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Unread 01-17-2008, 12:56 PM   #1 (permalink)
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Talking new, have usher's syndrome.

i've been lurking forever. i'm new, from nj, proficiently deaf in left ear, moderate/severe in right. i was diagnosed with ushers' syndrome early last year. my hearing has just faded away slowly over time. i do not wear aids, i've been speech reading all of my life mostly and learned asl and see.
i'm in a relationship (partner is hearing) and i'm very happy. just looking for support, advice, thoughts.
i work in the hearing world (only deaf employee) and that can get frustrating!

that's it for now.
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Unread 01-17-2008, 02:31 PM   #2 (permalink)
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I will be (so I am told so far) that I will be only deaf student in classes I am going into for clinical lab technician in the fall. I know where you are coming from. Hope everything is going well for you! Welcome to AD! Stephanie
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Unread 01-17-2008, 04:58 PM   #3 (permalink)
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Welcome to AD -- there are many members on AD'ers that has Ushers Sydrome. Enjoy your stay here!
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Unread 01-17-2008, 05:22 PM   #4 (permalink)
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I also have Usher's Sydrome... It is no big deal... only problem is that i cannot walk outside during the night..... thats all... i learn to look both sides and up and down... you have to train yourself.. you will be fine...
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Unread 01-17-2008, 06:41 PM   #5 (permalink)
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here and enjoy AD!
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Unread 01-17-2008, 08:04 PM   #6 (permalink)
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to AD! Hope you enjoy it here.
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Unread 01-18-2008, 09:45 AM   #7 (permalink)
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I also have Usher's Sydrome... It is no big deal... only problem is that i cannot walk outside during the night..... thats all... i learn to look both sides and up and down... you have to train yourself.. you will be fine...
What kind of information did you receive when you were diagnosed with usher's? How is your hearing? Vision?
I don't know anyone with Usher's personally, I do alot of reading on it and just wanted to get some support or advice.
Do you work as well?
Thanks.
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Unread 01-18-2008, 08:32 PM   #8 (permalink)
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Welcome to AD!

I'm totally blind (from birth) and had progressive hearing loss since age 3 (although my former hearing aid audiologists think it may be congenital).

My blindness was caused by ROP (retinopathy of prematurity) and my hearing loss caused by a number or factors including prematurity, ototoxic drugs given to me while in the neonatal intensive care unit, childhood ear infections, antibiotics and years of untreated allergies.

Hope you enjoy your stay here! Anytime you'd like to chat feel free to send me a PM anytime.

P.S. If you are looking for resources, let me know. I have plenty of information I can share with you -- one of them being an e-mail list for people with Usher's.
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Unread 01-18-2008, 08:53 PM   #9 (permalink)
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Hello! I'm in the process in finding out if I truly have Usher Syndrome type 2. I currently have bad night vision and some tunnel vision. And it is getting worse. I have been looking for a specialist to confirm this.. I'm in the process of making an Dr appt. to confirm it.

So I am totally understand this situation, even though some people think it is no big deal. I do!! So I'm open to share with you about Usher, even though they have not truly diagnose me with it yet.

Welcome to AD.
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Unread 01-20-2008, 03:28 PM   #10 (permalink)
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Quote:
Originally Posted by deafjellyfish View Post
i've been lurking forever. i'm new, from nj, proficiently deaf in left ear, moderate/severe in right. i was diagnosed with ushers' syndrome early last year. my hearing has just faded away slowly over time. i do not wear aids, i've been speech reading all of my life mostly and learned asl and see.
i'm in a relationship (partner is hearing) and i'm very happy. just looking for support, advice, thoughts.
i work in the hearing world (only deaf employee) and that can get frustrating!

that's it for now.
I have several friends who get help through NJADB and HKNC. I think you need to go to NJADB first before you go to HKNC. They both are very good organizations.
New Jersey Association for Deaf and Blind New Jersey Association of the Deaf Blind
Helen Keller National Center for Deaf Blind Youths and Adults About HKNC
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Unread 01-22-2008, 09:40 AM   #11 (permalink)
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Originally Posted by Hear Again View Post
Welcome to AD!


P.S. If you are looking for resources, let me know. I have plenty of information I can share with you -- one of them being an e-mail list for people with Usher's.
yes, i am looking for resources and any information you may have on ushers' syndrome. that would be helpful! and appreciated.
i would like to be on the email list for people with usher's as well.

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Unread 01-22-2008, 11:59 AM   #12 (permalink)
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Originally Posted by deafjellyfish View Post
yes, i am looking for resources and any information you may have on ushers' syndrome. that would be helpful! and appreciated.
i would like to be on the email list for people with usher's as well.


Did you check out General Health for threads related to "usher syndrome" ?

http://www.alldeaf.com/general-health/


Btw, welcome to Alldeaf and enjoy your stay here ...
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Unread 01-22-2008, 12:46 PM   #13 (permalink)
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Originally Posted by Angel View Post
Did you check out General Health for threads related to "usher syndrome" ?

http://www.alldeaf.com/general-health/


Btw, welcome to Alldeaf and enjoy your stay here ...
no i didn't but i will. thanks for the welcome and stuff!
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Unread 01-22-2008, 01:02 PM   #14 (permalink)
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~*WELCOME*~
TO ALLDEAF!!!
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Unread 01-23-2008, 12:34 PM   #15 (permalink)
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~*WELCOME*~
TO ALLDEAF!!!
thank you for all the welcomes!! much appreciated!
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Unread 01-23-2008, 12:43 PM   #16 (permalink)
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Originally Posted by deafjellyfish View Post
What kind of information did you receive when you were diagnosed with usher's? How is your hearing? Vision?
I don't know anyone with Usher's personally, I do alot of reading on it and just wanted to get some support or advice.
Do you work as well?
Thanks.
Usher's sydrome runs on my mother s side... i was 9 yrs old when eye specialist tested me and told me that i have it... and suggested me to go to Blind school to train myself... I did not go.... i learned on my own.... now i am 63 yrs old... now i cannot walk in the dark especially in the night.... so i have dim light every room so i can find my way around...use my vision more than normal people do....

