Resources

National Relay Service
http://www.relayservice.com.au/
This is a great service whereby you can use text chat on your computer to make phone calls. The relay officer does the talking for you! Several different forms, depends how you communicate, whether you can speak but not hear or vice-versa. I've have found it a life-saver. Stay tuned - there may be a FaceBook-based user support group coming...

Cochlear Implant
An Australian success story. The first implant was performed on the 1st of August 1978. [I hope you're sitting down] 30 years to the day after I went 100% deaf! So, like, it was the last day of the 30th year. That is freaky!
Wikipedia page

Sydney Cochlear Implant Centre
http://www.scic.nsw.gov.au/

Cochlear Implant - the animated movie

http://au.youtube.com/Cochlearltd

Deaf Village
Deaf websites and blogs from all over the world
http://deafvillage.com/

If you're interested in AusLan check this site. Kind of like a dictionary, it shows the hand gestures. Click the links!
http://www.auslan.org.au/

Deafness Forum of Australia
Resources, links elsewhere

Australian Tinnitus Association
http://www.tinnitus.asn.au/

Hearing Awareness Week NSW page
23 August 2008

Cochlear Awareness Network
http://www.c-a-network.com

CICADA [Cochlear Implant Club and Advisory Association]
http://www.cicada.org.au/

YouTube Switch-On videos
[link]

Jennie's Story

[link]


Movies - Captioned cinemas
http://www.yourlocalcinema.com.au/

--

Rights and Complaints
Australian Human Right Commission
http://www.humanrights.gov.au/
Make a complaint to the AHRC
http://www.humanrights.gov.au/complaints_information/lodging.html

Media Access
http://www.mediaaccess.org.au/
Captions [and complaints]
link

More cinemas captioned

As of 4 May 2009 there are more cinemas with captioned screening sessions
<http://www.yourlocalcinema.com.au/>

This brings the captioned cinemas in Sydney to a whopping [wait for it], 3!
Come on Dendy and Palace and mega Hoyts where the hell are you?!

The Results are In Again

Today was my six month tune-up. Yes, six months - I can hardly believe it either.
So my 'exemplary' performance
Sentences, no sound -100%
Sentences, with sound - 55%
Words - 56% [average is 30%]

So, next tune-up in six more months and that's my first cochlear anniversary.

Posted with LifeCast

First Cochlear-Equipped Plane Trip

I went to Melbourne to visit me bruvva. I was able to negotiate security after check-in on the web [no luggage, the only way to fly]

And, while there I was able to get around by fantastic tram. Several trips per day. Why did Sydney EVER get rid of trams?

My favourite café - Brunetti in Carlton [tram 1 from the city]

A successful trip.

Posted with LifeCast

The Song - Announcement

By the way...
No correspondence will be entered into regarding the award of any prizes, other than passing on congratulations to the winner. Comment below if you like.

So, there were 35 entries.
There were many songs I have never heard of - hopefully I will hear and recognise them later...
I'd like to be able to include them but these are out of contention.

There were songs I know which would be too jangly. Thing is, with this implant business, I hear differently to you natural-hearing people.

The killer songs were [based on my memory]
Hallelujah, nominated by a few people, a few anonymous. This is such a beautiful song and there is a version by a woman singer [not kd lang] that is in my mind but I don't know who she is
Moon River by Audrey Hepburn [Breakfast at Tiffany's soundtrack]. Such a naive and charming rendition.
Over the Rainbow a terrific song
God Only Knows - Beach Boys
Ave Maria - a real religious song. Difficult to sing and give the song its due.

Artists
Nick Cave had a large following but he leaves me cold. Maybe when I can hear them...
TV themes - you folks know my failings. Not right for this exercise I'm afraid.
Frank Zappa - you sure about that?
Beatles - not quite right for this

OK the winner is...
Hallelujah, a Leonard Cohen song, popularised by Jeff Buckley and also sung by that anonymous woman [one day], and loads of others.
Nominated by AM of the Eastern Suburbs
Congratulations, AM! [Crowd roaring]

Thanx to everyone who nominated songs - it has been a very interesting exercise.

2 March

Went to the CochDoc today - starting the process for implant number 2.
Before the implant can proceed I need a procedure called a "Blind Sac Procedure". 

Since treatment in 2002 [radio and chemotherapy] the structures within my ears have been affected - one outcome is bone necrosis. The risk with the necrosis is that infection will be able to take hold. The Blind Sac procedure seals the area and makes it less-susceptible to infection.
The procedure will happen in August.

Then, once all that has had a chance to recover we'll be investigating the next cochlear implant...

Call for Nominations - the song

Update 26 February - First - I am NOT giving in! It's now three months since the switch-on.
The adoption of the implant is continuing and so far the results have been, well, spectacular. Music remains a problem and obviously a problem for the longer term, maybe after #2 listening will be easier - at the moment all sound is arriving in [what passes for] my brain all at once and with little differentiation. The speech processor is just that, it is geared to speech primarily.
So - I'm going to award the prize for the music nomination, based on memory rather than realistic hearing [nothing would pass in that case]. Now is the time for last-minute nominations. You have until the end of February to get them in either via email, or use the form further down the page. Remember - it'll have to be something memorable, post-2000 and melodic.

