So, I am thinking this might be my last ever post on this blog.

I have reached the point where there is not really much new stuff to report.

I know it has only been 7 months since I got the implant (7 months! is that all???! Can you believe it?) But already, I think I have reached the peak, and plateaued. The implant will not get any better or different now in my right ear. It has reached its’ ‘zenith’.

And what a zenith that is.

I can hear on the phone now. Very well.

Normal pjhone and TTY phone now sit on my desk together.

It's goodbye TTY, hello normal phone since I had the implant. However, I keep the TTY on my desk just in case! Can't shake the feeling of needing it there.

So well in fact, that I have had a normal phone installed on my desk at work alongside my trusty TTY phone that I always used when totally deaf.

So, as you can see – the cochlear implant actually did what I dreamt it would do – it allowed me to reconnect with the world on the phone again.

I can also hear a lot better in group conversations and meetings. Where I used to strain to hear someone at the other end of a meeting table, now I can sit back and hear almost every word. That never ceases to amaze me.

The things I still can’t do all that well are:

  • hearing lyrics to music (I can hear them better than I could with the hearing aids, but they are still a bit unclear at times)
  • watching movies and TV – I still need captions if I am going to really relax and enjoy movies and TV – however, I have been to see Avatar and
    TV captions

    I still need to watch TV with captions. Which is why it's so frustrating when they don't have them!

    District 9 without captions, and understood most of it. I can also understand most TV news without captions.

  • I still tend to lip-read in noisy environments, but I can hear people a lot better in noise.

So, if I am going to leave anyone with a word of advice, or perhaps a message to the deaf community, or maybe parents considering an implant – having been through this all before, having met so many people who’ve had implants, having talked to ENT surgeons, doctors, audiologists and researched online – it would be this:

Kate’s Final View on Cochlear Implants

Disclaimer, this is only my view, no one elses. You might think it’s completely wrong, yo! If you do, then leave a comment, but make sure its a clever, well-thought out comment. I’ll delete stoopid ones!

  • A cochlear implant is not a cure for deafness. It is just like a hearing aid, except it is implanted in your head.
  • It does work wonders for some people, and not so well for others, just like hearing aids. To find out whether you are a good candidate, you need to see your cochlear implant specialist. A normal audiologist just won’t cut it – they just don’t know the real facts and figures.
  • It appears that people who go deaf later in life are probably going to benefit most. I was one of those, losing hearing over ages 11-19 years.
  • It appears that people who are deaf since birth, and get the implant after 5 years old seem to find it harder to adjust – maybe because of crucial years of language development have passed? Not sure.
  • From what I have seen, deaf people who get an implant before the age of 5 years old seem to find their cochlear implant more useful.
  • Even with an implant, you will always be deaf, and something like 20 per cent of the time you will not be using it (i.e. swimming, shower, in bed, when playing messy sports), so it pays to learn sign language and lip-reading to use with your family and friends.

I am glad I got the implant. I am also glad I waited because it was an emotional ride. But I would do it all again, definitely. If I had a deaf child tomorrow, I would give it a cochlear implant before the age of 4, teach it sign language and show it how to lip-read.

There, getting off my soap-box now.

Here are my final test results for the 6 month test at the Sydney Cochlear Implant Centre – please note the disclaimer my audi asked that I include on my hearing aid result!

These are the test results for my Phonak hearing aid in my right ear:

These are the test results for my Phonak hearing aid in my right ear: Note: These hearing aids use “Input Compression” or “AGCI” (Automatic Gain Control for inputs). This feature means that the hearing aids vary the amount of amplification according to the loudness of incoming sounds. Soft sounds are amplified more, while loud sounds are amplified less. The complexityof the aids means that they amplify warble sounds used in aided threshold testing differently to running spech. For this reason, aided thresholds measuired with a non-linear aid can only give a general impression about what is audible for complex sounds such as running speech.

Freedom Cochlear Implant hearing test result

This is the test result for my Freedom Cochlear Implant, in my left ear.

My final speech recognition tests were:

Sentences

  • 100 per cent for both hearing aid and cochlear implant together
  • 100 per cent for just the cochlear implant
  • 66 per cent for just my old hearing aid

Words

  • 84 per cent for just the cochlear implant (I was zero per cent when I used my hearing aid)
  • 20 per cent for just my hearing aid

So, I as you can imagine, I am contemplating getting a second cochlear implant.

