auburn Cemetery for anyone at our work place in Cambridge who cared to join her. I showed up for one of her walks without binoculars, of course. She had an extra pair. I have a distinct memory of Martha walking through the front gates, and immediately raising her arm to the sky and exclaiming, “A parula!” I didn’t hear the parula nor any other bird, only her and other birders’ excitement at all of the songs filling the early morning air. However, I saw warblers, lots of warblers, and I was hooked. I asked Martha where I could get binoculars, and I opted for 10 power Zeiss binoculars because I wanted to see as well as possible, given my vision issues.

Early in my birding avocation, I had good central vision, so I could see birds well if I managed to get binoculars on them. But I could not hear most birds due to their high-pitched vocalizations because my hearing loss was particularly acute. A few species, such as Mourning Dove, have lower-pitched vocalizations that I could hear. I always marveled at the ability of birders to identify birds by sound, a totally unimaginable and unreachable experience to me.

Images depicting visual impairments

My birding strategy was to walk behind other birders, waiting until they stopped and raised their binoculars in a certain direction to find what they heard or saw. I stood behind them, looked in the general direction they were looking, and tried to see some movement before bringing the binoculars up to my eyes.

As the years went by, this strategy worked less and less as my vision continued to decline. My peripheral field became more and more narrow, making it increasingly difficult to detect movement of small, distant birds. I tried to contain my frustration at not being able to locate a bird despite everyone’s best attempts to describe where the flitting bird was. I relied more and more on someone, most recently my husband, Bob Stymeist, getting the bird in a scope.

Today, I can’t recognize faces five feet away, never mind a dark bird on a dark branch in a dark understory 25 feet away. Going blind may be one thing for a birder, but it is even more challenging for me because I never could hear the birds either. So why do I bird? The simple answer is that the birds are extraordinarily beautiful and I am constantly profoundly moved by their ability to survive, whether during migrations over thousands of miles or finding habitats sufficient for their needs. I cannot look at a Blackburnian Warbler and not say, “good luck, little fellow” or a Black-throated Blue Warbler and not marvel at its beauty. But one thing I never could enjoy was bird song. Until now.

I would walk behind Bob, who barely looked up from the ground, and wonder why isn’t he looking around to find birds? Suddenly, he would stop and locate what he had just heard. Or sometimes he would simply pull his notebook out, write down “CAWR,” and move on, never missing a beat. I always thought that strange, though I was well aware that birding is largely by ear.

With the continuing decline in my vision, I decided to explore whether I should get a cochlear implant, not for bird songs, but to better understand speech. Hard-of-hearing people use lipreading extensively to help them understand what is being said. I can no longer see well enough to lipread, so I knew I would lose more ability to understand speech, a sort of double whammy. After a lot of research, encouragement from other cochlear implant recipients, and evaluations at the Massachusetts Eye and Ear Infirmary, which found me to be eligible to receive an implant, I took the plunge.

The surgery involves drilling a small hole in the mastoid bone of the skull directly behind the ear and inserting an electrode into the cochlea, or inner ear. Then, an indentation is made in the mastoid bone to set the main receiver of the implant on the skull before the incision is closed up. The external component, the processor, is like a minicomputer that can be programmed and updated with new software as technology improves. A wire extends from the behind-the-ear processor to a magnet that attaches to the internal receiver. Sound is received by the microphone in the processor, digitized, transmitted via the wire/magnet to the internal receiver, converted to electrical impulses, sent to the electrode, and the electrical impulses are then sent to the auditory nerve, which goes to the brain.

The surgery usually destroys all residual natural hearing in the implanted ear, leaving one completely deaf in that ear. So, the decision to do the implant cannot be taken lightly. There is no guarantee that one’s hearing will be better after the surgery than it was before, and indeed, it may be worse. But I knew my hearing was getting worse anyway, and I knew with the declining vision, this would become more problematic with time, so the choice in the end was clear.

On April 9, 2010, I had surgery for a cochlear implant in my right ear (the left ear continues to have a hearing aid). The surgery was a day surgery. Forty-eight hours later, the bandage came off, and I was back at work in a week. On April 29, the implant was activated.

When the implant was first activated, everything sounded the same and very tinny or high-pitched. I couldn’t decipher distinguishable words. It takes time and practice for the brain to learn the new sounds and for the tinny sounds to eventually become words and then sentences. Within a couple of weeks, I could understand speech vastly better than before the implant, and time would only show continuing improvement. The implant enabled me to hear, for the first time, many consonants that are high-pitched and beyond many hearing-impaired people. I could actually hear the difference between Chicago and change; tap and map; go and toe.

What I did not bargain for was BIRD SONG. I was stunned, absolutely stunned, by the fact that I was hearing birds everywhere. Not just a little, but a din of bird song. How have you all put up with House Sparrows all your birding lives? They are so annoying! I had never heard them. How were you able to tell the difference between a Red-eyed Vireo and a Blue-headed Vireo, a Scarlet Tanager and an American Robin? To my computerized sense of hearing, these are still challenging, but I think I am getting a little better at it.