Update 26 November - There are now 32 nominations, hearing is not quite right to announce a winner [they'd all fail with this jangly hearing] so keep 'em coming. Remember melody, harmony, pre-2000 is possible. How young do you think I am? The boyish good looks fooled you!

Update 23 November - I thought that I might have a better appreciation of music. It's certainly better than before tune-up#1 but still jangly. Hopefully with time and despite the mono-ness music will become meaningful again.

Update 21 November - As a result of the first tune-up I will start listening to familiar music. This will assist in re-training me to hear music better. Then I can better judge the nominations. So keep those nominations rolling in!

Update 13 November - The Call for Nominations song poll is still open and will remain so until I think I'm ready to attempt to hear music - thats a big step!

So get your entries in, as many as you like. There is a prize!

[Hint - I'm looking for something melodic and harmonic, something I might recognise. I have a few ideas, but I welcome any suggestion]

Notes at the bottom of this page

Song title	The nominator said...	I said
All You Need is Love	LG suggested it	The Beatles, I can think of a lot of Beatles songs which could be contenders for the ‘The Song’ I’m less-inclined to the Paul McCartney end of the catalog however
any Neil Young songs	You can blame his bad singing	I don’t find NY’s songs terribly melodic or harmonic, even though I did listen to Harvest all those years ago
Anything by The Pixies	The Pixies were the band Kurt Cobain tried to imitate when he wrote Nirvana's best known song, Smells Like Teen Spirit. Why is this good for Couani? Because The Pixies pioneered the quiet-loud-quiet-loud verse/chorus template that is the basis for a lot of alternative rock since the late ’80s. Thus a song such as Monkey Gone To Heaven or Gigantic will test his range of hearing. It will also make him rock like a bastard. Turn it up, JC. Turn it up loud.	Unknown to me – I’ll have to hear them
Ave Maria		Best sung by a single female voice with minimal accompaniment. Another song to die for.
Birds in backyards-Top 40 bird songs	For the memory to kick in	I look forward to hearing as many birds as I can, including the mascot. Not really music as required by the poll, but a good suggestion
Bitter Sweet Symphony The Verve		I heard this song on too many ads or something for it to be a contender. Didn’t like the lead vocal.
Blessed Essence- Children	It is	Unknown to me – I’ll have to hear them
Children (Dream Version) - 7:06 - Robert Miles - Dreamland	Via my friend J.: "It starts off with rain in a forest and then moves onto the piano before slowly going into the beginning of the song. Build up is amazing."	Unknown to me – I’ll have to hear them
Eva Cassidy's over the Rainbow	Tony here mate .. late as usual. Try Eva she's absolutely wonderful and that's coming from a guy who doesn't really like vocalists	Unknown to me – I’ll have to hear them
Every Breath You Take by The Police	Hit of the 80s which I took a liking to because my son was a great fan of The Police band.	Nominated twice. Do love this song – whether an appropriate test of hearing…
Eye of the Tiger, Survivor	Oh, who cares what happened since 2000. The Best of Britney is her willingness to appear nude, not her music. The Day the Music Died was sometime just after 1990. Nothing's been good since...	Are you kidding? This was suggested by at least two respondents!
Fallen, Sarah McLachlan	cos it is beautiful and describes where you have been, but is also filled with positive energy for the future, enjoy	Unknown to me – I’ll have to hear them
Good Vibrations, Beach Boys	The cochlear relies on them	Excellent choice, and God Only Knows, one of my favourite songs. Contenders
hallelujah, jeff buckley	certainly recognisable, definitely melodic, and the bloke has a very good vocal range, could be too high in parts for you to handle but maybe not...	With the right singer, a song to die for. I wish I knew who sang the version which made me melt when I heard it
Hawaii 5-0 theme	To distinguish ringtones	I’ve heard quite enough of Steve’s Theme song in tinnitus. Latest version played on a banjo – think about it.
Henryk Goreckis Symphony no 3	Hauntingly beautiful	Unknown to me – I’ll have to hear them
Hey Jude - The Beetles	Any of the Beetles songs would be good to listen to. You dont want anything too head banging when you start out. Best if you have lyrics also so you can follow as you listen. Even do some from YouTube.	Apparently written by John Lennon as "Hey Jules" and altered by PMcC. A good song, although the na, na, na, na bizzo gets up my nose.
INTO MY ARMS, nICK CAVE AND THE BAD SEEDS	JUST BOOOOOTIFUL	Agreed - another song to die for
John Denver Children of the Universe	I just captioned this song today, so you can follow along as you listen. The lyrics are beautiful and John Denver has an amazing voice. <http://deafmomworld.com/john-denver-song-makes-me-think-of-deafhard-of-hearing-children/>	I don't know this song but John Denver could certainly sing a mean song. Singable usually - have to hear it.
Moon River Audrey Hepburn	Moon river with a Lisa Simpson voice could be interesting.	A song which rips your guts out. Pure, simple
OLD MAN, NEIL yOUNG	YA JUST GOTTA DO IT FOR NOSTALGIA'S SAKE	What is it with Neil Young!?
Praise You Fatboy slim	"I have to celebrate you baby, I have to praise you like I should".....	Where’s the melody/harmony? Not the right kind of song
RockLobster B52s	cant get those BeeHive dos out of my head fun, fun, fun	Good and few more B52s tracks are contenders [Love Shack has great harmonies]
Sadness Prt1	Blessed Essence	Unknown to me – I’ll have to hear them
SiX Million Dollar Man theme	Cause you're bionic	As far as I can recall, was this actually music?
Sound of Silence - Simon & Garfunkle	Its quite obvious really .....	Ahh the irony, but and excellent choice for harmonies and melody. Singable
Spanish Flea - Herb Alpert and the Tijuana Brass	You know why	Sadly enough this is a great suggestion and a few others of Herbs. Cheesy but good!
the ship song, nick cave	all time beautiful, melodic song ...just listen to it.. deaf or not .. you'll know what I mean.........	Unknown to me – I’ll have to hear them
The Wonder of You	For practice	Elvis – there’s a few Elvis songs which could easily be contenders
Thievery Corporation The Richest Man In BabyloN-	GOOD SOLID BASS	Unknown to me – I’ll have to hear them
this is the end , the doors	one of those never ending all time greats from way before	Agreed - there are few Doors songs which capture the moment…
Us & Them	Pink Ployd. No reason in particular, I just love the song!	Pink Floyd DsotM. Haven’t heard it for a while but I think there might be more melodic tracks.
Valley Girl and catholic girls Frank Zappa	With a tongue like a cow she can make you go Wow!	Unfortunately known to me. Where’s the melody?
walk on the wild side, lou reed	tres kool....feels goood	I saw Lou when he came to Sydney during the Walk on the Wild Side days. I think I can’t go along with this nomination because of that
Yesterday - The Beetles	Because it is easy listening and you can try and listen to the words as well as the music.	Always been a good song, nice easy tune