But I am going to hold off for a few years, only because the hearing aid balances out the sound of the cochlear implant, and makes everything sound ‘normal’.

So I guess you could say ‘watch this space’ – I may come back with a new blog:

“Kate’s Second And Hopefully Final Cochlear Implant”!

Who knows!

Until then, bye, and thanks for reading!

Kate Locke, signing off!

Kate Locke, signing off! That's it from me - have a great 2010!

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So it’s been four and a half months now since I got the cochlear implant in my right ear.

I haven’t written an update in a while, because I haven’t felt like there is anything interesting to report!

But I guess what I think of as being boring, my family and friends might find interesting.

So, here we go.

Since I last wrote, I am hearing so much better than before – in fact, my last sentence and word perception test had these results:

  • sentences – 100 per cent
  • words – 87 per cent
  • sentences in noise – 95 per cent

So… yes. It is amazing. I am still profoundly deaf when I take off my cochlear implant and hearing aid, but now I can actually hear stuff when I have them on.

I’ve been having conversations with Ben without facing him, so it looks like I can definitely hear some people without lip-reading.

I have also been still using the web captel trial put on by ACE.  This means I’ve been able to practice using the telephone calling normally, and still listen and hear what people are saying.

And I am pleased to say that I can hear most of what people say on the phone now, without captions. Amazing. People have no idea that they are speaking to a deaf person on the phone.

When I call Ben or mum, I don’t use captions at all. Ben always whines now when I call – “Why do you have to call me all the time now!?” HAHA! He liked it better when I just texted. Now I am calling up to say things like: ” I am walking down the street! What do you think of that! I am passing a garbage bin. What are you doing? Look, a bird!”

And as for other news, I have been elected to the board of ACCAN, which is the Australian Communication Consumer Action Network – this will mean that I can really make it known what deaf people, or those with other disabilities will need in order to stay connected in Australia. For example, people don’t realise that for the Web CapTel trial to work, it is important that you have a stable internet connection that doesn’t drop out. If it drops out you may be logged out or your captions will stop coming through and you will have to reconnect. Imagine having to do that during an important phone call!

I’ve also been nominated and shortlisted for a 2009 Australian Human Rights Community Award for work with deafness and disability in Australia. WOWSER! Doubt I will win (you should see the actual shortlist! amazing people), but it’s still a hugely great honour to be shortlisted!

As for other stuff happening with the cochlear implant – I was over at my friend Georgia’s house the other week, having an ‘infrared sauna’. She runs a natural therapies studio. She gave me a pamphlet to read in the sauna so I could see all the good stuff it was doing. At the very back in tiny letters it said: “Do not use this sauna if you have an implant i.e. pace maker or silicon.”

And I was like “WHAAAAAAAAT!!!!!??” slapped my hand over my ear, and jumped out – thought maybe my head was going to explode! I mean, I didnt have the external bit on, but I thought maybe it might melt my brain, make it come out my ears, and turn me into a zombie.

It didn’t however (that might have been kind of cool), and I checked with Cochlear Ltd later – they said that according to their information from engineers etc, infrared shouldn’t affect cochlear implants (nor should any other sauna – good to know!).

Yay for cochlear implants. Such a new invention, it’s like being the first person to walk on the moon or something. You just don’t know what might happen when you do stuff that is considered normal! like brains exploding from saunas. Awesome.

This is an interesting one.

Since my last post, I have been trying the phone more and more, and find that I can’t always hear what people are saying really clearly. No matter what program on the implant I use, it’s not always clear. Some days I can hear, other days I can’t. Some people I can hear, other people I can’t. All very inconsistent.

But I have discovered something really cool.

The first ever captioned telephony trial is taking place in Australia right now, it started last week, and 100 people from around Australia were selected to take part after registering.

I am one of them, and I have taken part in the ‘Web Captel’ trial a couple of times in the last couple of days.

Using webcaptel is so much better than the old TTY phone system. You can hear and speak normally with the person on the other end, and read what they say as captions on your computer screen. Awesome.

Using webcaptel is so much better than the old TTY phone system. You can hear and speak normally with the person on the other end, and read what they say as captions on your computer screen. Awesome.

Basically, the way it works is you must have a computer in front of you connected to the internet, and a telephone, either mobile or landline.

I’ll tell you how I called my bank the other day:

I visted the website url they gave me, and logged in (you must have a username and password).

