10 years a CIborg

T O D A Y

I was implanted for the first time ten years ago.
Unbelievable.

Highlights

• Circumnavigation of the globe with one (only) Implant in 2009. American Airlines cancelled my flight Paris - SanFrancisco. Bastards. 
• Travelled Paris - London - New York - Dallas FortWorth - San Francisco after midnight. Prevailed. 
• Van Gogh museum June 28 2018 post
• Birds Butcher Bird, Magpie [Birdlife Website]
• Wireless accessories
• Monica, Rick, KTok and other supporters

Downlights
American Airlines
NDIS - they're still learning what deaf people are
Music - it’ll happen

BIG day!!

I went to the Vincent Van Gogh museum this morning. I had thought “I wonder…”
What I was wondering about was how to hear the audio tour. 

I arrived at the museum and approached the audio tour people. They were only too happy to let me try it out before I committed to paying the 5€ fee.
I said that standard normal hearing headphones aren’t much good for me - quite noisy surroundings (school holidays, very popular museum etc), but…
I had my miniMic2 with me, and a 3.5mm cable male plug both ends. I plugged into the MM2 and the audio tour thing which was like an iPod/iPhone. I put the MM2 into cable input mode.
You cannot imagine - it was like a personal audio guide was talking to me. I had the MM2 on 80/20 so I could still hear if someone spoke to me, but background noise greatly reduced. You can’t believe how good it was.

A big shout-out to the Vincent Van Gogh museum staff. They were accommodating, concerned, helpful. Later when I spoke to one about the exhibit she seemed genuinely interested in my my opinion. I love VvG’s work. I saw an exhibit in Melbourne Australia (I’m from Sydney) last year and knew when I came to Amsterdam i’d have to see the major collection. Anyway, later i’d moved onto the bookshop, the interested young woman found me, thanked me for my input, and handed me a gift set of postcards. What an amazing gesture - it was emotional to start with, but this set me off! Of course now I’m on here telling you all about it, and some of you might come to Amsterdam one day. Check out Vincent’s museum, use the audio tour with your MiniMic. You won’t be disappointed.

Special mention to the people of Amsterdam too -they offer me their seats on the trams, very hospitable, VERY. 

There are good people in the world. I found some.

Link to the Museum. Book online!!

Implant3

On 20 January I went to hospital for an operation. One operation in my right ear consisting of - Removal of the existing cochlear implant and a spacer inserted
- Removal of necrotic tissue, a result of cancer treatment
- Removal of the spacer and implantation of a new cochlear implant
- A ‘blind sac’ to fill any space created by the removal of the necrotic tissue, seals up the ear canal.

The operation took 4 to 5 hours [I was unconscious] and was apparently successful. No stitches or staples, the ENT doc used something called skin glue to finish off. I think it’s something they use for burns patients but don’t quote me. feels kind of plastic behind my ear.

Third switch-on was on February 7 and was also successful.
I have just had the initial switch-on but no fine-tuning [starts next week], but already I have regained useable hearing. I had chipmunks at first, but just a day later it's waning. AMAZING how quickly the brain has adapted.
Remote - took up were I left off
TVStreamer - operational
MiniMic - works well
PhoneClip - excellent

Hearing thru one device for that period really made me appreciate having TWO implants, functional. Now I’m coming back to how I was in early January, which is pretty good. There will of course be a period of retraining over the next months while I’m getting accustomed to the new implant [same N6 processors]. What an experience!

Thanx Cochlear for the fantastic devices!
Thanx Sydney Cochlear Implant Centre, especially Audiologist Erika!
Thanx Cochlear Implant Experiences for being there!
Thanx ENT surgeon and medical staff at Mater Sydney!

Nearly back to bilateral…

And a switch-on movie

Blind Sac right side operation

The operation was performed on Friday 20 January and has been proclaimed a success.
Previous post

I'm in recovery mode now and the right side of my head hurts! Pics below [slight gore alert]

The operation apparently took about 4.5 hours [5 mins from my point of view]. My poor partner had to go and divert herself. Luckily a good Indian restaurant was found, for lunch.