Higgledy-Piggledy birds in Byron

OK you can stop waiting, or pestering me for the latest cinematic extravaganza.
Forget the Oscars, Heath Who?!

Presenting Butcher Birds in Byron Bay, the movie. Don't wait for the book.

Trip to Byron Bay

13 February
We arrived in Woolgoolga mid afternoon and noticed that there were a lot of rainbow lorikeets around. At sunset there were 1000s of them. And there were some black cockatoos too. And my friends the butcher birds but not so many of them. And kookaburras eating pizza.

14 February
We drove to Byron along the coast - raining most of the way. Booked into the Byron cabin about 3pm. Byron town is overrun by Queenslanders. Must be a public holiday in QLD we think.
Later a butcher bird came by to see what was happening in our cabin...

15 February
We went to Uki in the morning for the 'market'
Later, in Byron, I went into the ocean for the first time since I have had hearing devices - and certainly the first time since I went 100% deaf. The sea bed was not flat and the currents were strong. I found it had to walk into the surf [balance].
At least we had sun after lots of rain over the weekend.

17 February
Another beach outing.
There was no rain, but cloud cover. Tried a different beach and was able to catch a wave!
Heard the butcher birds in the morning and during the day. Beautiful

18 February
Beautiful Tallow beach, too many currents to stand confidently in the water, but splashed around a bit. The roar of the surf was deafening until I took the external bit off. Met a friend for lunch in Mullumbimby. Nice town, nice old weatherboard houses. I hope suburbia doesn't invade too soon!

I give up here's some pics

Byron Trip 02 2009

On the way back

Tamworth - home of the bogan

This Blog is Viewed around the World

I'll add to this list as I see them.
Down on the right hand side of this blog there's a panel [Feedjit] which shows which country the audience comes from and which page they came from. Many come from deafvillage.com, a reciprocal linked site in the USofA. The little flag denotes the country. I'm amazed at the range of different countries. Lots of websurfers out there.

Here's some I've seen

Australia of course
Bulgaria
Canada
Czech Republic
Finland
Greece
Hong Kong [China]
India
Indonesia
Iran
Pakistan
Phillipines
Russia
Taiwan
Turkey
United States

notable exceptions
Switzerland

Facilities available

Here's a list of known facilities for those using electronic devices to enhance their hearing experience.
Those listed as bad will be written to, so they may correct their non-provision of appropriate services.

Those with telecoil devices [hearing aids, cochlear implants] might care to make a positive or negative nomination by commenting below [or email me]. Give your nomination a rating. Entries will be added to the table.

Rating	Location	Notes
Excellent	Museum of Sydney, AGL Theatre	Check with staff first
Good	Palace Cinema Norton St, Leichhardt	Ask for the telecoil to be turned on
Good	Better Hearing Aust [NSW] Concord	Excellent use of telecoil public address system - the PA is better than for natural hearing people!
Bad	Dendy Newtown King St	Asked for the telecoil to be turned-on - Apparently out of action

There are three ratings [final arbiter - me]
Excellent
When the loop works as it should - as if you're hearing the speaker
Good
Applies when the service provided works for those who can't hear properly

Bad
Applies when there are no facilities or service is non-existant. Letters will be sent.

Ugly
Applies when the experience is more than negative, like if a service is offered, for a fee or disdain is shown toward those not suitable for their precious system. Luckily not experienced yet. These will be reported to relevant authorities

3 month tune-up

Today it was time for the three month tune-up.
More personalisation of the settings [there are four modes plus telecoil only], refining the settings I do have to suit my hearing experience.

