Anyone have Retinitis pigmentosa or Usher Syndrome? - Page 2

jillio · 07-08-2008, 11:34 PM

Quote:

Originally Posted by Bottesini

You are welcome. I looked at the one you put up too. They were talking about the macula too, which is what I have a scar on in my right eye. I couldn't understand if they meant they could fix something like that with stem cells too. I don't think mine can get fixed, but I wish.

They are saying its a long shot.

Bottesini · 07-08-2008, 11:35 PM

Quote:

Originally Posted by jillio

They are saying its a long shot.

I was afraid so.

jillio · 07-08-2008, 11:42 PM

Quote:

Originally Posted by Bottesini

I was afraid so.

Sorry.

Pinky · 07-09-2008, 12:26 AM

Quote:

Originally Posted by Bottesini

I was afraid so.

Yeah me too I hate the painful. But I have to do it. You will get better after surgery. You can put a sleep IV to calm down and forget about nervous.

SCBassist · 07-09-2008, 12:35 AM

Pinky, you're not the only one. Matter of fact, I found out I have a combination Macular Degeneration/Ring Scotoma in the beginning stages. This is on of the reasons my eye doctor has me involved in training with a guide dog early, a sort of prevention thing just in case it gets worse, although extremely unpredictable. At the moment, I'm sighted, although started noticing night vision problems. It surprised me as it is a genetic condition (Not Ushers), and I'm learning to deal with it very well.

Pinky · 07-16-2008, 11:21 PM

I don't have Macular Degeneration. Do you have your own guide dog for your sighted and deaf? My vr asked me if I would get a guide dog. I told him no. I already have my own small dog. I don't like to have a shedding fur on everywhere. I didn't need the cane because I can see like a normal and walking fine. I don't want anyone to know who I am if I become a blind. It really scared me! I don't want to lose my favorite stuff. I am doing with beadwork on magnifier with bright light. I want to have a surgery on my vision in future. But I am still research to find a best fit for me. I am not sure about stem cell and bionic between. In our American can't have stem cell for patients. In China have Stem Cell legal for every patient's disease.

Quote:

Originally Posted by SCBassist

Pinky, you're not the only one. Matter of fact, I found out I have a combination Macular Degeneration/Ring Scotoma in the beginning stages. This is on of the reasons my eye doctor has me involved in training with a guide dog early, a sort of prevention thing just in case it gets worse, although extremely unpredictable. At the moment, I'm sighted, although started noticing night vision problems. It surprised me as it is a genetic condition (Not Ushers), and I'm learning to deal with it very well.

dreama · 07-25-2008, 02:28 PM

Pinky: They have been promising cures for things for years. Nothing new. Nothing ever comes of it. My mum was supposed to be cured of cancer twice before she died so I believe in these cures about as much as I believe in Santa or the tooth fairy.

I have severe light sensitivity so I have to keep my eyes completely covered in light.

I think that once you get over the denial and learn to accept your condition and learn Braille, Blind skills etc you will be a lot better off. Believe me it is a hell of a lot worse losing your sight then actually being blind. Being Blind or even Deafblind once you've learnt how to addapt is not such a terrible condition.

Pinky · 07-26-2008, 02:58 PM

My vision is still 20/40 never change since I was born. I don't believe in Santa or Tooth Fairy. They are myth! Ha Ha I believe in God. I am hope to find a bionic for blind to see. I watched on tv "it's miracle". The blind boy was born with blind not a profound. He got a surgery to put a bionic in his eyeballs. He got heal and can see. It made me cry and happy! If you want to see from blind. You have to be faith as miracles to see. By the way I am not full blind yet. I have only blind at night that all. I can see everything very well. But I can't see on the bottom like floor. I am still wear a glasses and contact lenses. But I can't drive. I can ride on bus by myself. I can ride on a bike.

Quote:

Originally Posted by dreama

Pinky: They have been promising cures for things for years. Nothing new. Nothing ever comes of it. My mum was supposed to be cured of cancer twice before she died so I believe in these cures about as much as I believe in Santa or the tooth fairy.

I have severe light sensitivity so I have to keep my eyes completely covered in light.

I think that once you get over the denial and learn to accept your condition and learn Braille, Blind skills etc you will be a lot better off. Believe me it is a hell of a lot worse losing your sight then actually being blind. Being Blind or even Deafblind once you've learnt how to addapt is not such a terrible condition.

Aleser · 07-26-2008, 05:15 PM

Quote:

Originally Posted by ~♥~Pinky~♥~

My vision is still 20/40 never change since I was born. I don't believe in Santa or Tooth Fairy. They are myth! Ha Ha I believe in God. I am hope to find a bionic for blind to see. I watched on tv "it's miracle". The blind boy was born with blind not a profound. He got a surgery to put a bionic in his eyeballs. He got heal and can see. It made me cry and happy! If you want to see from blind. You have to be faith as miracles to see. By the way I am not full blind yet. I have only blind at night that all. I can see everything very well. But I can't see on the bottom like floor. I am still wear a glasses and contact lenses. But I can't drive. I can ride on bus by myself. I can ride on a bike.