I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...
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Unread 01-23-2008, 08:25 PM   #17 (permalink)
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I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...[/QUOTE]

were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
do you sign?
your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
thanks for sharing!
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Unread 01-23-2008, 09:50 PM   #18 (permalink)
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I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...
were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
do you sign?
your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
thanks for sharing!
[/QUOTE]

No... I was born HOH... my parents were deaf...I love my part time job working with Domestic Violence...it is big challenge...
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Unread 01-23-2008, 10:17 PM   #19 (permalink)
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Originally Posted by deafjellyfish View Post
I worked.... at different jobs.. they even did not know i had it..... things went normally..... now i work part time with Domestic Violence for deaf... they know about my vision... they come and pick me up if it needs to be there during night... NO problem at all...
were you late deafened? i lost my hearing when i was 9 in my left ear, it had been gradual in my right over the years. my vision has deterioated as well. i am having alot of trouble driving at night and seeing in the dark, if i go for a walk or something. or if the house is completely dark.
i turned 40 a few months ago and i'm noticing changes more since i've gotten slightly older. its upsetting, but a fact of my life.
do you sign?
your job must be tough at times, working in domestic violence. i wanted to get a job at the deaf school here in my state, but there had been a hiring freeze and its been impossible to get in.
i would love to work with the deaf/blind, but i don't even know where to begin to find work in that field.
thanks for sharing!
[/QUOTE]


I also don't drive at all at night. I will be turning 34 in Feb. I have notice trouble when I was younger and I thought it was because I wore glasses. Like I said I have not be diagnosed yet, but even though I'm not the type of person to diagnose myself...... I feel this is what I have.......I hope Aleser doesn't mind me mentioning his name. I'm sure that he would have the best information for you on this. He has helped me a lot in my circumstances.
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Unread 01-23-2008, 11:09 PM   #20 (permalink)
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I hope Aleser doesn't mind me mentioning his name. I'm sure that he would have the best information for you on this.
In regards to jobs working with people who are deafblind? (sorry, the topic is a little confusing to work through)

Uh, if you (by this I mean the original poster) want to throw a PM my way, I could probably compile a few links for you when I get the time.

If you mean general questions about deafblindness, the above still applies. I'm not an expert on Usher syndrome, but I can try and be of help.

In any case, welcome to alldeaf!
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Unread 01-23-2008, 11:15 PM   #21 (permalink)
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I also don't drive at all at night. I will be turning 34 in Feb. I have notice trouble when I was younger and I thought it was because I wore glasses. Like I said I have not be diagnosed yet, but even though I'm not the type of person to diagnose myself...... I feel this is what I have.......I hope Aleser doesn't mind me mentioning his name. I'm sure that he would have the best information for you on this. He has helped me a lot in my circumstances.

I stand corrected Aleser is a "She" not "He"
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Unread 01-24-2008, 12:31 PM   #22 (permalink)
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Quote:
Originally Posted by Aleser View Post
In regards to jobs working with people who are deafblind? (sorry, the topic is a little confusing to work through)

Uh, if you (by this I mean the original poster) want to throw a PM my way, I could probably compile a few links for you when I get the time.

If you mean general questions about deafblindness, the above still applies. I'm not an expert on Usher syndrome, but I can try and be of help.

In any case, welcome to alldeaf!
pm? is that instant messaging?
i would be happy to have any information you have on usher's or blind/deaf employment.
thank you for the welcome btw.
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Unread 01-24-2008, 03:48 PM   #23 (permalink)
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pm? is that instant messaging?
i would be happy to have any information you have on usher's or blind/deaf employment.
thank you for the welcome btw.
Private messaging is like.. emails but between alldeaf members only. To find your PM box, scroll all the way to the top of the screen and look in the upper righthand corner. For example, mine says

Welcome, Aleser.
You last visited: Today at 12:39 PM
Private Messages: Unread 0, Total 30.

when you see that, click on the "private messages" icon. Then, on the "control panel" bar on the side, you can select 'send new message' to send a PM to one (or more) people.
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"She thinks... she can make people do what she wants or needs, what is right, by the sheer force of her own talent, not by forcing them... she can teach them and persuade them... that they'll catch it from her. This is still faith in their rationality, in the omnipotence of reason. The mistake? Reason is not automatic. Those who deny it cannot be conquered by it. Do not count on them."
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Unread 01-24-2008, 09:21 PM   #24 (permalink)
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Hello and welcome to Alldeaf! Hope you'll hang in there despite the fact that you're the only 'deaf' employee there. Also, enjoy your stay here in AD as well.




~RR

(thank you Aleser for your explanation and help-- )
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Unread 01-25-2008, 12:23 PM   #25 (permalink)
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Hello and welcome to Alldeaf! Hope you'll hang in there despite the fact that you're the only 'deaf' employee there. Also, enjoy your stay here in AD as well.




~RR

(thank you Aleser for your explanation and help-- )
thank you for the welcome, and yes, i do believe i will stick around for a bit.
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