Then I simply typed in the phone number of the phone that was sitting next to me, and then the phone number of the bank I wanted to call.

Pressed enter…

Suddenly, my phone rang.

I picked it up – there was no one at the other end, but all of a sudden, the website page I had open popped up a text pane, and the relay officer in Brisbane started typing: “Calling number as requested… Ringing…”, and then, listening to my phone, I could hear the ringing sounds at the other end.

“Hello?” I said uncertainly.

“Hello, this is the bank, how can we help today?”

And the words of the other person suddenly came up on the screen in front of me as I listened to her – word for word.

I squealed with delight!

“I want help with my homeloan please! Eeeeeee!”

“Yes sure… Account number please, and your [brsghsghgh behjhjee and jsjkdksj].”

Suddenly I had missed something she said, so I waited half a second, and it soon appeared on my computer:

Yes sure, account number please, and your password and name as it appears on the account.

Dang! This thing, it worked! I gave her the answer, and then I just couldn’t contain myself:

“Miss, this is the coolest thing ever, did you know you are talking to a profoundly deaf person, and everything you are saying is appearing in front of me in text on my computer? It’s called WebCaptel and it is soooo cool!”

She said, “Um… what? webcaptel? I’m on your computer? uh… that’s .. ” then she laughed, “that’s great! … yes, wonderful! …”

And I could hear the smile in her voice. You can’t hear smiles with the normal Tele-Text Typewriter phones that the deaf use (the ones I normally use…) because you can’t hear anything, it’s only text you read, and it’s like a two-way radio.

So this new Web Captel service, I predict, will completely change the way deaf people use the telephone, and therefore communicate.

It’s also brilliant for practicing listening with my cochlear implant.

If you are interested in reading more about captioned telephony in Australia, visit the ACE website, or have a read of the ACE Web Captel user guide.

Today it feels good to be deaf in 2009.

This is an important shout-out to all my Australian readers with a hearing loss.

The Australian Federal Government has launched a full Senate Inquiry into deafness!

Is there anything about having a hearing loss or being deaf that frustrates you?

  • Have you ever felt annoyed at the cost of buying – and maintaining – hearing aids and cochlear implants?
  • Have you ever been upset by the low standard of services of an audiologist?
  • Ever wished you could stay with Australian Hearing after you were 21 years old?

The Australian Federal Government want to hear from EVERYONE in Australia about what issues they face when they have to deal with a hearing loss.

They are planning on using your input to change the way hearing health is dealt with in Australia.

It is so important that you email them to let them know what it is like for YOU personally.

All you have to do is send a short email to community.affairs.sen@aph.gov.au by 9 October 2009, letting them know what frustrates you most about your hearing loss in Australia, and what you would like to change.

I have done one already. If you need help in knowing what to write, have a look here.

https://katelocke.wordpress.com/2009/10/01/submission-australian-senate-inquiry-hearing-health/

This is your chance to finally let your Government know how difficult it can be living with a hearing loss in a hearing world.

Don’t miss this chance.

30 September 2009

Re: Inquiry into Hearing Health in Australia

To the Community Affairs References Committee (community.affairs.sen@aph.gov.au):

I would like to make a submission to the Hearing Health Inquiry.

I am a deaf young professional living and working in Australia.

The current Australian hearing health system is antiquated and not working well at all – it makes being deaf in Australia very difficult and expensive.

For example:

  • my hearing loss was first discovered at age 11, and I was given hearing aids without any sort of rehabilitation or support. it took me ages to get used to them and to wear them. It was a traumatising experience as a child. I didnt wear the ones I was given at 13 until I was 18, because I hadnt been given adequate support in understanding how to use them
  • When I did start wearing them, I received free hearing aids and batteries through Australian Hearing which was fantastic, and really helped.
  • then suddenly at the age of 21, just when I was unemployed and studying full time at university, I was told I could no longer get any services through Australian Hearing
  • I had to find a private audiologist, and many that I had didnt understand my hearing loss well enough, and I bought hearing aids from each of them, when one would have been enough. Each hearing aid is about $3,500 to $4,000. I was also convinced to buy expensive additional gadgets  for up to $1,500, which I have never used, because it was not correct for my hearing loss.
  • One of my hearing aids broke and I had to buy a new one, as it was not covered under private health insurance
  • I had to get a personal loan to pay for it, and then I had to go on Centrelink payments as well, because I had trouble paying my rent.
  • I have just received my first cochlear implant. I had to take out private health insurance in order to get this over 3 years at $90 per month. None of my hearing friends pay anywhere near this amount for private health insurance.
  • I had to take out special cochlear implant insurance at $300 per year to cover my cochlear implant, when someone who has an ipod can get that covered with their home and contents insurance. I have tried to get my cochlear implant covered under home and contents, and all the big insurers refuse to cover them.
  • I’ve had to buy a special TTY phone and special Telstra HipTop mobile phone in order to communicate with people, as these are the only two I can use being a deaf person.
  • Audiologists charge huge amounts for ear moulds when you don’t need them (up to $250), and for repairs (up to $500), and for batteries (they cost me $300 a year).
  • I have been to see the Minister for Ageing about these issues, but as hearing health is under Ageing, it’s not the main part of the portfolio. Hearing health gets lost in Ageing. It needs to be put over into Health.
  • Hearing health is not an ageing issue, I am only 29 years old, it is a health issue. Many of my deaf friends are under 30 years old.

