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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Ben and I flew to Perth last month to attend the Hear For You mentoring program for deaf kids in Western Australia.

It’s a 5 hour flight from Sydney to Perth – I normally hate flying long flights because I can’t hear the announcements (freak out when pilot says anything, think we’re going to crash); can’t watch TV (no captions); can’t listen to the radio (I’m deaf remember); can’t read a newspaper (too big for economy!); and get bored of my book after 3 hours of reading.

So had readied myself for torture.

View out of the aeroplane, flying over Australia

I am a nervous flyer. All the captain has to do is murmur "It's a beautiful day outside, and we're 20 minutes from Sydney." and because I can never quite hear clearly what the announcements say, I'll freak out, thinking "What did he say?? Did he say we are going to crash??!! Oh my god, we're all going to die!" And then wonder why everyone else starts reading the newspaper and ordering beer. Delightful.

We were flying Virgin Blue which is budget, so you have to pay to watch TV if you want it. After we settled in, and took off, they made an announcement that the credit card payment machines attached to the back of the headrests were broken, so they were going to give everyone free TV for the whole flight.

Everyone whooped and cheered, except me, because I thought I wasn’t going to be able to hear anything, so would be left out yet again.

But then I thought, geez, if it’s 5 hours of free TV and movies, I’m going to have a go. I’ll just watch the pictures if I have to – that will be better than just being bored out of my mind.

I held up the headphones to my hearing aid and cochlear implant and tried to follow the TV – I could hear it, but it was so static-ey and unclear, it was really disappointing. On a whim, I decided to try the ‘t-switch’ on both hearing aid and cochlear implant, which shuts out all the background noise, and only picks up the radio signals coming from TV. You have to have special headphones for that, so I didn’t think the Virgin ones would work.

But surprise! They had an operational telecoil built in! No notification anywhere, those stupid dolts. It turned out even Virgin Blue themselves didn’t know their flipping ear phones were built in with telecoil adaptability. Pathetic.

Holding the ear bud up to my ear, suddenly I could hear the audio quite clearly! I turned to Ben going “I can hear it! I can hear it!”

Kate with headphones wrapped up in scarf

Wrapping my scraf around my head I managed to get the ear bud close enough to the cochlear implant microphone to be able to hear the audio for the TV/movies on the Virgin Blue flight. I sat like this for 5 hours from Perth to Sydney.

Small obstacle was the fact that the headphones provided were ear-bud types. Now that is difficult for cochlear implantees, since the microphone for picking up sound is behind your ear, not in it!

Ben said: “Why don’t you try sticking it to your microphone?” and I’m like “With what??”

In the end we wrapped a scarf around my head, and I sat like that for the whole 5 hours, and was able to watch TV and hear it perfectly.

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.

Got an interesting comment from someone who’s read my blog:

I am glad you are purporting success with the device, and are such an active advocate.  Indeed your story is miraculous compared to the ones I have come across (numbness, tinnitus, excruciating pain from hair, white noise).  So I am wandering if you are another version of the ‘cochlear volunteers’ distributing erroneous information for a kickback your readers are not informed of.  I guess if you publish this and an accurate answer, I need not be suspicious and outraged by the ’social networking’ propoganda cochlear will go to maximise their profits.
Ruth

And I think it’s a really valid comment.

I was extremely suspicious of anyone that told me a cochlear implant was good before I had one, and for good reason. It’s just hard to believe how it could be as good as they say it is. And you read all these blogs, and talk to all these people, and every single person has a different experience.

I decided to get an implant after I saw a deaf woman I know who had two cochlear implants talking on the phone. That’s when I thought, oh well, it might work – and if it doesn’t, I havent lost anything.

After I was booked in for this surgery, I started this blog because I thought everyone would think that an implant was a miracle cure, and think I would be ‘fixed’ once I had it, and I knew it wasn’t going to be like that. I wanted my friends and family to know the truth. ‘Course the truth turned out to be pretty good for me.  But I didn’t know that was what it was going to be like.

Perhaps my optimism about the implant has come from the fact that I really didn’t expect it to be that good.

My only expectation was really that it would  help with my lip-reading. And I knew that it might not even do that. So I was realistic.

My wish was that I wouldn’t have to lip-read, but I figured that was a wish only.

So, the bad parts of my experience are few… I was having dinner with friends the other night in a pub in Perth. We were discussing each other’s cochlear implants (there were three of us there who had just recently had one in the past year.)

We were talking about the horror stories, and I mentioned that I freaked out the day after my surgery when I leant forward and this rusty coloured fluid came out my nose! Thought my brain was melting! But it was only a few drops, and then it stopped, so I figured that I was ok. I forgot to put that in the blog, but I guess you could call that a ‘bad’ or scary part of the surgery. Actually, that sounds lame. It was not really blog mention worthy.

So, what other things suck about cochlear implants? because I really have been too complimentary to them, haven’t I?

