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.

Delayed - continue circling

A minor setback
The scheduled assessment intended for 20 August has been postponed due to illness. The cochlearDoc is sick with a virus. I hope it's not the one I have!

So, holding for a new appointment date.
•UPDATE• New appointment 5 September

Condition: Stable on 100% deafness, 110% for the Olympics!

How to Subscribe

Use the RSS, Luke!
You don't need to keep coming back here to check if I've written anything new. Let your computer do the walking...

Here's how
Subscribe to the RSS feed [or Atom]
Mac OSX10.5
Mail [click]
OSX 10.4 users - use Safari, won't work in Mail, or Firefox not available in Entourage or Internet Explorer in Mac-Land

Macs and those other machines
Firefox [click]
Safari [click]

PCs only
Internet Explorer [click]
Outlook pre-2007 [click]
Outlook 2007 [click]

Plug-ins
On the Mozilla group you can also install RSS plugins - mini add-ons which enhance the functionality and allow you to subscribe and view the feeds in your browser. Too many to go into here. They all work the same way. Locate the feed address, bookmark it and then the computer checks for updates on a regular basis. I've tried a couple an Sage works pretty well, if you think you need to something other than the built-in options.
Plug-ins for Firefox are available [here]. Follow the instructions to install.

Still Looking?
Search Google for "RSS reader" sites for the lists of RSS aggregators. Take your pick!
Good thing about the Mozilla based ones - they're ranked by popularity and other factors.

The Critics are Raving

Here's what the critics haven't said about the blockbuster new blog "Curse of Silence"

Condi, I got it! That Bud Abbott guy in Orstraya, says Hu's the President of China! - GWBush
[Earlier] That's right, Lou [Costello]. What's this blog on second and I got no freakin' idea what's on third. Have we told you we love you? - TAbbott, MP
Mr President, what's a blarg? - CRice
Should I stay or should I go? Ego is not a dirty word! - PCostello, p/t MP
No all you scumbags got it all wrong! I'm on first treasurer in the World, Costello's in the Land of the Fairies, MadMonk is on second, never to progress. Bush and Rice, YOU're on third waiting for the bus if you had enough brain between you!! PKeating#1 Treasurer, Placido Domingo Society

Cone of Tinnitus

Many of my contacts were shocked when I told them about my tinnitus not diminishing with the onset of deafness.

Tinnitus is the perception of sound [wikipedia] in the ear in the absence of corresponding external sound. Chemotherapy is mentioned as a possible cause.

My tinnitus, and it is mine all mine - you can't hear what I can, is an incredible phenomenon.
I have a range of sounds, different sounds at different times, sometimes one at a time, mostly several at a time.
I've had Parisienne ambulances - you have heard those brilliant trumpets while eating a baguette in the Luxembourg Gardens. Yes you have.
I have

• James Bond theme music
• movie soundtracks, multi-track with percussion, horns and strings, over and over. Wish I knew which movie
• wah-wah guitars
  
• little brass bells
• taps dripping in the next room into a half-full bathtub
• something in time with my pulse, whooshing
• other percussion

Of course it may be the absence of hearing real sound which has allowed the tinnitus to come to the foreground.

Is it annoying? You bet - sometimes it wakes me up. I wish it would just shut the f*#% up!!

Mascots

This blog has two mascots
They are



Chubbs
This longhaired tuxedo cat lives in Annandale Street Annandale. He sits on cars. Not just cars, but trucks, trailers and scooters if there's one handy.
He's been out there so long the fur has changed from lustrous black to almost sun-bleached blonde.
It's a different car every day and he's stretched out in a most luxurious way if he's warm enough.
He has an accomplice known as the DSH [domestic shorthair] tuxedo. Sometimes they sit on a car each - don't want to get too crowded!
On cloudy or rainy days poor Chubbs is inside watching TV.






The other Mascot is the Butcher Bird
[known locally as the Higgledy-Piggledy bird]

There has been at least one family of Butcher Birds living in the park near my place since 2002. It is one of the sounds of my locale that means "home". They have a very melodic song, the kind of thing you might mindlessly hum or whistle as you go about your daily business. They sing to each other - one calls and the other responds. Sometimes they'd respond to me [I think] if I could whistle closely enough to the their call. I've heard them all around Sydney and elsewhere and the songs are different for each group. Beautiful. I wouldn't mind hearing them again one day.

Australian Museum Birds in Backyards page
[© Photo: K Vang and W Dabrowka Australian Museum]
Wikipedia link

Shock to the System

He woke that morning, a morning like any other.
The Sun was shining outside.
It had been a chilly night but it was warm in bed.

It was the 26th day of his 50th year.
He reached over to the hearing aid and put it in as he did every morning.
Turned it on, turned it off.
Turned it on again.
NOTHING.

-
Morning News Flash 31 July 2008
This morning at 7am John Couani woke to find he was getting no throughput on the hearing aid. He could hear the tinnitus as usual, louder and brighter than ever. But actual hearing had been switched-off.
He reached for his partner, sleepy-head to break the news. A stream of obscenity emanated as usual, but he couldn't hear it.

Thanx!

The responses to the original letter were many and varied.
Thank you to all who sent their best wishes - it is greatly appreciated.
Most were very supportive and I have responded to each one individually.

To friends - thanx for being there
To clients - I intend to keep going as best I can
To family - what can I say?

The Original Letter to Friends, Clients and Others

Friends Romans CountryMen and Women

Folks

I have some news to report which is not good.
You will know that in 2002 I underwent cancer treatment. That all went well and the treatment has so far been a success! There are however side-effects to the treatment and the most obvious one to you is my deafness. It has been progressively getting worse.

On July 31 I woke to no hearing at all*! I had been taking steroids for nearly a week because of the chance they might stave off this situation but to no avail! I was able to see my EarDoc on Friday morning and he administered even more powerful steroids [there go my olympic aspirations!] 
* I still have multi-channel tinnitus

So telephone conversation is impossible. I can SMS and use Skype/MSN/iChat [ask for my usernames via email] Speaking one-to-one is almost impossible. I can lip-read if you face me [funny how people don't] - to a degree. Paper notes required. Email me any time!! Work - it remains to be seen how that will work. I have done a couple of jobs without hearing and they worked OK but that depends on the patience of the customer. I hope my current clients are OK and will tell me if they aren't! I expect to work hard to keep them happy and chugging-along. But there will be instances when it won't work.

The future
Stay tuned - if there is no improvement I'll be investigating a cochlear implant with the EarDoc. It remains to be seen whether I'm suitable, how affordable it is, many aspects to consider. Not good. If there IS improvement, you'll notice, next time we meet.

Stay well JC