I also underwent the Speech Recognition test in the soundproof booth.
It consisted of four tests
Individual words
Sentences
Sentences with noise overlay [in which a recorded voice speaks sentences with a raucous noise playing at the same time]

I found that letters such as F and S, M and N, and D and T were the trouble areas but I think that is to be expected. Overall results were good with 60% above average in the 'individual words' test.

Next scheduled tune-up is May 2009.

31/01/09 - 31/07/08 = 6mths

Yep it's six months since that fateful day when I awoke totally deaf.
Who'd have thought then that I'd have the hearing I have now? Who'd have thought I'd be going to Speech-Reading at Concord [not Burwood]? Who'd have thought I'd meet the people I've met?

Don't forget to check the hearing diary for up-to-the-minute [well, fortnight] reports of the latest hearing spectaculars.

Now, how to celebrate the semi-anniversary?
Crack a half-bottle of champagne or other sparkling beverage over the speech processor? Too messy
Lottery tickets? Can you buy half a lottery ticket?
Maybe go and have a look at half an iPhone [front half, more interesting] in anticipation of the day…

Make a suggestion!

Tune-up #4

So I have had re-mapping [I call them tune-ups] number 4 on the 8th January. The settings I have settled onto are now arranged thusly

Setting	Purpose	Note
1	General Purpose	This is the setting that is on when I turn on the device. I use it for general day-to-day listening.
2	General + Telecoil	This is the same as #1 telecoil is on as well. This allows me to hear something on the phone but also in the nearby environment. So I can speak to someone on the phone and someone nearby too.
3	TV	This is meant for watching television with but I find TV noisy and annoying. I prefer subtitles/captions I think.
4	Noisy	This one is for noisy situations. However the situations I find myself in are SO noisy I asked Monica to turn it down. It's not an antidote for aeroplanes and traffic
Telecoil	Phone	This setting is for standard [not mobiles or cordless] and at the movies. Theoretically it's able to be used at banks and other counters where the coil is in use but I ain't found none.

Higgledy-Piggledy Birds movie

After my tune-up of 8 January 2009 [Happy Nude Year by the way] I thought "maybe I can hear them". I went to the park in the early-ish morning, a couple of times but couldn't tell if they were there or not.
Then I thought I'd heard the mascot Butcher-birds. I grabbed the camera and went scurrying up to the park to see if I could hear them, see them and record them. Yes is the answer and the result appears below. All made on a Mac.
The background is a bit noisy but when they sing they sing it out LOUD!! Be patient and you can see one of their silhouettes - they're difficult to see, let alone photograph! It's a bit shaky - I'll use a tripod next time. There were at least two having a good ol' sing-song.
I hope you enjoy it.

Third tune-up Wednesday

Back to Gladesville SCIC I had the third tune-up yesterday.
More of the same, twiddling with knobs and sparks flying out the back of the computer. Monica set more settings and the hearing is a bit clearer if that's possible.
I also tried out a few gadgets. I don't know what's wrong with my phone - whenever I try a new bluetooth device the humming is unbearable!
We shall plug-on until a good combination is found...

I hear Higgledy-Piggledy Birds

Don't get too excited.
[Higgledy-piggledy or "butcher bird"s are one of the mascots of this blog]
I was walking thru the park yesterday and I heard the familiar refrain - 'higgledy-piggledy … higgledy-piggledy'
It sounded like a man with a very hoarse voice saying the phrase. Nevertheless, I heard the rhythm of the phrase - I'll have to hang around the park a bit more and get the pitch of what they're saying.
Hopefully it won't be raining, then I won't get reported as "some old guy hanging 'round the park in a raincoat"

Tune-up, the second

Well after three days using the setting from the first tune-up, the second tune-up came around and off we went again.

As I write this it is clearer - I can hear someone in the other room and it isn't tinnitus!!

Amazing.

Now I'm looking into health insurance so that I can get a second implant to re-activate hearing in the left ear. It's been out of action for over a year, so require a bit more training than the right one. But if the results are as good, or even not as good as the right one, I kind of have to do it.

Imagine what it's like in a mono world - sometimes I cant hear from which direction sound is coming. I can hear it but look the other way.

Sometimes it's like there's a wall running along the middle of me head - I can hear stuff on the right but everything on the left is muffled/blank.

So we start along the path to number two...

A remarkable result!

Today, Friday 21 Nov was the first tune-up session for the implant.

Following on from 'Switch-on' settings were tweaked and settings were set. The diagram on the computer showed that even in the last week my ear has accepted and adopted the implant and is improving.

The Audiologist later asked me to repeat a set of phrases, which apparently is a test for 4 or 5 weeks after 'Switch-on'. I was able to repeat the phrases word-perfect in all but a few cases.
A remarkable result!

Later in the day, after more practice, I found the hearing different. It is more trebley. TV is very noisy. I was able to speak on the phone. It's still fuzzy but I'm able to discern what my father said. No mean feat!

How is this done?

You may be wondering what wondrous technologies are at work, to produce this wonderful blog.

Wonder no more.

Here's a bit of shameless self-promotion.

These are the tools I use to put these pages together

Blogger

This is where it all comes together. 

I have a few different blogs - this one is "Curse of Silence", my experience of cochlearisation.

