[nfb-db] Usher 3

[Darlene Laibl-Crowe]

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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