hearing loss


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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Kate Locke making acceptance speech at Australian Human Rights Awards ceremony in 2009

Do I look a little nervous? Perhaps! Not every day you have to stand up in front of 400 people to talk for 3 minutes.

Can you imagine my face when they told me I had won? I was in shock.

It was the Australian Human Rights Community Award for an Individual.

It’s a big thing for me, because when you do the sort of stuff I am doing, it’s very lonely work – you think no one notices it. You do it, not for recognition, just for trying to change things for the better.

Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me.

You can actually hear the acceptance speech at the awards ceremony which was held at the Sheraton on Park in Sydney on 10 December 2009.

For all my deaf friends, I have asked them to please put up a transcript for hearing impaired people! And lo and behold, mine is the ONLY one that comes with a transcript. HAHA.

Click on the link below to hear the audio of Human Rights awards speech:

I turned 30 years old this week.

A real milestone for me.

It has caused me to reflect back on my life over the past few years …

I was thinking about how this blog has been exceptionally positive. When I started it in June last year, I actually thought it might be quite sad in tone, or dramatic. It has surprised me how very positive everything has been, how positive I have felt.

I had a very hard time when I was a teenager, and in my early 20s. Many people don’t realise just how difficult deafness can be. It is a hidden disability, an isolating disability, because it is one of communication.

I was in bed a few minutes ago, trying to sleep, but turning all my life events over in my head, thinking about the journey that has brought me here. It’s 4.45am now, and as always I think the best way to cure insomnia is to get up and write about what’s keeping me up! Once I get it out, I’ll sleep well again.

Sometimes I just can’t believe that I considered suicide.

When I was 21, all the difficulties associated with my deafness came to a head, and I decided to kill myself.

I had struggled with university. I didn’t know any other people who were deaf, and I didn’t identify with any deaf people. No one understood what I had been going through. I was too anxious and afraid to tell people how difficult it was.

At that point, closed captioning in Australia wasn’t that widespread, so I was cut off from even little things like watching TV, or hiring VHS’s or going to the cinema. I remember very clearly coming out of a cinema with all my girlfriends, and realising I hadn’t understood most of the movie, and so I couldn’t join in with their conversation afterwards. It was a devastating feeling sitting quietly trying to follow the conversation around me, and not knowing what they were talking about.

I couldn’t afford decent hearing aids. They are so expensive, and being a university student at the time meant I had very little money.

Another issue was uni, where group work and lectures and tutorials were so hard for me to deal with, because I was struggling to hear what was going on. Going into uni every day was stressful like you wouldn’t believe. I remember one tutorial where I was trying my hardest to lip-read everyone – the lecturer, and the students as they made comments. Usually I was silent in these classes, as I wasnt quite sure who was saying what. But one day I really thought I had a relevent and interesting comment to make about a topic we were discussing. So I put my hand up, said my bit, and there was silence. The lecturer looked at me in a funny way, and said: “I just said that.”

I was so embarrassed. I never made another comment or participated in that class again.

These are the awful parts of deafness. It’s a lonely thing to deal with. I wouldn’t wish it on anyone.

It got to the point where I was sure I was going to be dependent on my family for the rest of my life. I mean how could I get any well-paying job being as deaf as I was? How would I ever meet a partner? I didn’t feel like I could relax even in the presence of friends because I was always struggling to hear them, so life was just one big constant source of stress.

I was only happy when alone.

The worst thing was, I knew life hadn’t even really begun. I was 21! I remember thinking: “This is not even the beginning. Life is just going to get harder.”

The way I felt, life was already unbearable… And it was about to get a lot harder.

The night I considered suicide, I remember so clearly.

I’d had a particularly bad night at uni, had a fight with my mum, had almost missed the bus home, had a terrible, awkward conversation with a friend of mine – it was late at night, and as I walked through the darkened Sydney streets towards my house, I said to myself: “That is it. I can’t take it anymore.”

I made the decision then and there that I would kill myself, and that it needed to be that night.

The most enduring memory of that moment is how time suddenly stood still. All I can remember was the sense of calm that came over me. My breathing, my footsteps on the pavement, the bright clear moon high above me, the darkened, damp city streets, the street lights. Everything became acutely clear and still. There was a heavy, calm feeling in my chest, the first time that I had ever felt the jittery feeling leaving my heart and stomach.

