[nfb-db] Usher 3

[Darlene]

Yeah they make good memories!
My sons are now 33 and 23

Sent from my iPhone

> On Mar 23, 2014, at 3:54 PM, "Delcenia Brown" <delcenia at prodigy.net> wrote:
> 
> 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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