Re: How Many Deaf-Blind CI Users On This List?

[Guest guest]

Ilana,

Add me to the deafblind list. I was born with normal vision but a mild

hearing loss, due to Usher's Syndrome. The hearing started going later in

life, the vision loss began in my teens. I am now working my second guide

dog, Dreamer. Oh and I have the Nucleus 24.

*---* *---* *---* *---* *---*

You can't solve a problem with the same thinking that created the problem in

the first place.

--Albert Einstein

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Dear , how did you cope as a teen with mild hearing loss while losing your

hearing, I think it must be difficult if that person was a speech reader. At

what age did you receive your CI? I was 22 when I lost all my hearing and was

Deaf for 10 months before receiving my 1st CI Nucleus 24M. I was born with

Hydrocephalus which caused my blindness, other challenges and that challenges

caused my deafness. I received my Nucleus Freedom beginning of May, 8th May 06.

Ilana Deaf-Blind N24M 8/5/00 N24C Advance 8/5/06

[Guest guest]

Ilana,

I have the same DeafBlindness as , that being Usher, though its onset

is different. I had normal sight at birth and the first symptoms began as a

small child. Now I have poor light perception. Not sure what my hearing was

when born, though I was slow to learn to talk. Now I have bilateral CIs. I

have the N24 on my right side and the Freedom on my left. I am on my second

dog guide, Telly.

[Guest guest]

Ilana,

Well when I was younger I coped because I didnt know better. LOL My

hearing loss was mild and eharing aids were very effective. I was uhm, lets

see, oh lordy, old, when ( got the CI, at age 51.

*---* *---* *---* *---* *---*

The secret of a good sermon is to have a good beginning and a good ending;

and to have the two as close together as possible.

-- Burns

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

My hearing was very bad even with a hearing aid for years but when I'd check on

the internet re cochlear implants it seemed to me that they were primarily to

provide some sense of sound to totally deaf people and did nothing for speech.

I guess I looked in the wrong places <g>.

I wasn't aware of what they could do until last year at our (here it comes) 60th

high scholl reunion when I ran into an old classmate with an implant new that

spring and who told me how great it was that they would do anything for speech

recognition. I immediately asked my doc for a referral and started the process.

I'm truly grateful that I ran into him or I'd still be deaf as a post. By that

time my wife had to write anything she wanted me to " hear " most of the time. I

could get a little bit via lipreading but was never profficient at that.

I thought the waiting for insurance approval between steps and all the steps

would never end but I finally got the implant in November and activation in

December. It's been a terrific experience and I'm happy as a clam.

Virg

Re: How Many Deaf-Blind CI Users On This List?

Ilana,

Well when I was younger I coped because I didnt know better. LOL My

hearing loss was mild and eharing aids were very effective. I was uhm, lets

see, oh lordy, old, when ( got the CI, at age 51.

*---* *---* *---* *---* *---*

The secret of a good sermon is to have a good beginning and a good ending;

and to have the two as close together as possible.

-- Burns

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Ilana,

Hi,I am deaf-blind CI user. And also I am Usher syndrome. I found out

that I was usher syndrome at 11 yrs old. I was born deaf and blind. I

recieved CI at 13 yrs old. My CI is Nuclues 22. And also hopefully I

would recieve my special field expander glasses to help see me better

alittle bit as soon. Colleen

>

> Hi, I'm happy to find and learn more from other Deaf-Blind CI

Users or anyone on this great list - I love to learn! When did you

receive your CI and what your CI's name?Were you born Deaf-

Blind? Ilana Deaf-Blind N24M 8/5/00 N24C Advance

8/5/06

>

[Guest guest]

Thats great news, Virg. The even better news, is that there is

probably more improvement there for you still. Are you still having

regular mappings? Can you understand/hear most of the TV now, without

subtitles? What about the phone, have you tried that, or music?

Ted F.

> I wasn't aware of what they could do until last year at our (here

>it comes) 60th high scholl reunion when I ran into an old classmate

>with an implant new that spring and who told me how great it was

>that they would do anything for speech recognition. I immediately

>asked my doc for a referral and started the process. I'm truly

>grateful that I ran into him or I'd still be deaf as a post. By

>that time my wife had to write anything she wanted me to " hear " most

>of the time. I could get a little bit via lipreading but was never

>profficient at that.