I write the text you read on the pages, make links to other pages, links to photos and movies and documents. It really enables anyone in the world to have their say, no matter how trivial.

The images and movies and Calendar don't live within the blog - they are outside and brought in by "embedding" them using hyperlinks.

Macs or PCs [Firefox works better for editing]

Picasa

The images you see on the pages are stored at Picasa. It's a web photo album. I took the photographs with my digital camera [or I could scan photographs, or have photographs saved to a CD]. Once I had the images, they were uploaded [saved] to the Picasa web album.

PC users can download the Picasa program which works like iPhoto below.

Google Docs

When you complete one of the polls or use the 'Contact me directly' page you're filling in a row in a shared spreadsheet or database, in Google Docs. It works just like an Excel spreadsheet, except it's on the web and accessible for your comments directly from the blog page. The system also sends me an email when you send me an entry.

In a different application the spreadsheet might also be shared so that the results we collected would be available as-is, or registered users may have editing privileges as well.

Calendar

I keep a Calendar of my up-coming appointments. One part of it I've devoted to this cochlear process - if you're interested, why not share it with you? That's what I've done. I've shared the cochlear calendar with you via the blog page by including some code which says "put the upcoming events in to this blog-page" All I had to do was copy/paste it. The Calendar now appears and it's updated without me having to do anything, dynamically - it's always up-to-date.

Find all these web-based programs via the Google page located in your web-browser.

Companion programs

iPhoto

Included with every Mac since 2000-ish. Allows to to download images from the camera and basically edit them. Then upload them directly to Picasa [or Facebook, make websites etc]

iMovie

Included with every Mac since 2000-ish. Get raw footage from the camera, import it to iMovie.

Add titles, and captions [laborious, especially if you're hearing isn't 100%!].

Export to the desktop in this that or the other format.

Makes it very easy if time-consuming.

Now the shameless promotion part.

Got a project like this needs doing?

Need to know how to get the pics of your camera and onto the WWWeb?

Contact me [email best at the moment - phone coming soon!] and lets talk computers.

You've read the blog now SEE THE MOVIE

Here it is
• you'll laugh
• you'll cry
Captioned for those of us with less than perfect hearing
Got something to say? let me know on the Make Contact Directly page

Make Contact directly

The deadline has come and gone and here are the results, put through the Acme magnifying glass. It was nice to see that the most popular entry was "I'm subscribed and hanging on every post". I hope that wasn't just the donkeys voting.
Also the vast majority of respondents were positive - negatives aren't going to vote, let alone read the blog. Boo, hiss on those negatives.

Even so, THANK YOU to all the respondents!

Although the poll has closed feel free to add a comment as time progresses - Google users can do so using their Google username/password. All and Non-Google users can continue to use this Poll page. I will be notified of all messages received in the system.

Results of the Access Poll as of 6pm 14 November

Overall a reasonable result although I wish there were a few more entries

Of the entries received there were
100% positive
• I'm subscribed and hanging on every post - 45.45%
• I might read it I might not - 9.09%

Of all the entries
Standard, selected entries - 54.55%
'Other' Entries - 45.45%

The Call for Nominations song poll is still open and will remain so until I think I'm ready to attempt to hear music - thats a big step!

Pics from the Big Day

Entry to the Sydney Cochlear Implant Centre,
Broadway-musical-style

The before shot, awaiting cochlearisation. Me, not them


Looking over the Audiologist's shoulder, gettin' configured


Appliance installed, being configured still attached to the computer

The Moment of Switch-On - Hearing Monica speak
Father is flabbergasted and he can't even hear her!


Celebratory lunch at the Sydney Rowers'

The News is Good

I can hear!! Yes - today was the day my Cochlear Implant was turned on. I am able to hear

• The Audiologist [Thanx Monica]
  
• partner providing sooth
• parents talking
• traffic as noise
• aeroplanes

It was quite an emotional moment as you may well expect. There will be a movie of the moment of Switch-on. Pics too [coming!]

The audiologist took me, and my entourage, thru the set-up process, direct-connected me up and away we went.
Through the big hearing test, with the "Hear this? - yes" sequence. Then after what seemed like 15-20 minutes she said "OK, ready?" We set up the un-connected Speech Processor and I could hear sound, well noise at first. Monica did a bit more twiddling of settings [that's a technical term], then I could make out what she said. Lip-reading made it a lot easier. And I didn't think I was THAT good at it.

So then we went off for the celebratory lunch at Sydney Rowers' club at Abbotsford - average age was 75, the noise [to me] so loud I contemplated turning off the appliance. But I thought I'd better get used to it - but put it into noise-reduction mode. After an hour of the noise I felt it was making me a bit dizzy but I endured...
After lunch needed some quiet time so headed to the Leichhardt retreat for a quick hibernation.

What happens next

Now comes a season of fine-tuning the devices which make up Cochlear Implant System. Dates in the Calendar. This may mean that the hearing I have now will get better, more usable. It's not as good as natural hearing but it IS better than no hearing.

Further into the future
Is a second implant on the horizon? There behind that swaying palm tree [or is that a volcano?] A second implant depends on the ability to gain hearing, is the existing ear structure capable? The external parts may be once-and-for-all disabled to stop infection and once that settles down a second implant will probably be considered. It may be that I'm just deaf on that side.
We shall see.