Well. let me count the ways:

  • I hate the way it feels on my head, both the processor and the internal bit. But it’s worth it to be able to hear ok, and I figure I’ll get used to it. Hey, I’m an eternal optimist. But I must say, I wake up in the middle of the night sometimes with my ear feeling a bit numb, and thinking ‘oh god, I have metal in my head’. That is a bit yuck.
  • It’s a stupid design. Every time I want to change a program, it takes a few seconds to press.
  • I worry about the bit inside my head breaking. If it breaks, I am stuffed, because getting a replacement internal bit is not guaranteed to work as well as the first one, because removing the implant damages in the inner structure of the ear, i.e. the cochlea. So that is something that is in the back of my mind a lot – I might lose all this at any time.
  • You can’t do contact sports any more after this. That kind of sucks, even though I dont play contact sports of any kind – I just dont like being told “You cant do this any more because …” you know?
  • It kind of sucks how many batteries it takes – I spend $1 every day on a battery, that’s $365 per year. They are fiddly little things too. When I am 100 years old it’s going to suck changing those things.
  • Sometimes I can hear on the phone and other times I can’t. Sometimes I can hear TV, other times I can’t. It’s not consistent.

As for Cochlear Ltd being the best cochlear implant company, I don’t know about that anymore. I mainly support them because they are Australian, and pretty reliable.

From the research I have done, it sounds like Med-El would be a good cochlear implant – it apparently has a slimmer electrode, which goes deeper into the cochlea, and gives you more spectrum of sound, and therefore makes speech and sound more natural.

I am seriously considering getting a Med-El for my second implant.

But who knows!

So there you go… And what’s the answer to the million dollar question?

Is the cochlear implant really that good? Well, the answer is …. for some, yes. For others, no.  It’s as simple as that.

Everyone’s different, and that is probably the most frustrating thing about a cochlear implant ever. There is absolutely no guarantee about how it’s going to work.

I was brave enough to deal with the possible consequences, as I was well aware of the possible outcomes – which was that it might not help me at all.

It’s scary.

And that’s why whenever you meet someone who’s had a cochlear implant, or the parent of a child with an implant (because they’ve had to make the same decision!) you should think about the difficult decision they made, and no matter what outcome – give them a pat them on the back and say: “Respect to you for being brave, mate.”

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.

OK, now for our weekly update on what I can hear now! Yaaaay.

Today I made a phone call to someone I didn’t know.

That’s a big thing, because it can be kind of hard hearing the voice of an unfamiliar person on the phone.

I have been talking to Ben and mum on the phone heaps now since the implant (wow!) and unfortunately, I have the phone bills to prove it.

So, today, I decided to take the leap, and try and call someone I didnt know.

Perfect moment came up when I realised that it was tax-time.

Considering I got audited last year by the tax department because I tried claiming my hearing aids and hearing aid batteries as work expenses, I decided I should probably get someone official to do it this time, just in case.

So, I called the local tax accountants near my work.

I had to prepare myself mentally. Making a phone call like this can freak me out!

So, I got organised, went into the ‘Quiet Room’ at my office, took a few crazy breaths, felt ridiculous, and then dialled. A woman answered:

“Hello? ”

Clear as a bell. I wondered briefly if I should tell her that she was talking to a profoundly deaf person. But no – I decided it would freak her out… Like walking up to someone, in full view, and shouting “I am invisible!”

And besides! I could understand what she was saying. And so we had a normal phone conversation.

It was a little bit unclear in parts – I mean, she was talking normally, not clear and slower than normal, like my family knows how to speak to me – she had no idea she was talking to a profoundly deaf robot person!

So, I was able to talk to her, book an appointment, and also check what documents I needed to bring. That was pretty awesome. But also bizarre.

I mean, who hangs up the phone after talking to their local tax accountant all flushed and excited!? Geez, I hope I never get used to using the phone if it’s this fun to use each time. A bit nerve wracking, but totally worth it.

Another cool experience was the gym.

Now, anyone with a significant hearing loss like mine knows that when you go to a gym class, like say, pilates or yoga (as I am wont to d0), that you need to position yourself in such a way that people are surrounding you – so you can copy people from all angles as you do your moves.

Because, obviously, when you are deaf you can’t hear a word the instructor is saying, and you can’t always see them from your contorted positions!

After years of yoga classes, I have become a master of copying moves of everyone around me without them knowing, and I can even can pre-determine what sort of move a person is about to make, just by the way they are breathing. I try not to look like I am watching my fellow classmates too intently, because I guess it would freak anyone out if they realised they were being stared at doing the ‘Downward Dog’.

Anyway, so I was at one of my regular classes, and I felt particularly rested and relaxed during the class for some reason. I hadn’t realised it, but I was actually hearing the instructor saying: “Breathe in. Breathe out, and hold for 4, 3, 2, 1… And relax…”

I couldn’t believe it.

I sat bolt up-right in the class while everyone else was lying down crouched in some bizarre lotus position, heads down, arses up, and arms bent… I double-checked. Yep. The instructor had her head bent down too, still speaking, and I was hearing every word of it.  

I lay back down in my contorted position, and just grinned like a madman.

Yoga gym junkie gibberish never sounded so good.

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