RE Things 
Monday, June 19, 2006, 12:24 PM
Today as I was leaving the house I set the house alarm. I noticed at this point that the beeps which I have been able to hear for some time now sound much more crisp and sharp. They are very easy to hear these days.

I remember the days when I used to turn the house alarm on or off and as soon as the beeping started my tinnitus would kick in and I would not be able to tell if the alarm was beeping or not as it all sounded the same. The same problem applied when I set the alarm off by mistake - my tinnitus would kick in and I would be unsure if I had set it off or not!

Itís much easier to hear the check out girls these days. I used to have a trick where I would say no, no, thanks. Which if the check out girl asked do you have an ASDA card, do you want cash back? Then we would both be fine. If she said have you had a nice day, have you got an ASDA card, and then we would both be confused, especially if she said why not? Because then I would not have a clue what she was on about since I never heard her in the first place.

I even have little chats with the check out girl these days, we both agreed that the baby that looked at us as he was pushed by his mum was cute and we both like cooking. Normally I would try and get out of there with as little chat as possible.

Since I have been reading on Michael Chorony's experience it has made me think more about my own.

The one thing that I never understood was how professionals seemed to lack understanding about lip-reading. I have even looked for papers or studies about it - but I have never found any.

For example has any one ever noticed that there is a method to lip-reading.

ie

Lip shape comes in mainly five shapes

Thick lips
Thin lips
Symmetrical lips
Top thin lip, thick bottom lip
Thick top lip thin, bottom thick

The only thing that might change this is an injury or deformity to the lip but the above will still apply.

Then there is accent

English
French
Italian
American etc

Which all are the same from person to person and the only thing that changes is dialect

Ie Scots from Edinburgh do not sound like Scots from Glasgow

BUT they still sound Scottish, and this reflects in their lip patten

English people from London do not sound like English people from Manchester or Newcastle or Liverpool.

BUT they still sound English.

Dialect probably is the more complicated thing as it can change a pattern of speech from place to place. Where as accents are more predictable and tend to be easier to lip-read.

The only thing that can make things more complicated is when say a French person learns English with a Manchester accent and retains their own French dialect. Then it gets difficult.

Now the thing that I realised by the time I was 16 was everyone owns their own blue print lip-pattern which is on top of everything else I have just explained.

This comes from the type of family they come from, the way their mum and dad and other relatives speak and their DNA. It remains the same for their whole life and does not change with the acceptation of a stroke perhaps.

I found that once I understood the pattern of their blue print, and I had got used to their accent and dialect. That I would not have difficulties lip-reading them again. I could store their blue print to memory and it would come back to me if there was a long distance between the last time we met.

What makes lip-reading so excusing is understanding the blue print for every new person I meet and storing it to memory. Accents are easy to remember, as itís like seeing apples and thinking oh they are apples.

Blue prints are different they are totally unique to each person.

Enough about lip-reading any how.

Today something terrible happened. My processor coil split!

I try very hard to take care of it Ė but the bugger seems to twist and curl up no matter how careful I am.

I always brush my hair before I put it on; I always hold the processor rather than the coil. But still the coil splitsÖ.

Surly they can make them a little hardier than this? No wonder NHS refuse to justify the cost of a second one. The parts keep breaking!

In the year that I have had the processor (and thatís not till the 30th of July Ė which is still eleven days away) I have had two split coils and three cracked cases.

My heart goes out to all those peeps that have to pay for the parts of their processor. For the cost of staying hearing must be very high.

This is the cost of a cochlear if you wanted to go private with the Manchester Programme.

Pre-implant assessments - per session

Initial audiological assessment -£250.00

Information and expectations counselling -£150.00

Further consultations - £150.00

Magnetic resonance imaging (if required) - £780.00

CT scan with contrast -£720.00

Surgical cost of implantation

Implant device -£15250.00
(VAT exempt if bought direct from manufacturer)
Surgeonís fees - £2500.00
Anaesthetistís fees - £1500.00

Hospital accommodation, operating theatre charges,
Pathology tests and Radiology charges - £4000.00

Post-implantation

1 years post implantation rehabilitation and audiology - £11000.00

Annual maintenance (charged per visit) - £250.00

Spares and repairs - Charged as required

It was enough to make my eyes water! I could not believe that the implant and processor on its own costs £15250.00. I dread to think how much all these split coils and creaked cases are costing the NHS.

I remember the first time I went to the hearing repair clinic to get batteries for the processor. I was armed with a letter from the Manchester Implant centre which explained that I needed batteries every other day and should be given a box of 100.

I can remember feeling as if I had to prove I was not trying to rob the clinic unnecessarily of their batteries and I did have a good reason for wanting a 100.

