[nfb-db] About This Group List

Cherifields at aol.com Cherifields at aol.com
Fri Mar 21 00:24:24 UTC 2014


Hey Delcenia, I enjoyed hearing of your life's story.  
Before now it seemed that I was getting bits and pieces of  different list 
members questions without seeing both conversations or maybe I  missed the 
first ones.  I wasn't particularly interested in small bits and  pieces that 
made little sense unless you were the one it was directed at.   But the 
stories of each life and how we cope and what our expectations are for  the 
future are very interesting to hear.  And maybe we can have some  impact on one 
another in some way.  
I think you were fortunate to have been able to drive.   It seems like such 
a necessity today.  I have never been able to  drive.
What kind of work are you interested in?  I missed that  post of your 
question.  
I can't blame you for wanting to spend your time visiting your  family.  
They should be the most important thing in your life.  
I'm from Florida.  I live on an island 3 miles wide and  eleven miles long 
called Amelia Island.  It was named this from the Spanish  King Ferdinan 
after his daughter Amelia.  The biggest city is Fernandina  Beach.  
Blessings to you,  Cheri
 
 
In a message dated 3/20/2014 12:27:53 P.M. Pacific Daylight Time,  
delcenia at prodigy.net writes:

First  let me say hello to everyone on this list and happy belated birthday 
to  Trish. To those that do not know me which is most of you. My name is  
Delcenia and I live outside of Cleveland, ohio area. I am a little new to  
this list  as of September 2013. Welcome Shadow. I do not normally  respond 
to anything other than the question regarding the voting issues  because I 
do 
not personally know any of you. After reading the last thread  I am 
compelled 
to say something.

I begin to wear one hearing aid at  the age of 10 in my right ear.   Maybe 
10 
or 15 years later I  needed to wear two hearing aids in both ears. Now I 
only 
wear one hearing  aid in my left ear. I was diagnose with RP at the age of 
21.
Many years  later I was told I had Usher Syndrom 2In 2005 I was told I have 
MS. . I  never had balance problems. I drove a car until I was around 28.  
I  
have always excepted whatever condition I was dealt. however, I   never 
place 
myself into a category until recently. It was not because I  did not accept 
it, it was I felt like I did not belong because my  situation was unique 
and 
never heard any one else with similar problems. I  say this because until I 
joined this list I did not know you all exist as  far as having similar 
problems. Darlene I also enjoyed playing cards and  once I learned braille 
from Hadley I could still play just not as fast as  I use to.  One of my 
question is, how did you and others get to go to  HK? Now after turning 50 
on 
December 31, 2013 and my situation is getting  worse.   I want to continue 
to 
take charge of my life.  I  also want to work and this has been a 
challenge. 
I had place a question on  this list back in January 14 and no one 
responded. 
Maybe I am using this  list the wrong way as far as trying to post a 
question 
or comment. At the  time I was doing a 3 day assessment to see if call 
center 
setting would  work.  I had post a question looking for suggestions on how 
to 
handle  the setting that I had at the time.

Could some of you when responding  or posting say what state you are from 
so 
that I  and others would  know. Personally, I think this list is a good 
idea. 
I have learned a lot  from all of you since September 2013.   I hope to 
meet 
all of  you one day. Unfortunately, it will not be the National Convention 
this  year in orlando. My oldest granddaughter who live in North Carolina 
turn  10 on July 3 and I want to spend time with her and my husband's 
family  
reunion is in Detroit the same week. I will be stretching myself across  
the 
border that week.

Meanwhile, Anna Trotman, I am grateful for  the I Can Connect program 
(ICCP). 
I am learning to use my IPAD, Iphone and  Braille Display.  I can not wait 
for the training to began again.  Meanwhile the internet and Hadley has 
been 
a great tool for  learning.

So keep on keeping on everybody and remember with a little  determination  
we 
can accomplish a  lot.

Delcenia
-----Original Message----- 
From: Darlene  Laibl-Crowe
Sent: Thursday, March 20, 2014 10:51 AM
To: 'NFB Deaf-Blind  Division Mailing List'
Subject: Re: [nfb-db] About This Group  List

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
>
>
>
>
>  _______________________________________________
> nfb-db mailing  list
> nfb-db at nfbnet.org
>  http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org

--
*~Shadow  Wolf~*


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