PS Dont forget
Nominate a song
Say "I was here" closes this Friday AEST

Calendar

Here's the calendar - see when things are a'happenin'. If you click an entry you can add it to your calendar. How's that for convenient? [Google, iCal, Entourage maybe even Outlook - PC users advise please]

+Even later Change+ ^.-.^

I have received word that we're back on for Wednesday 12 September. Re-mark your calendars/diaries. Put that champagne in the fridge a day earlier!!

Don't forget - poll. You'd forgotten hadn't you?

Contact

Cochlear contacts so far

well Rick has his own entry [Hi Rick] earlier in the blog.

As of now [6 November] I've also met two, maybe three recipients at the speech-reading class [Better Hearing Australia at Concord, mondays] [Hi to all the gang there!!]

Today I also chatted [Skype] with another contact - Felicity in Adelaide. She manages the webpages for the Cochlear Awareness Network. You can read her story on their website. She was deaf for a long time before the implant was recommended and the op done just a few years ago. Her story is very touching, but a real triumph over adversity.

Coming up

I have initiated contact to meet the deaf-from-birth child and father trumpet duo. The go-between has been alerted and contact will be established at some point in the next month or so. Watch the blog!

Now, don't forget to acknowledge your very existence by completing the very quick, very simple, non-spam-generating, non-identity-thieving access poll. How else would I know you're there? I CAN'T HEAR YOU!!

|Late Change| - Date has changed

Yes I received word today that the date for 'Switch-on' is now 13th November at 3pm. So adjust your clocks, diaries, palm devices and iPhones. Make sure they're all aligned.

And have you posted your response in the poll? Takes just a minute, lets me know you're still there, still paying attention. Well you are aren't you. Hello? Anybody...?

I have a lump

Don't Worry!

The lump is the implanted piece behind my ear, which feeds via wire to the piece implanted within my right cochlea. It is the audio processor, sometimes called speech processor.

Recovery from the anaesthetic took about a week and still dealing with the physical damage.

Swelling seems to be all but gone, have a bit of wooziness whenever I need to bend down or walk anywhere. It's like someone else is steering sometimes. I have to lean on a non-movable object to reset sometimes. I've done a minimal bit of work [thanx Gillian] but don't think I can be trusted just yet. 

Still in self-imposed quarantine - have a cold? Stay Away!!

Now I'm looking forward to next Wednesday - 'Switch-on'. The sceptic in me debates how good it'll be with the positive feedback coming from all parties - too much discussion. Let's hope it's as good as it can be! And realistic hearing the result.

Nearly forgot the tinnitus - still there, still entertaining. For the past few days this week I've had an Elvis song [mostly the backing tracks] playing. Over and over. Just about sing along with it, but can't quite hear the words…

Now have you filled out the poll yet? No?

[poll]

Click the link and fill out the very brief form so I know someone's [anyone] been here - be anonymous if you like - no personal details will be recorded.

Sculpture Adjacent to the Pacific

Recovery continues, thanx for asking.

We went on my first real outing on Friday.

Something called "Sculpture by the Sea" - I think "... Adjacent to the Pacific" sounds better. Anyway here's some pics, no particular order.

Loved the bubble off-shore - they should make it a permanent fixture

'ello 'ello, 'ere's a few birds

And the rest of the farmyard friends

The graceful wing never stopped moving, in a light breeze

Sea amenone, nemanone, creatures, in metal

Hardly anyone showed up, and somebody played Scrabble on the cliff

Splendid Isolation

Well here we are again in the isolation tank.

What you been doing today, anything? Me neither.

Been scrabbling a bit, I mean Lexulousing [boo hiss Hasbro!] during this period of convalescence. Bit of reading, a LOT of blogging, what with the Curse, AcmeNews [due any day now], Carcinoma diary [updated for Cochlear]. Poor old MyRecipes is feeling a bit left out! Maybe next week.

So the GP checked the wound yesterday - nice and dry. Little bit of dizziness today. Not so much that the boat is sailing the bounding vein but more like the plane is navigating in a strong headwind. 

And the inevitable lethargy. Went out this morning, just to get out, get the mail, maybe have a cuppa at NortyPlaza or lunch. Had to come back. This operation has been different from others. Longer, so maybe the anaesthetic has taken a greater toll and there's more damage, what with tonsils in the way, bruising.

If the weather picks up tomorrow [Friday, rumoured to be 36C] maybe 'Sculpture by the Sea' maybe see you there! Otherwise might get some pics - material for the next instalment...

Good Night!   

 

Animated movie explains the mechanism

Here is the movie from the Cochlear people.

It explains how the mechanism delivers sound to the brain.

[requires Flash and a fast connection]

Cochlear Ltd YouTube Channel - http://au.youtube.com/user/CochlearLtd

[captions included]

Cochlear Ltd Home page - Cochlear Ltd

Recovery underway

Well it's been almost a week.

Today I have metallic taste - whether this is nerve effect or the fact that my poor tongue was mangled a bit during the operation is a bone of contention.

No more blood from the tonsil, also mangled.

[Was the anaesthetist trying to park his car in there or something?]

Bruised neck.

Swelling seems to be going.

