Usher's Syndrome

christlovedeaf said:
I, myself, have U S. I didn't drive last 2 yrs now. My bf helping me alot with lot of things and does frustrate me by making feel like I giving him an extra load. But he never mind that at all. Even, I want to do things like groceries or whatever if he need me for do something for him, which I couldn't. He does not want me to think those things. Comparison, Okla City is easy for me to drive, but in Toledo, is hard, bec close in enviroment, not open like OKC. But I can't see at all at night. And yes, like Centrum vitamins that have lucient in it which slow them down, which doctor has told me to and correct, it does not cure at all and my brother has more serious than I have.
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Hey..got a question...my husband's ex fiancee was an alcoholic and my husband told her that she would need to stop getting drunk cuz the alcohol could cause the loss of vision to progress more rapidly. Is that true?
 
My deaf aunt has US or Tunnel(she cant see her side, below and above she has to turn her head to look/see her side, below and above) Her vision hasnt gotten worse, she is 50s now. She has 3 hearing children no trouble with visions, and 1 granddaughter neither, healthy hearing baby. I used to be babysitter her 3 kids, my cousins. Yea, I have seen her walking like no balance, she can walk in the dark and night time mostly holds under arm, slept overnight left light on. U know former USSR there has no good vitamins nor pills she can survive fine.
 
I know that It's common normal having balance troubles with deaf, HoH or other too? :):) So Hope you see doctor later and find out what is it! :):)
Good Luck
 
Dixie said:
Thanks for the post - I've not been taking the vitamins like I should but I plan on going to the drugstore later and get some. Just the thought of not being able to drive in my area would definitely leave me depending heavily on home health and what not to get stuff done. If I do get to that point I'll have to move into town in an apartment and walk my butt everywhere. Though I would rather live out in the country and have plenty of open space and at the same time be independent and go and do as I please.

I have a couple of questions though - how old are you know and how old were you when you were properly diagnosed? Did it progress rapidly for you or more slowly?
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when I was in Jr high. Not because of me. It's my brother at first. we discovered my brother couldnt see many things. So doctor referred all 4 (my brother and my 2 sisters and myself) to go to Dean A McGee Eye Institute and My brother and I have it, not my sisters. My brother more serious that time than mine, mine hasn't been serious at all and predicted mine going to get bad when I get into the 40s, but not totally. My brother is more serious than mine and right now I am like my brothers, but yet still not serious as his. He never drives, but I have till 2 yrs ago, stop driving. Its very slowly on both of us, not rapid.
 
shel90 said:
Hey..got a question...my husband's ex fiancee was an alcoholic and my husband told her that she would need to stop getting drunk cuz the alcohol could cause the loss of vision to progress more rapidly. Is that true?
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No, it is not true. But there are thousands different kinds of blindness, you wouldn't believe. As for U S, those cause by nerves burned by sunlight or welding, which with no protection to protect from blindess or anything sensitive by the strong light and also from family heritage. There are different causes of it. And they are still trying to find a way to cure it, which as of now, NONE. BOOHOO. But alcohol itself does not causes that.
 
Well sunday I might as well have been blind as I walked straight into a chair that I didnt see, lol. Too bad I couldnt use hangover as exscuse. :afro:

As for sunlight burning my retinas beyond use, I have been wearing sunglasses while outside on sunny days as well as those bright overcast days. This alone may help it slow down a bit, but I'm not going to rely on it completely. I guess those weekends spent outside in the sun for 8 hours a day for 3 days straight probably didnt do much for my sight, lol.

On a more serious note, it does scare me sometimes like the possibility of not seeing my daughter walk down the aisle (if she ever does) and other 'special' moments like that. I know I would not be physically missing it, but still.

As for right now I'm enjoying what I can of my life and not drown myself in self-pity which does not a lick of good for anyone, especially myself.

God's got a plan, he knows what he's doing so all I can do is roll with it.
 
Dixie said:
Well sunday I might as well have been blind as I walked straight into a chair that I didnt see, lol. Too bad I couldnt use hangover as exscuse. :afro:

As for sunlight burning my retinas beyond use, I have been wearing sunglasses while outside on sunny days as well as those bright overcast days. This alone may help it slow down a bit, but I'm not going to rely on it completely. I guess those weekends spent outside in the sun for 8 hours a day for 3 days straight probably didnt do much for my sight, lol.

On a more serious note, it does scare me sometimes like the possibility of not seeing my daughter walk down the aisle (if she ever does) and other 'special' moments like that. I know I would not be physically missing it, but still.

As for right now I'm enjoying what I can of my life and not drown myself in self-pity which does not a lick of good for anyone, especially myself.

God's got a plan, he knows what he's doing so all I can do is roll with it.
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I know exactly what you meant. That's what I ve been thinking about and knowing how frightful that be and trying to battle against self pity. It's hard to know if you are in self pity depend on what circumstances are.
 
I usually know when I'm in self pity, its the not-letting-it-go-on-and-on thats hard. Yesterday seems to be one of those days where I pretty much shut myself in the house all day and watched TV. I even had no desire to log on here and chat - thats how bad it gets sometimes, but today seems to be a little better.

Ah, life goes on though.
 
Dixie said:
I usually know when I'm in self pity, its the not-letting-it-go-on-and-on thats hard. Yesterday seems to be one of those days where I pretty much shut myself in the house all day and watched TV. I even had no desire to log on here and chat - thats how bad it gets sometimes, but today seems to be a little better.

Ah, life goes on though.
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I know, there are times getting frustrating. Sometimes not feeling like do anything when something couldnt get in your way.There are mixed feelings in this situation.
 
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