That was what frightened me the most. How very calm I was. I was so detached, so rational. It was like a relief.

I realised that this was the biggest decision I had ever made in my life, and there was some strange comfort in having taken control back in my life – I started rationally thinking it through. What were the pros and cons of dying. How would I do it. Was there anything that I thought might improve to stop me from doing it.

I walked and walked the dark streets, and thought long and hard.

As I went through the pros and cons, the thing that caused me to pause was that I didn’t know what happened after death, and therefore, I couldn’t prove that what I was experiencing now would end when I died. If it didn’t end, would I be doomed to be stuck in this eternal moment?

I also knew my mum would be devastated.

Finally I came to a decision. It was a feeling I wanted to end, not my life per se. So I said to myself: “No. Death is not the answer. I will not do it. I will find another way to end this feeling. ”

I walked all the way back to the apartment I shared with my mum, in that calm, still, transcendent state. I realised how close I had come. I walked upstairs, sat down at my desk, wrote my mum a letter telling her what I’d planned on doing, and how I had decided not too, but that I would need help. I then went to bed.

I slept, but it wasn’t like any sleep I have had before. I closed my eyes, and lay in one position all night, neatly under the covers, unmoving until the sun came up. It seemed the night was over in a few seconds. I opened my eyes to find my mum standing over me, looking down at me with stillness in her eyes, holding the letter.

She didn’t look upset or anything. And I remember her saying, I will help you. And I got up, we went and had a cup of tea in the kitchen, and talked. And I knew then that everything was going to be alright.

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

I think this is amazing.

I got an email from the mum of one of the students that I mentor – Dan’s mum, Clare – and I really wanted to quote what she said, it made me feel so proud:

Dan has some big news which we are so very proud of. Today he was chosen as a School Prefect for Year 12! I’m sure the mentoring experience helped to give him the confidence to apply for a leadership position but I am gobsmacked that he was one of the few chosen out of so many hearing students… It’s just such an amazing achievement.

Now, I have just received the Hear For You email update & discovered that Dan’s not the only one… Adrian also has become a Prefect.

How wonderful is that! Congratulations & thank you so much for encouraging our kids to believe in themselves.

You might remember another blog post I made a few weeks ago (in fact – the day after my surgery!) about Adrian becoming a prefect!?

Well, it just blows me away that two of the kids in my group have become prefects – that is, student leaders at their schools – it’s really an achievement on their behalf.

Well done guys!

And to celebrate, I am going to post some pictures of us during the mentoring program workshop a few months ago.

Adrian and Bella, listening attentively (I hope!) in our Year 11 and 12s workshop. Well if they were bored, they didn't show it. HAHA

Adrian and Bella, listening attentively (I hope!) in our Year 11 and 12s workshop. Well if they were bored, they didn't show it. HAHA

If you would like to know more about the mentoring program, visit the Hear For You website. We are all volunteers, and it’s a non-profit organisation, so we really do it out of pure passion!

Dan Harris during one of our workshops. Congratulations on becoming prefect Dan!

Dan Harris during one of our workshops. Congratulations on becoming prefect Dan!

Thanks to The Cochlear Foundation which has already given us much needed support to keep the program up and running.

We realise the need to continue raising money will be ongoing, so if you have a fundraising idea that could help us keep the program running – please contact Olivia Andersen at info@hearforyou.com.au.

On another note, (and something we should contemplate doing to raise funds!) if you wanted to support someone doing something good for kids with a hearing loss, a mum of a boy with a cochlear implant is doing a Fun Run for The Shepherd Centre. You can donate to help Fiona raise money for this very important not-for-profit organisation which teaches hearing impaired children to talk.

http://www.everydayhero.com.au/donation_here

Dan, Adrian and Bella all working hard - geez, we're task masters aren't we! Dave and I usually work them to the ground in every workshop. Obviously we are doing something right. Just kidding!

Dan, Adrian and Bella all working hard - geez, we're task masters aren't we! Dave and I usually work them to the ground in every workshop. (Just kidding! Obviously we are doing something right, eh?)

That’s all from me – over and out.

Oh, wait, I should probably tell you that I went for my second mapping session this morning. It went really well. I did a ‘spur-of-the-moment’ sentence recognition test with Rachel – and … I got 100 per cent!

Wow.

I will be doing the full and totally official test in two weeks, so then we will really see if I am doing as well as it appears.

But for now, I am pretty happy!

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