[nfb-db] April: Types of Usher

[Darlene Laibl-Crowe]

Hi, Cathy, this is Darlene from Florida.  Interesting that you say that
about Vitamin A...my eye specialist was also for me taking Vitamin A and he
also recommended 20mg of Lutien a day.  But I can only take 8,000 units of
the Vitamin A because it has fish oil in it and it makes me break out in
hives if I double up on it.  The Lutien is good, too but I also take Alpha
Luproic Acid which is good for the nervous system, this was recommended by
my primary care physician.  I agree they aren't that expensive.  The Alpha
Luproic Acid has to be special ordered and can be done at the pharmacy
counter at Walmart.  I want to conserve what vision I have left.  

How do you use the computer, Cathy?  I use High Contrast black which makes
it very much easier on the eyes.  Black background with white text and I use
Zoom Text.  I have it with speech.  I use the magnification on ZT and I
change the pointer, cursor, focus box and use the smooth font and in bold.
Plus I also use a LED screen which keeps light from shining directly into
the eyes.  It shines from the sides.  I have a laptop but it isn't LED and
it causes big time eye strain.  

I don't know what I do without technology.  I use it heavily to read, write
and much more!  

(smile)
Darlene

-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of Catherine
Miller
Sent: Friday, March 21, 2014 3:21 PM
To: nfb-db at nfbnet.org
Subject: [nfb-db] April: Types of Usher

April, congratulations on your initiative in reading everything you can
about Usher Syndrome.  I did the same thing when I could read print, and
information in print is very plentiful.  I was convinced based on my reading
that I had Usher 3; but recently I went to see an ophthalmologist at Baylor
College of Medicine in Houston who assured me that I have Usher 2.  I am
currently getting to the bottom of it by paying for genetic testing, which
will not only answwer that question once and for all, but results will
indicate which experimental trials I qualify for.

To answer your question, though:  Based on everything I've learned, RP is
predictably unpredictable.  I am 58 years old and have lost the ability to
read print within the last year or two.  Having learned to read braille four
times during my life, I have finally begun using it consistently and relying
upon it in the course of my daily living.  Those previous attempts were not
wasted, though.  The made it infinitely faster and easier the final time.
Every moment I spent with the dots under my fingers was useful in preparing
me for the present in which I thoroughly enjoy reading my favorite
publication, The National Geographic, in braille every month from cover to
cover.

April, if you haven't already done so, I suggest you find a doctor who will
support you in the use of Vitamin A Palmitate.  I have taken 15000 Units of
it daily for the last ten years.  When I started taking it, I had lost all
but light perception in my left eye.  The eye had turned so it faced to the
outside, because there was no vision to keep the muscle working to hold the
eye centered in front.  After a few weeks of Vitamin A therapy, I regained
some vision in my left eye.

But the left eye was already turned outward, so the image out to the side
was superimposed on top of the image from my right eye, causing double
vision.  I sought out a surgeon who performs a particular procedure for
straightening the eye by shortening the muscle.  It is often done on
children who have this condition, call Strabismus.  After the surgery, I
regained depth perception, a very valuable thing to have!!  My left eye is
still straight, and I enjoyed the depth perception for many years.  But now
the disease has overtaken my ability to see anything but light perception.

In short, the Vitamin A therapy has provided me with several additional
years of useful vision.  Thee pills are not expensive, and the only
precaution I needed was to have a simple blood test every six months to make
sure the treatment was not damagine my uh, what is it?  Liver?  Kidneys?  In
any case, blood tested perfectly clean every time.  I am still using the
Vitamin A Palmitate and testing, because I find light perception to be a
very useful thing to have.

April and all who post here, thank you so much for spending time on this
list.  We do unbelievably important good for each other by sharing our
deafblind experiences.  No one else can really understand, and we are truly
a family here.

Cathy Miller

Sent from my iPad
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