[nfb-db] About This Group List

Thu Mar 20 14:51:22 UTC 2014

First, Shadow, I want to say 'AWESOME!' about the CI and getting your best
ear back.  Yes, I understand what you say about one ear being better than
the other.  Mine is the right ear.  I have heard many positive things from
CI wearers as I have many friends who have them.  I found out when I began
to lose more hearing that I was not a good candidate for CI because I could
still hear with a hearing aid...so for now, I am bi-lateral hearing aid
user.  One day I might have to become a CI-user but for now I do what I do.

I got new HAs about three weeks ago and they are great along with the
Assistive listening Devices I got with them!  Unfortuantely there are some
areas that need to be worked out and that is the issue of background noises.
Sigh!  It will get better as I know from experience technology is improving
all the time!

I really enjoyed Bernie's class, too!  What did you do your presentation on?
Mine was called 'Laugh Out Loud' and everyone had a blast.  I recently used
it for a speech at my local Lion's Club for St Patrick's Day and the
audience loved it.  Everyone had a great time laughing!  It isn't stand up
comedy, just pure laughter which is good for the heart, mind, body and soul!

Did they have the leadership class while you were there?  I took that class
because I wanted to know the 'right' way to advocate for myself.  We learned
a lot in that class and it has helped me tremendously with all I do.  

Well, gotta go, take care of yourself!
(smile)
Darlene

-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of Shadow Wolf
Sent: Thursday, March 20, 2014 10:37 AM
To: NFB Deaf-Blind Division Mailing List
Subject: Re: [nfb-db] About This Group List

Hi Darlene,
Nice to meet you. I was at HKNC for 11 months. I took full advantage of the
training they offered there. I took up whatever classes they offered besides
just learning Braille, Technology, ASL-TSL-Haptic Signs and Independent
Living. I even took Sr. Bernie's presentation class last fall prior to her
retirement last Dec. after 34 or 35 years she worked there. It was a great
learning experience.

I first started wearing hearing aids in both ears at 6 years old. I lost my
hearing as a toddler. I was told I had RP during my early teens once I was
diagnosed. But I was still driving up until I was 24. Then later on, around
in 2010. I was told I had Usher's type-2. I was confused about that, because
Usher's also affects balance. Whereas I do not have balance issues.  In
fact, I think most people with Usher's type-2 do not have balance issues.
On New Year's eve 2000, I was involved in a really bad car accident. 
Although I was not a driver but a passenger. I suffered head trauma where I
also suffered an ear fracture in left side. I lost my hearing in that ear 2
days later. For 9 and half years I was hearing with only 1 ear, a hearing
aid. My left ear was my better ear then. If you are a right hand person,
writing with a right hand, it was like losing your right hand and trying to
write with your left hand. Same with my hearing after that accident. I had
communication issues and kept to myself during most of that time. Until one
day in fall 2009, I got lucky and became a candidate in my state to receive
a Cochlear Implant. After all is said and done. After 3 months of my brain
trying to adjust to my CI and hearing in my left ear again. My left ear
where my CI is, became the better ear once again. I now understand people
best with my CI. It is loud and clear. The CI boosted my communication
skills and gave me a great deal of confidence. I am now happy that I
received the CI and I hold no regrets about it. It is medically amazing that
the CI can restore your hearing if someone suffered dramatic hearing loss
from an ear fracture. I admit I was skeptical at first when I first sat down
with CI specialists prior to my surgery. I didn't think it was gonna work.
But I was wrong. The CI did work for me.

--S.W.

On 3/20/2014 4:49 AM, Darlene Laibl-Crowe wrote:
> Good morning, Shadow!
>
> Welcome to the NFB DB Division.  I, too, have RP and am HOH.  I wear 
> bi-lateral hearing haids.  But I did not grow up knowing that I had 
> RP.  I found out as an adult at the age of 28 and had to give up 
> driving.  I was able to see to read print and see people's faces to 
> read lips to accommodate for what I could hear for about 22 years after I
was diagnosed with RP.
> That means when I turned 50 almost 6 years ago, I struggled with what 
> to do as I could not longer see to do things that I kept doing as a 
> sighted person.
>
> Since I grew up wearing hearing aids, I never considered myself a 'deaf'
> person and can remember someone telling me 'oh, you're deaf' when I 
> told them I wore hearing aids.  I quickly responded and told them 'oh, 
> no, I can hear something'.
>
> So six years ago when I began to struggle with vision loss, I finally 
> met many who were dealing with similar issues and I recognized that I 
> was Deaf-Blind.  Once I was able to define this, I soon went to Helen 
> Keller National Center (January 2011 -- September 2011) where I 
> learned much about my specific needs.  HKNC is a great place to learn 
> all you can about resources and gives a great sense of confidence.
>
> Since returning home, I have continued to learn and made great progress.
> How long were you at HKNC?  Also, if you are home, are you learning 
> Braille through Hadley's?
>
> That was how I completed my Braille...through Hadley School for the Blind.
> The Braille teacher at HKNC was very good and so glad I got the 
> beginnings of it there and the teacher at Hadley was also very good.  
> I use Braille in my everyday life but I am not that fluent because I 
> have not made myself sit and read as I should.  Need to get myself 
> back on track there.  I use Braille in business meetings, identifying 
> things in my home and I also use it often when playing cards.  My 
> family loves to play canasta and I missed playing it.  Now I can play 
> it again!  (smile)  My sister (who is sighted) and I always play 
> partners against our spouses and we win the majority of the time!
>
> Take your time learning Braille.  It can be daunting as times but very 
> rewarding when it is completed.
>
> Anyway, This list is a good source for information and sharing.  I do 
> have a question...you state that you have been Deaf-Blind all your 
> life.  When did you find out about your RP?
>
> Have a Thrilling Thursday!!
>
> (smile)
> Darlene
>
>
>
>
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--
*~Shadow Wolf~*

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