[nfb-db] Usher 3

[Delcenia Brown]

Hey Darlene,

It is amazing the things we do with our children. Yes, I did the same things 
with my younger son when he was younger. He is now 18 years old and 
determine that he will play pro baseball. The beauty is he will always 
remember mom playing catch with him.  Yes my husband did things with him but 
we both would always apreciate the things we did.
smile
Delcenia
-----Original Message----- 
From: Darlene Laibl-Crowe
Sent: Friday, March 21, 2014 11:33 AM
To: 'NFB Deaf-Blind Division Mailing List'
Subject: Re: [nfb-db] Usher 3

April, I would go to a specialist who is connected to a teaching
university...soemthing like the Eye Institute.  They would be more
knowledgeable about Usher.  I had heard about Usher in the late 90s and my
brother and I participated in the Boys Town Usher Research by donating
samples of our blood.  My sister also contributed but she doesn't have
Usher; but we were hoping this would help the researchers do some ruling out
of certain genes.  But I was never diagnosed by a professional to have
Usher.  So when I returned home from HKNC, I went to an eye specialist
through the Eye Instite and the University of Florida.  They diagnosed em
with Usher Type 2.  However, they could only 'assume'.  Since I already had
my blood sample in research, they did not see a need to do a genetic
counseling.  They were going to contact Dr. Kimberling and his team and find
out more about our blood samples.  But we haven't heard a word and that has
been since November 2011.

>From what I understand they can only diagnosed by using our symptoms.  Who
knows?  But I could be wrong because I am going by information that I
received in late 2011.  I do go to a retina specialist once a year for eye
care and a low vision specialist to be sure that I am on top of the latest
technology all paid for by the blind services here because I am a client
with vocation goals.

I only have vision and hearing issues.  I am very healthy...as per my recent
physical examination.  (smile)  I do get dizzy but they cannot pinpoint what
it is except that I have arthritis in my neck and my spinal cord is
narrowing and they also suspect that because it is hard for me to focus on
something, too.

I haven't been able to follow movement in a very long time even when I had
central vision.  I can remember when my youngest son was playing baseball he
needed to practice tossing a ball and catching...since I was the only
parent, I had to be the one to do that.  (smile)  I set up a box beside my
feet so when I threw him the ball...didn't have a problem throwing it at
him, I could see him...but he couldn't throw it to me, he had to roll it in
the box by my foot so I could get it and throw it back to him.  Well,
sometimes he would forget and throw it and I would throw up my arms to
protect my head and yell out!  LOL  Then he would cracked up laughing so
hard and then I had no choice but to laugh with him.  I think he did it
deliberately just so I would react!  LOL

I miss my boys!  They are both grown and doing well...live out of town...one
out of state in West Virginia!  Too far!  I was surprised when he did that.


Anyway...life goes on.

(smile)
Darlene

-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of April Brown
Sent: Friday, March 21, 2014 11:16 AM
To: nfb-db at nfbnet.org
Subject: Re: [nfb-db] Usher 3

Hi Darlene,

      Thanks for those sites.  There is so much to know!

        I'm learning braille.  Have been working on it since November.  I
tried ASL in college a few decades ago.  Not luck there.  I'd get sea sick
from the motion.

Hi Shadow Wolf and Darlene,

     I do have multiple system issues.  Left eye has always been blind, left
ear with little hearing, no left kidney, heart rhythm issues, balance and
bumping into things, spinal problems, and a few more.


Now, thanks to your comments and the Usher 2 posts, I wonder if I should see
a geneticist instead of trying to get an eye specialist to diagnosis me?
Maybe in a year or two.

Have a great day!

April Brown

Writing dramatic adventure novels uncovering the myths we hide behind.
>



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