There is an essential inequity as to how hearing health is perceived as compared to other health issues, even though hearing loss is one of the most prevalent health issues in Australia.

According to the Access Economics Report, one in six Australians has some form of hearing impairment, and this is projected to increase to one in four by 2050 (from Access Economics (2006) Listen Hear – The Economic Impact and Cost of hearing loss in Australia).

I would like to see the following changes made to the way hearing health is dealt with in Australia:

  1. Hearing health should be moved out from under the Federal government Ageing portfolio, and placed under the Federal Government Health portfolio, alongside eye health. It currently does not receive the attention it deserves under the Ageing portfolio.
  2. Subsidised government services should be offered via ‘Australian Hearing’ to people between the ages of 21 and 65 if they are on a low income, unemployed, full time students, or part time students. In Australia there is currently no help for these people in affording hearing aids, implants and other hearing health services.
  3. Insurance companies should cover hearing aids and cochlear implants if they are lost or broken. Currently most insurers will cover silly things like iPods, but not a cochlear implant processor, which is $8,000 to replace, and vital for many to be able to hear.
  4. Former child clients of Australian Hearing who are not unemployed, students, or on low incomes should not be suddenly cut off from services of Australian Hearing. They should be able to pay for services to stay on at Australian Hearing with their audiologist.
  5. All hearing aids, cochlear implants and other hearing health aides should be able to be claimed as a tax deduction once someone starts work. Currently you can’t claim expensive hearing aids as a tax deduction.

Thanks for accepting my submission.

Sincerely,

Kate Locke

Have you ever wondered how deaf people listen to music or watch movies or TV?

To understand what they are hearing, they usually need captions.

I used to be able to hear normally… and one of the things I really miss is being able to hear the lyrics to music.

I can hear some music quite well with my one remaining ear – jazz, alt rock, folk. Other music of course sounds horrific (mainly violins/classical, and heavy metal).

Unfortunately, daggy pop-music sounds quite good to my ear – which means Britney Spears, Katy Perry, that Swedish band that sang ‘Barbie Girl’…

However, as a deaf person, I can’t hear lyrics, so, unless I ask someone, I have no idea what they are singing about.

I have a very clear memory of when I was about 17, driving to Newcastle with my mum. She always let me play the music I liked (what a mum!!!), and there was this song I loved called “Remember me” by Blue Boy. I used to sing along with it, because I thought that the words were “meh meh mehmeh- mehmehmeh meh meh meh”

I finally asked mum whether they were actually saying anything, and I remember her saying “Well, let me see…” and she rewound the tape, and went through the entire song, listening, and sang me all the words, so I could lip-read them.

Thinking back – what a wonderful wonderful thing my mum did for me. All the more so because the words are SO STUPID AND ATROCIOUS!

See lyrics below!!!

Remember Me, by Blue Boy, 1997
Chorus:
Remember me, I’m the one who had your babies.

***YES, WHAT YOU ARE READING IS CORRECT: This is the only line in this song!!! It is repeated several times.

I actually preferred the song my way, with all it’s “meh meh meh”s

If you are interested, check out the video clip. This is still one of my all time favourite songs. I wonder if it’s because I can hear the beat so well. I can hear the singer’s voice still, but like I said, it just sounds muffled.

Check it out:

This is a YouTube music video of one of my favourite songs - "Remember Me" by Blue Boy - I never realised how stupid the lyrics were, until I got my mum to sing them to me. Click here to open YouTube and watch it. You will need sound.