Your denial will only get you so far...

"I only cannot walk alone at night"
"I only can't see the steps at the theater"
soon it'll be
"I only can't read SMALL things"
"I only trip over curbs SOMETIMES'

You're blind. Which has nothing to do with snellen acuity and everything to do with field of vision. And you use your sight as a crutch because you think that being blind is inferior to being sighted. And it will GET YOU NOWHERE.

I walk alone at night. My vision is nearly completely blind- I can not see an SUV and walk right into it, when I'm not using my cane.

When is the last time you went for a two mile jog in the dark, alone? When is the last time you felt safe taking the bus at night? When is the last time you ran to the store for something at 2 am alone? When is the last time you felt safe going down the stairs in a dark film?

You may see more than me, but in this situation, you're the blind one.

Bosedes906 · 07-31-2008, 03:52 PM

hey i know life sucks when things happen that you can't help with. I got US too, diagnosed when i was 15 and it really destroyed my life when I had to stop playing sports because as you get older you compete at night and I couldn't do all the things I use to do when I was younger. Just like you I believe it can be fixed and for people that tell me to stop believing, they can go to hell for having no faith.

Anyways you're smart for taking multi-vitamins and omega fish oil. I take those too. And as for vitamin A causing liver problems, that's only the case if you take too much vitamin A for a long period of time. I was recommended to take about 5,000 to 10,000 IU of vitamin A daily but if i take more than that for a long time, then it'll have side effects. Also, I would suggest you try changing your diet and exercise daily if you hadn't already done these. FOr dieting you wanna stay away from salt, white sugar, soda, junk food, and anything high in sugar and consume 3 to 5 fruits and vegetables a day (nothing new i know lol) and drink lots of clean water. I don't have all the info but you can go to google and look up 'diet and vision' or 'diet for vision improvement' or something like that and read some articles. I been exercising for a long time so that might be why my vision deteriorates slower than it should but i'm gonna start changing my diet cuz it seems reasonable and see if it slows it down even more.

Pinky · 07-31-2008, 05:39 PM

Quote:

Originally Posted by Bosedes906

hey i know life sucks when things happen that you can't help with. I got US too, diagnosed when i was 15 and it really destroyed my life when I had to stop playing sports because as you get older you compete at night and I couldn't do all the things I use to do when I was younger. Just like you I believe it can be fixed and for people that tell me to stop believing, they can go to hell for having no faith.

Anyways you're smart for taking multi-vitamins and omega fish oil. I take those too. And as for vitamin A causing liver problems, that's only the case if you take too much vitamin A for a long period of time. I was recommended to take about 5,000 to 10,000 IU of vitamin A daily but if i take more than that for a long time, then it'll have side effects. Also, I would suggest you try changing your diet and exercise daily if you hadn't already done these. FOr dieting you wanna stay away from salt, white sugar, soda, junk food, and anything high in sugar and consume 3 to 5 fruits and vegetables a day (nothing new i know lol) and drink lots of clean water. I don't have all the info but you can go to google and look up 'diet and vision' or 'diet for vision improvement' or something like that and read some articles. I been exercising for a long time so that might be why my vision deteriorates slower than it should but i'm gonna start changing my diet cuz it seems reasonable and see if it slows it down even more.

Thank you for post a comment about yourself. Yes, I had a destroy my life since I found it out I has Usher Syndrome when I was 15 and also my dad passed away. I can play sports. I prefer to play Track & Field, Cross Country run, and Swimming. They are safe for me. I didn't want to join for volleyball and basketball team. Because It's hard to see the balls. I had experience with balls hit on my head and face many times. It's very frustrate to me. I forget about baseball. I love to play baseball.

I am taking a multi-vitamins. I don't like to take many vitamins can harm my livers. i am not sure if I have a problem with liver yet. I will figure it out on Sept. I hope it's nothing serious. I stopped taking a Birth Control Pills by my Liver Doctor recommend me stop take it. I stopped take it since last April. I always eating Omega 3. I like eats more than taking too much vitamins for no reason. I know how to do nutrition facts for my diet. I always drinking a lot of water. I always be in faith. I know about the religion.

I ain't a dumb.

Do you drive? I can't drive.

Bosedes906 · 07-31-2008, 05:43 PM

No i don't drive it pisses me off. I drove fine when i had my permit for awhile but then doctor recommended that I don't drive

Pinky · 07-31-2008, 05:49 PM

Quote:

Originally Posted by Bosedes906

No i don't drive it pisses me off. I drove fine when i had my permit for awhile but then doctor recommended that I don't drive

Same here. I was pissed off either. But I am happy with my husband. He is caring about me. He accepted who I am. He wish I can drive but I don't have a permit license. I can ride on city bus and bike. I hate to depend on people's car for ride. It's annoying and frustrate to me.