I had a minimal black eye, that's still there.

Wound is nice and dry - haven't been able to wash hair for a week. Good thing it's only 0.5cm long!

The GP will check the state of the wound tomorrow and I expect that the dressing will be removed.

After Switch-on

In the quest for maximum input for the recipient the SCIC people have already scheduled me for a series of appointments, starting with the 'Switch-on', which is just about as ceremonial as one can get!

Only thing missing is a certificate or TShirts [hmmm business opportunity brewing].

They encourage you to have your relatives on-site when the initial activation occurs, and as with so much of the stuff, encourage you to fully-inform [I mean fully] of the activities you're about to undertake.

I can see how the initial Switch-on could be a very emotional time. I'm prepared for the inevitable tears. And I think I won't be the only one bawling my eyes out either. [Should that be neither? Hmm, maybe a double-negative on the 'won't']

Anyway, so we have Switch-on on 12 November as previously-mentioned. That'll be the most emotional part, although I can think of other emotional parts - first hearing of butcher birds, your voice, surf, music, the iPhone [I've yet to hear one ring]. So please excuse any lacrimonious lapses should they occur.

After that, there's appointments set for weeks 1, 2, 4, 8 and 12. The 6 monthly and yearly reviews. Talk about thorough.

So that's the next six months taken care of - tweaking the settings and other SCIC activities, lip-reading, and doing the blog. Who has any more time?!

Sydney Cochlear Implant Centre [SCIC]

Another Date with Destiny

The date for switch-on has been set to 12 November 2008.

On that date I'll be fitted with the external part of the mechanism called the Speech Processor.

And thats just the start of the process of fine-tuning, getting the optimal result for my situation.

I aim to hear you talking, butcher birds singing, TV. It probably won't be normal or immediate but thats the goal.

Before and After Shots

Here is a shot of the rear of my right ear before the surgery. Hair cut especially short for the operation [sorry about the crap weather on Wednesday and Thursday - when I get a short haircut, the weather always turns nasty] 

Straight-on side shot - Nice and neat. I think it will come back to that, with a little bulge behind the ear, if others' experience is anything to go on.

Hi-ho, hi-ho it's off to the Op we go...

Let's see - got the booties, got the sack of gear in the pink bag. Very stylish.

Post-op. I woke up with this pillow attached to the side of me 'ead.

Bit out of it. Slept most of the next day.

Of course it's "the bed number of doom" but not of my choice.

Here's the aftermath. Not too bad a job. should tidy-up quite nicely and with a bit of hair you'll never notice it. There'll be a "hearing-aid" looking device there later, so you'll see that, although hair should cover that too.

Notice the purple dot on my ear-lobe - that means "This one, not the other one..."

New Tinnitus Channels

Update 22 October 2008
I had my Cochlear implant on wednesday.
The tinnitus is still going strong and different. Sometimes softer, sometimes louder, always different.

New channels
• Mens choir [cant quite make out what they're singing]
• Paris ambulance is back after a long absence
• Men speaking in the next room
• New musical soundtrack
• Sound of outboard motor, or motorbike engine

Date with Destiny

The twenty-second of October 2008 will go down in history as the date I received my Cochlear Implant.

The operation apparently went for four hours, under ten minutes from my perspective. I remember being in the ante-chamber with the anaesthetist [anaesthesiologist to the americans] then being wheeled into the operating room [O.R. to the americans]. They had given me some injections via one of those easy-injectorisers in my poor hand. Then I woke up somewhat groggy in another room. 

I had a pillow tied to the side of my head. And it ached.

My mouth was VERY dry [remember, no saliva] after not drinking since 10pm the previous [tuesday] night [3pm wednesday by now].

The rest of the day was spent drifting in and out of restless, not even, slumber. More like re-unconsciousness. Not restful.

In and out of sleep until 2:30 thursday, got up walked around the darkened ward, back to bed, repeat every hour or so until 6am when they get EVERYBODY up. Get OUT!

So, they'd damaged my right tonsil [yes I still have them] forcing a tube down my throat [hurts, and blood too] but generally a neat job. Can't get anything wet ear-wise for at least 2 weeks and I'm on antibiotics and paracetamol for the not very much pain [considering].

Right now 9pm thursday - it's a bleak nite outside. Just had some family over for dinner. Right of my head aches. Tired.

Let's hope.

Big Wednesday

The big day is tomorrow. Coincidentally my #1 cochlear contact is having his second implant the same day [Me - RPAH, he - Westmead]. There's too many coincidences in this exercise.

How do I feel about it?
After so many operations and treatments over the past six years I'm prepared, not worried. I hope that the result is as good as many say it is. I mean many. Not looking forward to the prolonged recovery and acclimatisation ahead. Boredom will inevitably set-in, I'll be ready for 'switch-on' in three weeks or so. And I hope I can hear something, but there's no guarantees.

On TV a couple of weeks ago I saw on 'Talking Heads' an interview with the cochlear pioneer Prof Graeme Clark. Impressed with his humility but also his drive to achieve "perfect hearing" for implantees. I emailed him as soon as the program finished.

Transcript here

The Call was Received

Today I received the call that I have been scheduled for the installation of a Cochlear Implant. The operation will occur on Wednesday 22 October 2008.
More news as it happens

Lip-reading Classes

We attended our first lip-reading class today.