Just imagine if you could not hear bird songs, how much more difficult and perhaps less enjoyable birding would be for you. I now know how you might feel. Not long after my implant was activated, a Kentucky Warbler showed up at a small park near Boston College in Chestnut Hill. Bob and I went over to try to see it in the early evening hours on a weeknight. We were alone in a small oasis of dense vegetation, tall trees, small ponds, and thick underbrush looking for the bird. Then it started singing. The song echoed in the forest, sublime, melodic, and all encompassing. I couldn’t move. I didn’t care to see the bird. I only wanted to stand there, close my eyes, and listen. For those of you who know me, you can probably guess what happened next. Yes, I cried. Birds, especially the little songbirds, have a tendency to move me to my core, but the added dimension of hearing them left me feeling overwhelmed with joy.

Since then, Bob and I have gone on many walks as I try to learn the songs with this bionic ear. I am hearing songs while the car is moving at 40 miles per hour; I am hearing them from some distances; I am hearing them when songs are on top of each other; and I am hearing songs that some of you, because of age, perhaps can no longer hear, such as the Brown Creeper, Blackpoll Warbler, Blue-gray Gnatcatcher, or Golden-crowned Kinglet. Every time I hear a Northern Parula, I am reminded of that first image of Martha raising her arm to the sky, as I, too, raise my arm and, for good measure, do a little hop, to give body language to the song’s rising zeeeee-up

In June 2010, Bob and I visited Ed Neumuth in Washington, Massachusetts, for a wonderful visit and day of birding at October Mountain. We got up at 5:00 a.m. and Ed was the expert guide for a tally of 76 species, including Mourning Warbler, which I caught a brief glimpse of. But what I most remember about that day, and probably always will, was a moment when a Winter Wren was singing its heart out very close to the road. As we stood there marveling at its song, Ed related the story of a birding friend who was dying of brain cancer. His friend wanted to go birding one last time. Ed took him to October Mountain. They were stopped at one place when suddenly a Winter Wren perched on a bare branch just yards directly in front of them and started singing. The bird sang for several minutes, and the men were mesmerized. When it flew away, Ed’s friend turned to him and said, “Let’s go home now; nothing can top that.”

Nothing can top what the cochlear implant has given me. I can walk in the woods looking down at the ground—like Bob and all of you—and know that it is quiet or know that a Black-throated Green just sang. I am satisfied, deeply satisfied, to just hear the bird. I feel no urgency now to see the bird, and perhaps strangely, no particular loss at not being able to see most birds any more. It is the song that now gives me immense joy, it is song that now enables me to more deeply share my passion for birds with Bob and my birding friends, and it is song that now connects me to the birds that I love. Yes I, too, was mesmerized by the beautiful song of a Winter Wren on October Mountain. Good luck, little fellow.

Martha Steele is a past editor of Bird Observer and lives in Arlington with her husband, Bob Stymeist. She is a native Vermonter, and she and Bob frequently bird the Northeast Kingdom of Vermont, including competing in the 2011 Vermont County Quest (sponsored by Birds&Beans) for most bird species seen in specific counties (in their case, Essex, Orleans, and Caledonia counties). Martha has spent most of her professional career at the Massachusetts Department of Public Health. In addition to birding, she volunteers in the Boston chapter of the Foundation Fighting Blindness and serves as the chair of the October 29, 2011, Boston VisionWalk. Martha and Bob’s team, Strides for Eagle Eyes, has raised nearly $60,000 for research on blinding diseases since 2009.

HUDSONIAN GODWIT BY DAVID LARSON

Oscar

Tina — Wed, 23 Nov 2011 11:29:08 +0000

Jenny talks about her very special dog, Oscar…..

Oscar is not trained as a hearing dog, as I am hearing. Oscar and I trained with Dog AID (Dog Assistance In Disability.) Most Dog AID dogs are trained to help people who use wheelchairs and/or have walking difficulties. Many also have medical alert roles and act on instinct to put their owner in the recovery position in an emergency, bring the mobile phone and a blanket, and go and get help. Oscar did that without having had that training, it was just natural – when I was stuck in the bath! If the client has a hearing impairment then the dog is also trained to help as a hearing dog too. All breeds are accepted for training, it’s all down to the dogs temperament and bonding. It’s best to carefully choose a puppy and bring it on, than take on a rescue dog, as you can’t be sure of its past.

Oscar is an apricot miniature poodle, he was my best friend’s dog so I have known Oscar a long time, since 2006, my friend (his mummy) died after an operation so it was a bit sudden and unexpected. Oscar had been a child carer – or should I say a puppy carer – for his mummy, so he was a natural. Oscar came to live with me after she died. Oscar reminds me of her so much with his expressions, his zest and enthusiasm filling every moment.

