5 years on

Here is my take on the difference between normal hearing and the CI:

The sound is different to normal hearing, it is a bit more robotic. There are still difficulties with background noise. Hearing people might be able to hear conversations across the room.. I can't, people need to be fairly close to me so I can hear.

I can talk on the phone, so I don't need to lipread. I can hear sounds like sand falling on floors, but sometimes need to ask what it is if I don't recognise it.

I prefer having subtitles for movies and TV, usually because the background has music. But that is my preference, I know some CI users who manage without it.

I make it sound awful, I've just listed all the drawbacks!

BUT - the CI gives enough dB that speech can be understood without lipreading and that is such a blessing.
It gave me a confidence that I had lacked, I am now sure of myself that I have heard something right and can join in group conversations better, rather than hanging back wondering if I've heard correctly and looking like a dickhead if I'm not on the same subject.
There are a lot of sounds (like computer beeping, doorbells) that I can hear again and little things like that make the CI all worth it.

It is definitely one of the best decisions I have ever made to get implanted, being late-deafened in in an oral family, it has improved my quality of life immeasurably!

There is a wonderful webpage which shows hearing people what it sounds like to a CI recipient: http://www.pbs.org/saf/1205/features/Interactive/intro1.htm

So, saying all this and saying how great the CI is, I would recommend it to people, especially to people in "hearing" families but I'm not going to scorn people that don't want one, it is a very personal decision afterall!!

Dogs and cords do not mix

Last night, we were watching Red Riding Hood. This didn't have subs, so I connected the CI to the TV (via a cord), to make things clearer/louder for me.

Anyway, about halfway through the movie, Taffy decides she wants to go outside and walks into the cord, ripping my CI off my ear.

Apparently I scared the hell out of everyone (Stu, Taffy, birds) when I yelled out at Taffy to get her to stop. Oops. I am a bit protective of my $8000 ear piece :P

Found it on the floor, minus the little clear earhook that helps it balance on my ear. I didn't realise they came off :P I even have spares in my CI box of tricks. But Stu found my original one so it could sit on my ear again and I made sure the cord was on the ground properly so Taffy could walk OVER it, not THROUGH it.

Reddit again

It seems that Reddit has posted my vid again.

HI REDDIT!

And since all my mobile phone posts, I actually got myself an iPhone which doesn't have T-switch at all but I can hear well enough if the volume is up really loud. Still prefer sms's. But I love all the apps :)

Mobile phones

I sent out emails to various Federal Politicians, suggesting we have the same legislation as the US does, as regards to ratings for mobile phones.

I had one assistant ring me to tell me to contact Telstra. To go into a store and ask. OMFG, like I haven't contacted Telstra a billion times already to try and get information from them.

But they missed the point in my email. I want RATINGS on phones. Manufactures can't even tell me what handsets have t-coils in them. I want this information available for every handset, like they do in America.

If a politician can't understand that, then what in hell can be done about it?

Sound from the CI

Due to recent visitors who may not know about cochlear implants, I'll explain a bit about the sound:

As I was late-deafened, I 'remember' sound so I can compare how it is to normal hearing.

When it is first switched on, there is noise. As in my video, I was spoken to but all it sounded like was one high pitch, no understanding at all. I was expecting actual speech so that was a bit of a shock.

Coming out of the office after activation, when playing with my mobile phone, I could hear the clicking of the keypad! It was the everyday type noises that I recognised almost right away and I spent weeks revelling in all those little things that people take for granted, like the click of the light switch being turned on and off and the pffssshhhttt noise when opening soft drink.

It took about 2 weeks before I could understand speech without lipreading. I believe that is really fast, some CI recipients who are born deaf my never get to that point.

I could not live without my implant. It has helped me so much. Saying that, it is not like 'real' hearing. It can still sound a bit hollow and robotic. I am still hard-of-hearing because I don't understand everything. I find it very difficult to hear when there is a lot of background noise. I still prefer to have subtitles when I watch TV and movies.

I couldn't use the phone when I had hearing aids, I could not understand a thing. But now I can pick up the phone and talk to my loved ones and that is priceless :)

Excited!

