Do not worry very few are elected having both!
You probably have "only" RP.
FFB was recommending DHA+ 15000 Units of Vit A Palmitate for the 2 first years
after being diagnosed, then Vit A only. I did Vit A since 1994.
Retrospectively, I should have started Ocular nutrution earlier. Currently,I
"oscillate" between Ocular Nut and Eye rite+15000 Unit Vit A.
Key is: Keep you moral high, Get the right food for your eyes.Not too much Vit
E.
Good Luck! Keep in mind you are not alone!
J-L


naresh krishna <chnareshkrishna@...> wrote:
Hi Mani,

I am naresh from andhra pradesh , india. Presently my ageis 26 right now i am
working as software engineer. I came to know that i recently diagnised with RP
in the year 2003, right now my vision is good by poor side vision. As you said
that ur visison is not good and hearing pblm.. Do the same pblm comes for me
also. Usher syndrom means what ? is same as like RP. I afraid that what happens
in future to me . As my carrier will spoil or not. Please reply me. Right now i
can manage my self with good vision. I dont know that i will loose my vision in
future.


Pretot <jlpretot@...> wrote:


--- In retinitispigmentosa@yahoogroups.com, mgiyer <no_reply@...> wrote:
>
> Hello:
> My name is Mani G. Iyer and I suffer from Usher Syndrome Type II. I
> have been diagnosed about 20 years ago. I am an Indian living in the
US
> for the past 22 years.
> I am a software engineer by profession and of late, I am finding it
> extremely difficult to work. My eyesight has deteriorated a lot over
> the past 2 years and my hearing is slowly getting worse.
> I would like to know how you guys cope with this situation. Ideally, I
> would like to be able to work till I can't think any more. Is that too
> far fetched? Sometimes I feel so frustrated that I want to resign and
> go on SSD but I need the money to put my children to college and pay
> the mortgage.
>

Hey, Mani,

1- I have been in the US for 23 years, I have being diagnosed
with RP about 13 years ago. In fact I got Ushler but ENT and Ophtalmo do
not work together very well My hearing started to degrade 12 years ago.
It is my third set of hearing aids. I wish technology could help the
same way for RP.

2- I forgot I am an Electrical, Electronics and Software Engineer
in a large Company. Software Is great job for Ushler because you enclose
yourself face to the screen and see only the screen. Keyboard is a
challrnge sometime.

3- The last 7 years it has been a daily troubleshooting of my
body. One day hearing was my bug of the day next day it was my vision.

4- I recognized myself when you say "work until I cannot
think". .. because our fear is to become a CPU with no I/Os. I am
convinced that this statement will get you jump because you understand
deep what it means.

5- My left eye quit on me 3.5 years ago., still light and colors
but white sheet when reading. You have to start talking about your
illness when you cross your boss's boss in the hallway and do not
see him. You hang on daily life. You goal is your kids college (done it
-3/3) then ensure your long term.

6- You internal frustration ends up having impact on your
relationships with your environment.

7- I still travel a lot , moving forward all the time, maybe
afraid to slow down. Not easy.

8- During these 13 years of daily troubleshooting, I tried
different things. Recently, I concluded that feeding the Macula was
important and used "premium formula for macula nutrition". I
regret not having done it before. Designed for Macul degeneration I was
concerned but it seems to help "slowing" down. However, it is
very difficult to conclude.

I'd pleased to communicate privately if this can help you.

J-L

> Thanks,
> mani
>

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