[nfb-db] About This Group List

[Shadow Wolf]

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~*