I knew Oscar had the ability to qualify as an Assistance Dog and I needed his skills, so I contacted Dog AID. We were assessed; there was lots of paperwork, vet checks, a medical, OT reports etc and we were then put in touch with a local volunteer Dog AID trainer, who trained me to train Oscar. Oscar and I practised tasks between lessons with the trainer. It took just one year to pass all three exams but a lot of that time was waiting for the next assessment exam and a date for the final full certificate exam. So we both qualified as a team. The hardest part during training was that Oscar wasn’t allowed inside places so we had to eat outside in the weather, but we found 3 doggy-friendly pub restaurants that had wheelchair access. I was still waiting for an accessible kitchen at home so eating out was the solution, albeit expensive, it meant I saw a bit of life too.

Oscar has transformed my life. I don’t ever have to be alone. He smiles as I wake, he brings my clothes and pulls off my PJs, helps in the bathroom, brings anything I need and picks up dropped items, he uses the washing machine, on command he opens a cupboard and gives me a tea towel or anything else I ask for, and closes the door after, he brings the phone when it rings, or when I ask for it, the remotes, my keys, purse, and hands me his bowl when he has finished. When out and about he helps with my wheelchair footplates, he shops in the supermarkets from the lower shelves handing me what I ask for, he hands me dropped items, credit cards, receipts and he even found me a £10 note once and handed it to me. That was the brilliant – we had a good breakfast that day! I then bought Oscar a new toy with it, as how could I use Oscar’s money like that!

Oscar is good at guiding when my eyes are bad, and has a GPS mode – he can find places and gets me to the door safely and at speed even when I don’t want to go there sometimes! When my keys fell under my car, Oscar went under the car and fetched them and handed them to me. Another life saving moment! He undresses me at night, tugging off my socks, shoes, jumper and trousers. He tugs lights on and off, and opens and closes doors. He woke me up once, I noticed I had a blocked nose and there was Oscar with the decongestant spray, just what I needed! So he could do the Medical alert role if I needed it.

Oscar is everything to me, always there for me. He has given me my life back, and I can go out again now. In that way, similar to most people with an assistance dog, people see Oscar and smile, so I do see so many smiles reflected back to me, I love that. People stop and talk to me now. Oscar loves his work so much, particularly new places, new experiences, but its hard to find new wheelchair-accessible ones.

Dog AID currently has 29 qualified dogs working and 70 clients with dogs in training. There is a long waiting list and Dog AID’s volunteer trainers are working to capacity at the moment. Some areas of the UK have no trainers, so to grow they are in need of volunteer trainers to join Dog AID. Dog AID is always looking for more trainers. Everyone at Dog AID is a volunteer but they are fundraising to cover a post in the busy office. Dog AID will have a stand at Crufts again next year as it was such a success this year, growing the number of volunteer dog trainers and raising funds for more training workshops.

We have a lot of foreigners locally, working in the restaurants and smaller shops. It can be hard work to gain access and there seems to be a mysterious ramp stealer about, if I believe what is said….

“No, you can’t come in as someone stole our ramp!”

Every week another crowd of language students and tourists, with no skills in equal access, block the pavements – it’s hard for Oscar too. They dive in for a stroke, using flash to take photos. Poor Oscar is trying to concentrate and we are blocked and surrounded, he is blinded by flash and I am distressed … I have to be assertive or avoid those pavements as I can’t get off them to get around people. So you, like me, are educating the world, there are new challenges everyday.

Dog AID

Deaf Development Day at Sussex Yacht Club

Tina — Mon, 21 Nov 2011 13:52:35 +0000

The workshop is open to everybody who would be interested to take part in the sailing programme on 26 November 2011. This means that for example, if you want to train yourself as a new assistant dinghy intsructor at the club, the workshop would be for you to learn how you could get involved.

Likewise, if you want to take part simply in the taster session at Cowes Week 2012, you can find out more from the workshop. At the same time, you can meet the coaching team to discuss something such as your needs with them. It is rather like Open Day at City Lit.

This survey is for those interested in helping in a voluntary capacity to develop sailing opportunities for the deaf community? Do not worry if you do not have sufficient sailing skills as opportunities will be available to improve personal skills and achieve RYA qualifications.

http://www.surveymonkey.com/s/QKVS6YC

Deaf Sailing Development Day

Facebook: Deaf Sailing UK

Q&A: Cochlear implants and Ménière’s Disease

Tina — Sun, 13 Nov 2011 16:30:26 +0000

Hiya Tina

I wondered if you have any experience of Meniere’s Disease and it’s effect on a cochlear implant. I have had my implant for 3 years now but just recently it is struggling with fluctuating levels. I visited the implant centre but they could not help much and promised to contact Advanced Bionics. I have thought about bilateral but have not got a clue where to begin. Maybe my dreaded Menieres disease would badly affect a second implant anyway. Bit fed up with things at the moment.

- Colin Lennox

Q&A: Cochlear implants and concussion

Tina — Sun, 13 Nov 2011 10:29:32 +0000

Do you or any of your readers know of someone having a concussion after being implanted? My adult son was implanted 4 years ago…did great…but two years ago suffered a concussion that has left him with headaches so severe he cannot stand to use the implant…we’ve seen neurologists, chiropractor, acupuncture, etc…any one else with a similar problem??

- Brenda Brokke