It's very exciting, my YouTube video has suddenly got very popular and is being posted on lots of different webpages! I wondered why the hits had tripled in the last few days :)

From Buzzfeed

I was interviewed by ninemsn and an article about that will appear tomorrow... it's great that people are becoming aware of this technology!!!

More updates on mobile phones

Thanks to my dad's suggestion, I contacted Telstra's disability department about mobile phones for CI users. They actually gave me a specific phone that will work well with the cochlear implant.

Of course, the phone is their own brand, LOL.

But we have found this great site which lists phones with high compatibility with hearing aids:
Phone Finder

As that is American, now it's just a matter of finding out if those models are also sold in Australia.

Motorola Australia also has a webpage devoted to accessibility, including mentioning that all their phones are built with telecoil:
Motorola

So there is information out there!

Bits and pieces

Recently, I captioned my YouTube video of my switch on. It took Stu (my husband) 2 hours to caption a one minute video! Such an involved process!

You Tube Video

Other things:

About a month ago, I received an email from someone in the US who wanted to interview me about my CI experience for an article she was writing.
This is the finished product:

CI article

Another recent happening is a Senate report on Hearing Health in Australia was released. I actually made a submission and was quoted on the cost of hearing aid batteries.
I wish I made a mention of mobile phones :(

The PDF of the report : here

Mobile phones

In the US, they have a M and T rating for cell phones. M for Microphone and T for telecoil and the higher the number, the more compatible with hearing aids/cochlear implants.

Unfortunately, Australia does not have this rating and our major Telecommunications company has fobbed me off TWICE (once online, once in a shop) as they can't help and don't offer to do any research in it.

Yesterday in the shop, I explained the Iphone (as an example) had terrible sound and I just a blank look with "but that volume is quite loud". Well yes, it might be, but it's not compatable enough with telecoils.

On the US Nokia site I actually found a list of Nokia phones with this high M/T rating, but which Australia doesn't sell.
So I email Nokia, explaining this rating and these phones and do we have anything similar in Australia.
I get an answer that Nokia does not keep records of these ratings and refer to the Nokia pages to search for a phone that suits your needs and preferences.

DUH, this is why I EMAILED YOU.

Obviously in Australia there is a HUGE gap where there is no information available on compatible mobile phones!!!

Nucleus 5 : switch on

This switch on was nowhere near as emotional as my first one!

She put it all together as it comes in lots of pieces. She hooked it up to the computer... added all the previous settings from my old one and turned it on.

Audiologist: How is it?
Me : Fine
Audiologist: Any different?
Me: S's a bit more clearer, that is about it.

So there is not much difference with it in every day situations. BUT it is much lighter on the ear and looks cooler too :)

The audiologist showed me how to add the battery packs on and how to use the remote. She didn't show me how to use the buttons on the actual processor, saying I would just use the remote (which looks very ipodish).

Stu and I left after being there only half an hour and went to the city, to test if it really is better in noisier situations like it claims. It is sort of better, the remote definately helps in working out what program is which so you can adjust it to the noisy situation.
But while at the pub, I did work how I can use the buttons on the processor, as lets face it, carrying a remote around all the time is a pain in the bum.

On the way to the city tho, I did ring dad from the mobile to test that and it worked ok.

But at work on the phones, I'm having problems. At the moment I can't tell if it's the setting (I can hear background noise which is great at being able to tell how loud you are talking, previously it cut out all background noise) or if I just haven't quite worked out the best way to place the phone.

Also, because I can hear background noise, I can't tell if the auto-t switch is kicking in. This is why I wanted this processor, because I didn't have to press any buttons to use the phone, it can detect the phone and automatically switch programs.
This is easily fixed with a visit to the audiologist tho, she can turn down the background noise.
I also want her to set it as a permanent feature, not something I have to set with the remote (cant' believe she didn't set it in the first place, or at least ask).

My disposible battery pack I think will need to be replaced as it's not fitting tightly on, it kind of wobbles a bit. I don't want that twisting and falling off!

I do have a major problem with the new processor. My everyday setting is currently on it's maximum setting. It is the same volume I had before... only I used to turn it up in quiet situations. Now this is the loudest it will ever get.
What is wrong with Cochlear?!! MAKE IT LOUDER!!!!!!!!!!!

Stu doesn't think I'm doing any worse or any better with it.