A bit daunting at first. We were the newcomers and they all seemed very social.
We started off slowly and my minder said they were acting as though I wasn't deaf - she had to keep reminding them - he can't hear, he's deaf! Hard of hearing is a relative thing, I'm at the bottom of the scale, but also at the top from the other point of view.

It appears I have [as I suspected] been unconsciously lip-reading to a degree. [There can be no lip-reading if your head's in the cupboard can there?]
I was able to get the gist of a lot of what was said. Of course the teacher was speaking very clearly for the class. Some things came out ridiculous. Luckily I could check what was actually said on another sheet of paper! Numbers came quite easily.

After an intense hour of lip-reading the class finished and our classmates all scuttled off to parts unknown. We signed-up and paid the subscription. I can certainly recommend the class, even if you're not completely deaf!

We also met two volunteers who are themselves cochlear recipients. They all seem like a nice bunch, mature. One fellow said [I think] "Dont worry we'll take care of you" and I think they will.

Better Hearing Australia [Sydney]

I met Rick

I went to his office in the city.
We met in Martin Place - I think he picked me out, wearing all black adrift on the sea of suits. I suppose I stood out.

We went to his office and spoke generally but also specifically about some aspects of the implant only a recipient might now. Like how things sound via the implant. Also some handy tips - DVD player on the train while commuting [he's a movie buff, something else to talk about] with the implant off and the subtitles ON.

[This is a big thing - some of you will know that I enjoy the odd movie, in a cinema. How can I do that now without subtitles? No dialogue, no music, no sound effects]

Anyway it was a very positive meeting. He's very accommodating as are all the cochlear community. I think it is a community.

Meeting an Implant Recipient

As part of the process the Cochlear Implant people recommend that prospective implantees meet other people who have been implanted. They try to match you to someone in similar circumstances or similar background, but everyone is different

It's a way of allaying fears and misconceptions prospects might have and broadens the real knowledge of the intended recipient.

There are two I will meet.

One fellow is a IT consultant and there'll be more about that later

The other, if I remember the story correctly, is a girl who is under-10 deaf since birth.

She is now able to play the trumpet. And her father took up the trumpet too so he could play with her! How's that!?

There'll be more as it comes to hand

Getting an Implant, What's Involved?

The mechanical side goes something like this.
A Sound Processor is fitted like a hearing aid behind the ear. This captures sound and coverts it to a digital signal, like my hearing aids do.
The Processor then sends the digital signals to an internal implant which contains an electrode array.
The internal implant then stimulates the hearing nerve directly, via the electrodes, bypassing the natural eardrum and other structures in the outer ear and inner ear.

Surgery
During the surgery a little coil is inserted into the cochlea [Wikipedia link]. It spirals around within the cochlea itself. It's very small! This coil carries the electrodes which stimulate the nerve.
During the same surgical session, the part which is mounted under the skin on the back of the head is also put in place. You see the outside part of that on the back of people's heads.
The operation takes about 2-3 hours, or 5 seconds if you're the recipient!

Why do it?
At this point in time, I have NO hearing. None. Tinnitus doesn't count, although I have PLENTY of that!
I can't speak to you one-to-one easily, you have to write me notes. I can't hear music, birds, surf, cats meowing. I can't hear that car that's about to run me over.
OK we can do text via the internet and I can have a phone call via the NRS [excellent service]. People have said it's a blessing in disguise - maybe it is for five minutes but I think it's potentially dangerous, both physically and mentally!
Anyway - that's why I'm doin' it.


Links
Sydney Cochlear Implant Centre
Wikipedia, about [Cochlear Implants]
National Relay Service

Cochlear Assessment #2A

I met with the Senior Audiologist on Friday 19 at SCIC HQ
Thank goodness for the Health Advocate, acting as my ears. Even so, the organisation seems very welcoming for people in my predicament.
We went thru the physiological aspects of the implant, with an actual bit of someone's skull! The little bones and the tunnels. Very awe-inspiring. Very.

It appears that my situation is good for the implant. I'm in the queue
Once the implant is implanted, via surgery, there'll be a healing period before switch-on [seems they have a term for this], when the implant is activated.
Then there'll be approximately six months of adjustment, both the implant and me I expect.

Waiting on the next appointment

Cochlear Assessment #2

The second appointment, when I'll meet my co-ordinator and support team has been scheduled for Friday 19 September. The appointment will be held at the SCIC HQ at Gladesville Hospital, coincidentally where I lived for a time in the 70s. Too many coincidences in this cochlear business.

Cochlear Assessment

Today I had the assessment to see if I am a candidate for a cochlear implant.
The procedure went like this. The cochDoc inserted an electrode directly into each inner ear one-at-a-time and stimulated each one. Amazingly I could hear the sounds generated, mostly sounding like crickets or frogs and I had to say when the volume was increased/decreased, and rhythm within the sounds.

When he stimulated the left ear it induced a sense of dizziness, apparently that means my balance centre-the labyrinth is intact.Therefore, they will leave this side and implant the right side.

Waiting time? Seven months.

What can I do? I need to be able to hear what you say [make it interesting], and the higgledy-piggledy birds and function as a [relatively] normal human being.