I asked for batteries for my hearing aid as well and they gave me one pack which had six batteries in it. I asked how long they expected this one pack to last me? They also gave me one tube for the ear mould and told me if I wanted more I had to go back to the clinic. (These tubes need changing every 2-3 months!) The parking costs £2.70 for one poxy tube!) I explained all this to the admin, who crossed her arms over her amble bosom and stuck her lip out in a determined way, she raised her eyes to her colleague if to say ďhere we go we have a right one hereĒ and I knew the battle was lost. As much as I am grateful to the NHS, some of the people that work within it do not have a #*&%$£*$£@ clue.

But I hate being negative so to end on a positive note, a car alarm went off just now and I knew it was out side but not what it was. I could hear it quite clearly. Once I looked out and realised it was a car alarm it started to sound like one too. So I have learnt and identified a new sound! How exciting is that!!!! *grin*


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RE The Rebuilt Webpage by Michael Chorost 
Monday, June 19, 2006, 07:27 AM
A friend gave me the link to Michael Chorost Web Page

www.michaelchorost.com.

I was moved to tears (seems to happen to me a lot these days I must be getting soft in my old age) by the quote:

My misfortune is doubly painful to me because I am bound to be misunderstood; for me there can be no relaxation with my fellow men, no refined conversations, no mutual exchange of ideas.

From Beethoven's will.

I remember watching a film of Beethoven's life and how much I empathised and pained for his lost of hearing. How difficult it must have been and how wonderful he would have found todayís technology I am confident that he would have done everything in his power to experiment with different music to discover what works best with implants. We would have had a very different Beethoven I am sure.

There is also a link with a download of the first chapter of Michael Chorost book which is as good as Amazon promised it to be.

http://www.michaelchorost.com/docs/Chor ... bution.pdf

I canít wait to receive it now! The thing with him is he is refreshingly honest, clear, very matter of fact and down to earth. Even down to the point where he is over joked with his first negative review. Bless.

I have read his first chapter and also the negative review because I was curious to why he liked it so much. I understand now that his experience of going deaf has been very different from mine. He was hearing impaired (his own words) which means from my point of view he belonged very much in the hearing world - he could use the phone with ease. The fact that he suddenly became profoundly deaf in a very short space of time must have been terrifying and thus affected the way he views himself. He lost his identity and became cyborg.

I never lost my identify, being deaf has always been what I am and will always be an important part of me. It made me work harder, strive further and achieve more than deep down I thought might be possible. In it all I did achieve everything I set out to, I just wish I had believed in my self a bit more.

So for me having an implant did not make me less human, it did not make me less me. I am still ZoŽ and I always will be. What it did do is enrich my life beyond my wildest dreams. It gave me a taste of what life can be like, and it has been a wonderful roller coaster ride that I would not have missed for a million years.

I donít take my life for granted - I canít afford to. after all with the implant and my pacemaker - I am battery powered.

What is interesting to see, is how Michael has developed since he wrote the book. Reading from his webpage he says that Rubin made one reasonable criticism in that he did spend too much time on the idea of the cyborg. Michael said he now realised that this is based on a dated science-fiction fantasy of spiritual abnegation.

To quote Michael:-

It simply makes no sense to label a person a ďcyborg.Ē Itís like labelling someone a ďFiatĒ because of the car they drive.


I also agree with his sentiments that it is not what the implant can do to you that counts; itís what you do with it.
x


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RE Rebuilt By Michael Chorost 
Sunday, June 18, 2006, 03:49 PM
I have found a book called Rebuilt by Michael Chorost who wrote a scientific memoir of going deaf and getting his hearing back with a cochlear implant which he calls a computer embedded in his skull.

He goes on to say that Science fiction writers and filmmakers have speculated about cyborgs for decades, and in his book he attempts to reveal what itís really like to have part of oneís body controlled by a computer.

Sounds interesting. I am not sure if I feel that my cochlear implant controls my body in the same way as my pacemaker controls my body.

Hmmm... My pacemaker keeps my heart beating, which in turn keeps the blood going round and keeps me alive.

My cochlear sends signals to my brain so that I can hear better - is that control over me? Or control over my own damaged cochlear, or control over my brain, thus me?

Guess I am going to have to wait for the book to come from Amazon!


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Re Beeping in the kitchen 
Saturday, June 17, 2006, 10:22 AM
Today while I was cooking I heard very clearly some beeps in the kitching but it stopped before I could figure out what it was.

My partner came in and I said did you hear that? Nope...

I had a little think about it and walked toward the grill and noticed that it was flashing it was ready. I then figured out that it beeps after five mins of warming up!

My! How the hearing live! Such easy lives they lead. Lucky souls.

I count my blessings too for I feel very lucky each passing day.

I notice more and more sounds, which seem to always sound clearer today, than they did the day before.

Doughlas from the Yahoo forum had his operation yesterday and he went home today. I have seen his photos which look good, although he does have some serious brusing there! I guess it is all down to the surgon to decide how big the scar will be.

ALL THE BEST TO YOU DOUGLAS MAY YOU HAVE A SPEEDY RECOVRY.