This is a YouTube music video of one of my favourite songs - "Remember Me" by Blue Boy - I never realised how stupid the lyrics were, until I got my mum to sing them to me. Click here to open YouTube and watch it. You will need sound.

Now, one other thing you might find interesting – there is a blog out there by a guy in America that is dedicated to captioning all videos online to deaf people like me.

For the first time ever I was able to watch a Britney Spears video with captioning, so I could understand the lyrics. I mean, most of the time I can lip-read Britney. And boy. Does she pronounce her “L’s”!! She sings like she is licking something… Which kind of captures what the whole Britney brand is all about.

But anyway, after watching these captions, I have lost all respect for Britney’s songs. Now I understand why people hate her. She just sounds really stupid!

But hey. Her tunes are good. Pity she doesn’t make up the tunes. HAHA

Check out Britney’s captioned video below!

Hilarious captioned version of "Oops. I did it again" by Britney Spears. Every music video should be captioned, because then maybe stupid lyrics would never be released!

Hilarious captioned version of "Oops. I did it again" by Britney Spears. Every music video should be captioned, because then maybe stupid lyrics would never be released!

I salute Bill Creswell, hero to deaf people, bane of brainless musicians, for Captioning the internet, one video at a time.

Me (mostly recovered!) and my nieces, Nina and Amandine, at Neutral Bay Wharf in Sydney.

Me (mostly recovered!) and my nieces, Nina and Amandine, at Neutral Bay Wharf in Sydney.

I am back to some semblance of normal life, being able to go back to work, and wash my hair. (Although am still without any sound in my right ear. Only 6 days until switch on.)

But having everything ‘go back to normal’ has had the interesting affect of making me much more aware of the changes to my head and ear.

My ear feels tender to touch now – whereas before it didn’t at all!

I get popping in my inner ear every time I swallow.

And I can REALLY feel the lump under my skin where the implant sits now – and I have to say that it is one thing that freaks me out. Sometimes I just walk down the street, with my hearing aid turned off, in total silence, feeling this lump under my skin on my skull, and wondering what it will sound like, what it is doing under there.

I mean, geez. I have a computer in my head! It’s going to take some getting used to.

One other thing that happened too, today – I was ‘testing’ how much I could hear in the implanted ear (basically nothing, until I get switched-on), but I got Ben to sing against my ear, and all of a sudden, I could hear his voice, though I couldn’t make out what he was saying – I could tell the pitch he was singing in, and the rhythm.

I got all excited, thinking that maybe the sound waves were making the electrodes move, and therefore maybe I would be able to hear without powering up the microchip – perhpas sound could be powerful enough to make the electrodes act like normal hair cells?

A dedicated boyfriend: thank you to Ben for yodelling into my ear when I wanted to 'test'.

A dedicated boyfriend: thank you to Ben for yodelling into my ear when I wanted to 'test'.

But then we realised that as soon as he moved away from my ear, i.e. let go of me, and moved his lips away from touching my ear, it was like the sound stopped. I couldn’t hear it anymore. Even though he was still yodelling away like a mad man. (*sigh* what boyfriends will do huh?)

In fact, I was feeling the sound through my body, via vibrations!

Before I got the implant, I couldn’t understand speech much at all in that ear, though I could hear noise – but I didn’t realise because I used to test it by saying “Ben, talk into my ear loudly”, and then I could make out what he was saying (usually stuff that made me blush). However, it turned out I was actually ‘lip-reading’ by the feel of Ben’s lips making the sounds against my ear – because once he moved away – again, it was like suddenly it became muffled.

But now I can’t even lip-read through my ear, but my body picks up the vibrations, and makes me think I am hearing sounds.

Weird I know. The human body is an amazing thing.

The bionic ear will have to contend with Super Ear!! who will win??

The bionic ear will have to contend with Super Ear!! who will win??

The other weird thing is that since getting the implant, the left ‘hearing-aided’ ear has gotten bizarrely super-sensitive. So I am hearing things out of it that I had never heard before. Like bumps and things coming from the apartment above us. Apparently they happen all the time, but I have only just started noticing it!

And my breathing! It sounds SO LOUD.

So, I don’t know, maybe my ‘bad ear’ was holding back the ‘good’ ear, and now it’s finally free, realised its destiny and become SuperEar.

But all this will probably change after the switch-on. 6 days to go.