I have to wait for Stem Cell Research approve by goverment. Or I can get a bionic surgery for Retina. I'm hopefully!

Bosedes906 · 07-31-2008, 06:25 PM

Yeah I know what you mean. I hate relying on others to drive me too. It sucks when my girl isn't able to drive (or pick me up) and I have no way of driving to her. I don't know much about the stem cells thingy but bionic surgery doesn't sound safe since no solution is 100% safe for treating US or RP diseases. I wonder if eye implants is possible lol

Pinky · 07-31-2008, 08:29 PM

Quote:

Originally Posted by Bosedes906

Yeah I know what you mean. I hate relying on others to drive me too. It sucks when my girl isn't able to drive (or pick me up) and I have no way of driving to her. I don't know much about the stem cells thingy but bionic surgery doesn't sound safe since no solution is 100% safe for treating US or RP diseases. I wonder if eye implants is possible lol

You should check it out for Stem Cell Research link. Just look at my posts. It take 5 to 10 years later. Hey listen. I need to go now. I have many things to do. I will be back soon if I am feeling better.

07-09-2008, 12:35 AM	#35 (permalink)
SCBassist ...And your point is? Join Date: Aug 2007 Location: Spartanburg, SC Posts: 1,040	Pinky, you're not the only one. Matter of fact, I found out I have a combination Macular Degeneration/Ring Scotoma in the beginning stages. This is on of the reasons my eye doctor has me involved in training with a guide dog early, a sort of prevention thing just in case it gets worse, although extremely unpredictable. At the moment, I'm sighted, although started noticing night vision problems. It surprised me as it is a genetic condition (Not Ushers), and I'm learning to deal with it very well. __________________ Complaints Division Here

07-25-2008, 02:28 PM	#37 (permalink)
dreama deafblind vegan Join Date: Apr 2007 Location: England Posts: 3,018	Pinky: They have been promising cures for things for years. Nothing new. Nothing ever comes of it. My mum was supposed to be cured of cancer twice before she died so I believe in these cures about as much as I believe in Santa or the tooth fairy. I have severe light sensitivity so I have to keep my eyes completely covered in light. I think that once you get over the denial and learn to accept your condition and learn Braille, Blind skills etc you will be a lot better off. Believe me it is a hell of a lot worse losing your sight then actually being blind. Being Blind or even Deafblind once you've learnt how to addapt is not such a terrible condition. __________________ I speak for those who cannot speak for themselves. http://www.fightfoca.com/

07-31-2008, 05:43 PM	#42 (permalink)
Bosedes906 Registered User Join Date: Jul 2008 Location: CA Posts: 35	No i don't drive it pisses me off. I drove fine when i had my permit for awhile but then doctor recommended that I don't drive __________________ A 2nd chance is more than enough; any more then you're just a failure

07-31-2008, 06:25 PM	#44 (permalink)
Bosedes906 Registered User Join Date: Jul 2008 Location: CA Posts: 35	Yeah I know what you mean. I hate relying on others to drive me too. It sucks when my girl isn't able to drive (or pick me up) and I have no way of driving to her. I don't know much about the stem cells thingy but bionic surgery doesn't sound safe since no solution is 100% safe for treating US or RP diseases. I wonder if eye implants is possible lol __________________ A 2nd chance is more than enough; any more then you're just a failure

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode

Today
Deafness	Sponsored Links __________________ This advertising will not be shown in this way to registered members. Register your free account today and become a member on AllDeaf.com

07-31-2008, 03:52 PM	#40 (permalink)
Bosedes906 Registered User Join Date: Jul 2008 Location: CA Posts: 35	hey i know life sucks when things happen that you can't help with. I got US too, diagnosed when i was 15 and it really destroyed my life when I had to stop playing sports because as you get older you compete at night and I couldn't do all the things I use to do when I was younger. Just like you I believe it can be fixed and for people that tell me to stop believing, they can go to hell for having no faith. Anyways you're smart for taking multi-vitamins and omega fish oil. I take those too. And as for vitamin A causing liver problems, that's only the case if you take too much vitamin A for a long period of time. I was recommended to take about 5,000 to 10,000 IU of vitamin A daily but if i take more than that for a long time, then it'll have side effects. Also, I would suggest you try changing your diet and exercise daily if you hadn't already done these. FOr dieting you wanna stay away from salt, white sugar, soda, junk food, and anything high in sugar and consume 3 to 5 fruits and vegetables a day (nothing new i know lol) and drink lots of clean water. I don't have all the info but you can go to google and look up 'diet and vision' or 'diet for vision improvement' or something like that and read some articles. I been exercising for a long time so that might be why my vision deteriorates slower than it should but i'm gonna start changing my diet cuz it seems reasonable and see if it slows it down even more.