>

> I thought the waiting for insurance approval between steps and all

>the steps would never end but I finally got the implant in November

>and activation in December. It's been a terrific experience and I'm

>happy as a clam.

>

> Virg

[Guest guest]

Ilana,

I'm also deafblind and have bilateral CIs. I received my first CI in

December of 2004 and the second in February of this year. I was born blind

due to retinopathy of prematurity and started losing my hearing at age 3

because of prematurity, ototoxic drugs given to me while in the NICU,

jaundice, childhood ear infections and years of untreated allergies --

although my former hearing aid audi thinks my hearing loss may be

congenital. I started wearing hearing aids at age 15 for a moderately-severe

loss even though they were recommended for me at age 3. By age 25, my loss

was severe-profound where it has remained ever since receiving my CIs.

Left ear - Nucleus 24 Contour Advance with 3G

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

[Guest guest]

Ilana,

Just a P.S. to my last message. I have the N24C in my left ear and the

Freedom in my right.

I'm totally blind and am currently working with my second Leader Dog, a 10

year old yellow lab named Tigger.

Left ear - Nucleus 24 Contour Advance with 3G

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

[Guest guest]

Hi, All:

I am legally blind and got my CI in 1988. Does that mean I am not exactly

deafblind anymore?

Nan

Implanted with N22 in 12/88, activated 1/89

Legally blind most of my life

Totally deaf for part of my life

Nan Rosen

_www.rosetwig.com_ (http://www.rosetwig.com/)

[Guest guest]

Coming out of lurk

I am deafblind. Born 1 month premature and have had profound hearing

loss and severe myopia since birth.

Growing up my hearing impairment was the worse of the 2 since I could

get around on a daily basis with coke bottle glasses <snick>.

I got implanted May 27/04, activated June 30/04 with the AB Auria. Two

years later my vision is now the worse of the 2 since I can hear about

88%.

I've now " accepted " the use of a white cane (long struggle there). Only

regret is not doing the CI surgery sooner

Rustycyot

[Guest guest]

Nan,

It's funny you should ask this question. When I visited the former director

of my local deafblind center, she asked me with a chuckle how it felt not to

be deafblind anymore now that I had bilateral CIs. At first the question

caught me off-guard, but the more I thought about it, the more it made

sense. I told her it feels GREAT and that I now consider myself a blind

person who can hear. Of course, when my CIs are off, I'm totally deafblind,

but at least for me, that is neither here nor there unless there is a

special circumstance which warrants special attention because I don't have

my processors on.

Left ear - Nucleus 24 Contour Advance with 3G

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

[Guest guest]

I have bilateral implants. However, I am totally deaf and blind without

my processors. Yes, you are still deaf and blind. Keep in mind, the

cochlear implant is not a cure for deafness. However, it is a good remedy.

Larry

Re: How Many Deaf-Blind CI Users On This List?

> Hi, All:

>

> I am legally blind and got my CI in 1988. Does that mean I am not

> exactly

> deafblind anymore?

>

> Nan

>

>

>

>

> Implanted with N22 in 12/88, activated 1/89

> Legally blind most of my life

> Totally deaf for part of my life

>

> Nan Rosen

> _www.rosetwig.com_ (http://www.rosetwig.com/)

>

>

>

>

[Guest guest]

Hi Ash and :

I have been using the same implant I received in 1988 with no problems. I

have had one speech processor go haywire, but the internal implant is still

going strong...knock on wood.

Deaf, hard of hearing or not??? I usually tell people I am hard of hearing

when I wear the speech processor and totally deaf with it off. That they

understand.

I think the official definition of " profoundly deaf " is based on what you

hear with your aids and processors off.

Nan

Hello Nan,

I have a question for you. are you still using the same implant from

1988? Have you ever had a failure? I guess I am just shocked that it

could last that long (then again I have had no luck with my internal

part lasting any more then 3 years. )

Just curious.

Ash

Rosensweig

Nan Rosen

_ww.rosetwig.com_ (http://www.rosetwig.com/)

[Guest guest]

Nan,

I agree. When I sent e-mails to each of my professors introducing myself, I

indicated that I was a blind and hard of hearing student and made no mention

of my CI. This is also what I do in normal conversation as well as it is

simple and easy for people to understand.

Left ear - Nucleus 24 Contour Advance with 3G

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06