What they did
The operation was to remove dead/dying/necrotic tissue in my right ear. So they removed the implant, inserted a spacer, removed the affected tissue, implanted a new implant [hardware upgrade] and made a graft using muscular tissue to fill the gaps and finished off by sealing the ear canal - the blind sac.

Why it was necessary
The tissue was receding in the ear and the implant could be seen in the ear canal. This might have led to ear infections, the implant no longer functioning, or worse.

How it came to be like this
In 2002 I had treatment for nasopharyngeal carcinoma, radiotherapy and chemotherapy. The treatment affected my saliva [none now, and the lack will affect my teeth], energy levels [not great]. Ear functions were also affected, including hearing [implanted 2008 and 2010] and balance. I can hear because of the incredible devices and I walk with a stick if I'm out and about.
I have a pre-blog blog covering the treatment time - John's Carcinoma Diary

Benefits
I wont need to use earplugs again. Previously I had been using plugs to protect against getting exposed tissue wet when showering, swimming. Water can convey and harbour bacteria.
So I can swim, bathe and shower without a second thought!

A hardware upgrade
The implant on the right side was implanted 8 years ago. As with all technology there have been nine generations since that time! I've had an upgrade on that side [2013] and expecting another in 2018.

What's next
I'll see the ENT surgeon next week and check healing. He's confident and so am I.
After that and when I'm able I'll start the switch-on process. I hope I can get up and functional as well as before within a month or two. Time will tell.

In the ward after the operation

Bandages off, at home

Side view

Commenting

I used to accept comments here, but in the past year this blog has been inundated with silly comments, and unwarranted advertising. Try as I might I find the restrictions too hard to manage - if I open it, I get rubbish.

So it is closed. 

Blind Sac right side

When I was implanted the first time it was determined that progress would go like this

• Implant the right [Oct 2008]
• Perform a blind sac operation on the left, which was the worst side,
  with necrotic tissue [Aug 2009]
• Implant the left [Feb 2010]

Now I'm 8 massive years past initial implantation and the right side is finally getting a blind sac. There's a new cochlear doc, the older one is retired, but he's very confident and I have confidence in his ability.

Here's a pic [slight gore alert]


In the picture the dark area to the lower right is my right ear drum. The horizontal structure in the centre from the left edge is the visible implant cable coming from the coil [under my scalp] going to the cochlea. Amazing, but you shouldn't be able to see it. It's because the flesh is retreating, and this is not good.

So surgery tentatively scheduled for January 2017.

Implant One, five years gone

Yep 12 November marks my first five year's use of cochlear implants.

What an amazing device.

Where would I be without it/them?

It'd be hard work, all visual cues and clues. I suppose I might have learnt signing language but I don't know anyone who does it. My clients certainly don't. So I couldn't work, unless I changed jobs. Communication would become almost entirely text-based.

Travel would be incredibly difficult. I could no longer travel alone. People around the world don't sign.

I could see how I could become insignificant. Could I still write things I couldn't hear! Could I sing any more? Maybe I could - when I do, I imagine how it sounds as I do it, but is that enough? You don't see "music by deaf people" out there.

Not that I'm significant now.

When I received the second one in 2010 it filled in a big gap. There's still gaps, not so much physical as usage-related, understanding. Let's hope they can be filled by forthcoming technology.

5 years gone

Yep

Five years since that fateful day in 2008. It seems like a long time ago. Like I've always had these devices on the back of my head. But I still forget them too. 

Maybe it's familiarity breeding contempt for them hmmm. 

But so much has happened. 

Round-the-World

Italy

US

New house

New neighbours

VegPatch, worm farm

Father gone

Subaru gone, the Bluebird has come

New recipes

New computer stuff

What will happen in the next five years?

Featured in a Publication, Me!

The Chris O'Brien Lifehouse at RPA [that big new building on Missenden Rd] have an article with me in their Winter Update! I wrote it actually - "Be positive and write about it"
Of course the magazine is about fund-raising and raising awareness for those 1000s of people who pass thru the RPA facilities every year. Too many.

Some make it, some don't. Thats just the way it is. I'm one of the lucky ones.

The article will be available online soon. And you'll be able to see my ever-hopeful countenance beaming from the virtual page. Jeez I'm handsome. I'll update this page when it's available.