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Re it sounds odd but 
Wednesday, June 14, 2006, 05:59 AM
I know it sounds odd, but I am sure I can hear better with the un-implanted side now!

Itís almost as if the implant as switched something on in my brain and made it realise "hey there is sound coming through here look!" "what does it say?" "OOh can we work it out?" "Lets give it a try"

Without the processor I can hear much better on the hearing aid than I ever used to. I can actually work out what people are saying without lip-reading although only one word out of say 5 I get. The thing is I got nothing before so thatís a big change for me.

Also I have noticed with no hearing aid or processor I am still hearing things! I can hear myself climb the stairs. I never noticed it before I thought I could hear nothing. I threw a box in the kitchen just now and I was stunned to hear it go bang on the floor. I think I got so use to not being able to hear things that I did not bother listening for them any more.

It really is true that you have to re-programme your brain, re-educate it and re-train it to listen. Itís almost like coming out from a long sleep!

I decided I would call some companies today to arrange for a quote for cutting down our trees which are now house high. The first call went well and I got his name and time that he would come round tomorrow. The second was an answer machine and I could not understand it.

The rest rang and rang and the last one answered and again it went well and I got his name and time. I checked back the name and time and heard him say yes.

It was quite scary and I did not tell them I was deaf, I did not have any really problems but I did have to concentrate hard.

Maybe it will get easier the more I practice.



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RE HAPPY BIRTHDAY! 
Tuesday, June 13, 2006, 01:25 PM
Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Dear Cochlear,
Happy Birthday to you!



Thank You Cochlear, and the Manchester implant centre for everything you have given me!

So my cochlear is one year old today, and what a journey it has been. I have seemed to have celebrated this birthday by designing the logo for ReSound and the Cicada Club both which support people who have had Cochlear implants.

Tonight I am going to cook a celebration meal and eat a slice of carrot cake to wish my Cochlear many more years to come. On switch on day which was the 30th June we will go out for a celebration meal as that was a life changing day.



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RE A Visit to the Pet shop 
Monday, June 12, 2006, 10:40 AM
Today I went into town and I heard the church bells ringing. As I have never heard them before I did not know how to count the rings. Does ding dong count as one ring or two!?! Still that a side they sounded lovely, and I can certainly understand the appeal for church weddings if there are bells ringing out now.

I also went into the pet shop for a look around as I really want a puppy! They did not have any puppies but they had two lovely tortoises which I fell in love with. I had a lovely chat with a lady who already had a tortoise she was telling me that she does not use the expensive vivarium that they like you to buy these days as hers sleeps under the cupboard where the draw has been taken out! To be honest my Nan had a tortoise and it was fine in the summer, but in the winter it went in a box in the shed.

They also had a blue and gold Macaw which was the size of a two year old child. I said hello to him and he looked at me with interest. I was just reading what it said on his cage and he coughed at me and then barked loudly like a dog! I looked up and said "oooh aggressive!" and he replied "yes!" So I said well you did not say hello! and he said Hello!, so I said "ah being nice now then?" and he said "ahh, yes, Hello!" I could hear him very well and he had a lovely voice. I was close to tears when I walked out the shop coz I have never heard a parrot before, especially not one bark and cough at me to get my attention.


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Other things I have now realised 
Sunday, June 11, 2006, 05:10 AM
While my friend was here I noticed that her voice changes when she is having a small seizure. Her voice gets very soft and sometimes goes very quite.

Now and again it looks like she has lost her trail of thought - but she still continues to finish what she is saying but it sounds very vague.

It is quite handy to be able to hear this, because I can moderate my own behaviour or the environment so that it reduces the risks.

This is something I am sure I never picked up before because I would simply not be able to hear her when we were out and I would be lip-reading. So I often got the physical signs that we were in trouble and they normally come when itís too late to prevent the seizure anyway!

Itís amazing how easy being able to hear better really makes life so much easier.

I no longer have to hunt round the house for James I can find him by sound. It takes a lot less time these days!

I do not always put my processor on first thing in the morning and sometimes James is around and he will call me and call me and then march in and have a quick peek under my hair and say oh youíre still deaf! Put your processor on for gwald sake! lol


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Oh the worry! 
Saturday, June 10, 2006, 09:07 AM
My brother rang me today as he was very low because he had failed drill which meant that they have put back the date of his passing out by two weeks.

I could hear the disappointment in his voice he sounded so fed up and depressed! It was horrible - I canít empathise enough towards people who get that devastating call on the telephone. It really is quite distressing. Something I have never had to deal with before.

I worry about him all the time.


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I can listen to my friends while cooking! 
Saturday, June 10, 2006, 06:04 AM
Normally when I am cooking it is almost impossible to chat too, but now it is easy to do and I really enjoy it.

I was able to prepare a meal and chat away and catch up making the most of the time we had together without worrying that I was going to have to spend 60 mins doing the meal (60 mins of lost chat!)

Itís really easy to listen while I am chopping or arranging food or washing up these days without having to lip-read!


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