[nfb-db] April: Types of Usher

[Shadow Wolf]

Hi Darlene,
I'm curious about the Alpha Luproic Acid. Does this help folks with RP? 
Lutein doesn't do much for RP sufferers. But I guess some people still 
take it regardless. I used to take Bilberry and Lutein a lot. As of now, 
there are clinical trials going on. Valproic Acid is said to help stop 
the progression of advance RP. But that has yet to be proven. And if 
proven, then it has to be approved by the FDA. That could be years away 
from now.

--Shadow

On 3/21/2014 1:03 PM, Darlene Laibl-Crowe wrote:
> 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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-- 
*~Shadow Wolf~*