I do have nothing but admiration for the dedicated and generous staff of the Head and Neck clinic and RPA generally. Maybe the Lifehouse is a worthy recipient of any donations you might have lying around the house…

Watch this space

- S P A C E -

Link - http://www.lifehouserpa.org.au/

Five Years re-Hearing

That's right

A few milestones coming up.
June 10 [or 13**] it'll be 11 years since I finished cancer treatment. That seems like sooooo long ago.

July 31 is the day I woke up deaf, this year is the fifth anniversary. Of course this led to being fitted with these devices and amazingly entitled me to the title "cyborg" [Thanx Michael Chorost!]. On the one hand it seems like only yesterday, but on the other, I've been using them forever, seems so natural.

Here's the original letter link - http://ilsordo.blogspot.com.au/2008/02/original-letter-to-friends-clients-and.html

Michael Chorost
Check out the books - very interesting
http://www.michaelchorost.com/

** Postscript - It was actually Monday 10 June 2002. Confirmed. In concrete. That's it.

AND

In October it will be five years since the first wondrous device was jammed inside the right side of my head.

Interesting video from TedMed

http://www.ted.com/

Why bother with captions?

There is a wealth of movies available from the so-called talkies era. The fundamentals of movie production were established well before Al Jolson came along. Names such as Charlie Chaplin, Buster Keaton, Harold Lloyd, Fritz Lang are true pioneers of the entertainment we now take virtually for granted.

The festival is on in Sydney in September, gone for this year but still available in other cities. Keep it in mind for 2012!

http://www.ozsilentfilmfestival.com.au/


^. .^

Videos of the year!

Here's a couple of videos which you may enjoy.
The first a cochlear switch-on movie





And a quick one for a candidate for the Republican nominee, re-dubbed. I think it shows what deaf people experience every day. What do you think?

3 years

Today is the day I went deaf 3 years ago.
Here's a link to the original letter

That seems like a long time ago. I can't say that it seems like forever because I can remember in some past life that I could hear. Hear music. Understand what people said. And understand what they were saying. Thanx for the devices which have made such a difference - I remember the helpless part where there was just nothing.

But let's focus on the positive - been around the world (again, with one cochlear implant), Italy, Acme still going, iPhone/iPad (well you might not think so), Washhouse. The clients who stood by me.

So raise a glass for me today 31 July. Then do it again, this time with some liquid in it. I'll raise my water bottle in return!




^. .^

Accessible Seinfeld

Since you went deaf have you missed being able to watch Seinfeld? Yes it's on the secondary digital TV channels, but without captions.

Now you can get Jerry Seinfeld's wisdom via a new website
http://accessibleseinfeld.com/

And Android users can download an app dedicated to the website as well
here

Like it? Hate it? Leave a comment! They will be passed to the developer for improvement and/or encouragement.

Have a look!




^. .^

100 Pushups

I need to build stamina and strength. The treatment has left me without energy and resilience. Even now 8.5 years after treatment. I have no balance and [I think] a bit more fitness might help me around that loss.

Then I came across 100pushups [http://hundredpushups.com/]. I started with 5 - I didnt even think I'd do that and I'm now on Week 3! The goal is 100 pushups and it takes 6 weeks of the program to get to the 100. It's a bit difficult [so far] but I expected it to be.

You can even record your progress on another website "pushups logger" and Facebook, if you want to.

Last session I did 46 total!! Unbelievable!!

More outstanding results as they come to hand.

Tinnitus is the result of the brain trying, but failing, to repair itself

An interesting article...

ScienceDaily (Jan. 15, 2011) — "Tinnitus appears to be produced by an unfortunate confluence of structural and functional changes in the brain, say neuroscientists at Georgetown University Medical Center (GUMC)."

Tinnitus is the result of the brain trying, but failing, to repair itself

Swimming again

Now it's been over a year but swimming has recommenced. The balance situation is even worse than last year, but strangely, swimming seems to be an exercise which helps me realise orientation in space. Considering that while I'm in the pool I dont have contact with anything fixed [floating in water] it's a bit weird. I dare say someone has a theory...

Music Poll

Six months with Number 2 [with results]

OK
Now it's six months since number two was implanted and coming up to two years for number one.
Maybe I should give them names but they can't be names which means this one is better than that one, must be equal.