testing, testing, my week as a lab rat

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I’ve spent a week as a research subject for Med-El in North Carolina. Of course I should have blogged about this sooner but various events have conspired to keep me away from my blog. Better late than never.

Sunnybrook told me that Med-El  wanted subjects with Med-El CIs and preserved hearing to help with their research into better hearing strategies and maps.  Well why not?  I would be able to take the time from work and MLM would be able to come with me so off we went.  There would be no direct and or immediate benefit to my hearing but, and this is the big but, I wouldn’t be where I am today if others hadn’t given their time and energy to research. It seems only right and proper to me that if you can then you should.

We flew down from Toronto to Durham via LaGuardia in NYC, amazing views from the plane.

We stayed in a hotel near to the Med El offices and drove in for testing from 9 to 5 on most days.  The tests were similar to those that I have had done at Sunnybrook with  sounds and sentences to hear and interpret/comment on. Just more of them, many more of them. Strangely tiring even with the many breaks and chats we had.

The people at Med-El are just super. Friendly, welcoming, helpful, organised. It was impressive to meet so many people -scientists, audiologists, admin, who were dedicated to helping us hear better. It’s really rather lovely actually.

When I was visiting I had planned to be more detailed about the tests and processes but I don’t think it’s necessary. I came away full of confidence in MedEl and the technology behind my implant and hopeful that I’ve contributed to improving the CI experience.

 

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18 months in

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Well I went up to Sunnybrook yesterday to see Amy.  She assessed how well I hear the higher sounds – the Ss and Ts  for example- and then made a new map to help me hear those sounds better.  One of the methods she used to assess how I heard the different frequencies was to get me to describe how the the beep sounded. Was it a buzz?  a beep?, did it sound like a microwave binging? or a banging on a pipe? One of them sounded like a pigeon, another like a bird in the distance. It’s strangely satisfying to be able to describe and compare sounds, it gives you a nice smug feeling.

I’ve been using the new programme and have noticed that when I am in the sitting room I can hear the sizzling of pork chops I am cooking for dinner.  I seem to be able to hear the TV better and earlier today I was listening to the radio easily.

Watching House on TV now and Cuddy just kissed House, it sounded sloppy. There could be some eeeooougg moments with this new programme.

 

little leaps

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After 18 months with a CI every day does not hold a CI moment and I like this. Being able to hear pretty well has become such an integral part of my life that I sometimes forget about my hearing loss – now that is amazing considering where I was when I started this blog.

My hearing with the CI is still improving though and I find that my CI moments are realising that I can hear in  situations where previously I would have struggled and or failed. This weekend I noticed conversations around me, that I could make out words spoken by people a few feet away or across the room in a restaurant. Pretty good eh?

 

and I’m Back

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again

My absenteeism from this blog can be laid firmly at the door of cyborgdom.  If  it wasn’t for those computers in and around my head then I wouldn’t be out and about, socialising, taking painting lessons, learning Tai Chi, going to the movies.

It really has made that much difference to my life and I have neglected the blog but I’m back now.  I’ve been reminded of how much I enjoyed the contact with other hard of hearing and deaf people because of a Facebook group for cochlear implant users. I’ve made some good friends through blogging, many of whom I have never met in person but that doesn’t mean that they aren’t real friends. The support network out there is amazing and if you are feeling isolated physically and emotionally then use it, grab it with both hands and make some internetty friends.

 

 

back to the movies, first time with a CI

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It has been a long, long time since I went to the movies and enjoyed watching without the aid of captions/subtitles.  Last weekend MLM and I went to see Harry Potter and it was just fab. Really great movie and I reckon I could understand almost all of it – which is great as I reckon that people with regular hearing don’t pick up every word.

The volume was loud, very loud so I had to turn my hearing aid off and turn the volume down on my CI. I also had it on the T switch and microphone setting. This was by accident really as it’s hard to see in the dark and the remote does not have a read out of which setting you have selected. Anyroad I discovered this after the event and  it had worked just fine.

Afterwards we went out to a noisy restaurant for a meal, that worked just fine too.  Sometimes I forget I have a CI and only later realise the difference, the before and after effects.

hotels and accessibility for deaf, hearing impaired, deafened, Deaf people

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I’ve stayed in a couple of hotels recently one in New York state and one in Ontario and asked both receptions what they provided for us so that we would know if the fire alarms were activated

The family owned hotel in NY state said they would give us a room near reception and come and get us if the alarms went off. This was okish, but it meant that we couldn’t put a chain on the door.

The major international chain hotel -newly renovated – in Ottawa said we should have asked for an accessible room. Duh?  Why? I don’t need to take an accessible room from someone who needs mobility access.  10% of people in Canada describe themselves as hearing impaired or deaf, 25% say they have some hearing loss. That’s a lot of accessible rooms that they need to provide.

So, we had nothing apart from my hearing husband and a spare key for my mum’s room so we could go and get her. Oh and the TV closed captions didn’t work with the remote provided so we had to make a fuss about that to get those up and working. This meant that we could not access the pay per view movies.  More substandard service for the hearing impaired/deaf/Deaf.

In my ideal world all rooms in all buildings will be accessible to all of us without our having to ask for special rooms and treatment. Architects  and designers can put their highly trained minds to work and deal with this so that it becomes the norm.  Multinational chains can spend some money making the environment inclusive for all.

Of course I’ve emailed the hotel chain to get their comments, I’ll blog the reply.

over a year as a cyborg

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I’ve been meaning to blog about my 1st CI anniversary for a while – since July in fact- but I keep being diverted.  This in itself is an indication of how successful the implant has been.

Back in July I went up to Sunnybrook for my 1 year assessment and map adjustments.  I could give you chapter and verse about my scores on various tests but telling you a little about how my life has been affected would be a better indicator of success than comparing numbers.

In May 2009 I had a profound bilateral hearing loss that was hardly helped by hearing aids.  I relied on lipreading in quiet to be able to hear a one on one conversation. Group conversations were impossible. The phone was impossible, music was  impossible.  TV was possible with captions, movie theatre was possible with captions but impossible in practice due to the availability of captioning. Theatre was impossible.

Conversations were stilted and truncated with few jokes, little spontaneity. Inclusion levels low with exclusion a prevailing feature in my  life.

Isolation and detachment were the dominant feelings.

In September 2010 I still have a bilateral profound hearing loss but now it is helped enormously by a MED EL cochlear implant on the right side and a hearing aid on the left.  I feel better, happier, lighter.  I chat pretty easily, I can use the phone, watch some TV without captions, listen to the radio in the car, go to the theatre,  I’m starting to hear music again. I can join in conversations; laugh, joke, understand.  Often I can hear without having to look at the speaker’s face.

My hearing with the CI is not full hearing, and I never expected it to be, but it is so far removed from what I had before. Now when I don’t have any hearing gadgets in I find it very, very difficult to cope and wonder how I got through the day.  Probably because there was no other choice and you just keep battling on.

So, one year on, a success story. I’m extremely grateful to have this implant and full of admiration for the skill and talents of the Sunnybrook cochlear implant team, for MED EL engineers, and of course for Graeme Clarke the man whose team invented the cochlear implant