It is confirmed....

rockin'robin said:
Am planning to do so after Christmas, as will be getting new glasses for near-signtness....and ur welcome! Wish I could help you more!
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:) Ok I am off here since I have to get a shower and get ready to head out to Gainesville for my appointment. I will keep everyone updated.
 
The doctor did a quick look on my test before I left and told me I have 20 degree loss in both eyes and possibly 30. She will tell me a more accurate number when she looks over the results more. She did give me some "eye" vitamins that may help.

I did see a photo of my eye. She showed me all the signs that pointed to having RP. The black dots and narrowing of the blood vessel. She said something about a halo too. I did ask her to email me the photos and I have not recieved them yet.
 
Wirelessly posted

I might have US/RP I never really asked my eye doc to refer me to opthalmologist to find out about my night blindness and new issues with my visions? How that goes? I have medicare and live in north delaware
 
:(

I tested for US/RP when I was 14. I was in English class when a note was brought to my teacher. The teacher called me to her desk and showed me the note saying that I had tested negative. At the time, I was like, "Oh cool, whatever," and I went back to doing what I was doing. Looking back now, I can't imagine the sense of relief I feel knowing that I don't have Usher's.

Best wishes, BB. Good luck on your journey.
 
:grouphug: So happy to hear that you have a great supportive group. Family and friends can make it so much more bearable.
Hoping that your holidays are joyous and that you are surrounded by all your best friends and family.

Keep us posted please.
 
really sorry about that, hopefully it can be treated or at least delayed? or managed? i have high risk of gloucoma, which is dangerous to my eyesight, i get check ups every 2 years and i manage with 'time out' from computers/tv, and uses eye drops to prevent dryness (lots of reading does that too)... so hopefully they 'caught it early' for better management
best wishes. hang in there, try not to freak out too much (as it did to me too- i know but stressing wont help...) Good support you have, are a blessing, glad for you, and once again Good luck
 
SkullChick said:
Wirelessly posted

I might have US/RP I never really asked my eye doc to refer me to opthalmologist to find out about my night blindness and new issues with my visions? How that goes? I have medicare and live in north delaware
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Opthalmologist will dialate your pupils and look into your eyes to see the retina, and take several photos of your eyes. The pictures were enought to tell them I have RP. Since I have all the symptoms. Once concluded that you have RP they will run other test to check your field vision, etc.

With medicare, I am not sure, you may have to ask your doctor for a referal. Medicare do cover screening of certain eye diseases, but the best thing to do is ask your PCP. :)
 
Jazzberry said:
I'm glad you don't need the CI yet and I hope your condition progresses very slowly.

I just mentioned what I mentioned about the two people I know so you could get an idea of what stage they are at physically. At this point they are both pretty much blind also. They are also both very much in the swing of things and one of them is working full time. It seems that they have been able to figure out how to manage it (including the constant slow adjustment of very little disability to where she is now) , so FWIW, I just wanted to pass that along also.
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I greatly appreciate it. I think I will take you up on the offer. The more I learn about this the better I will be. :)
 
jillio said:
My college roommate from years ago had RP. She taught me a lot.
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I have googled several things last night and is talking to a few people about it. So if anyone has any useful information on Usher Syndrome or resources that will help me please feel free to post it here. I have also consider learning to use a cane or a service dog. I also would like to learn Tactile Sing language. I already know and can see ASL. I just prefer to be prepared for it, down the line, when my vision becomes worse.
 
I am glad that your family is giving you the support you need. There is nothing like family support. :hug:
 
I look at the stars in the sky, hoping that there is one who keeps an eye to you.

etoile-neutron-artiste.jpg


[ame]http://www.youtube.com/watch?v=NEF3VtANlRU[/ame]
 
I have gotten the images of my eyes last Monday VIA email. At the office she only showed me one image. Now I have seen the others.
 
Babyblue said:
I greatly appreciate it. I think I will take you up on the offer. The more I learn about this the better I will be. :)
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I had missed this when you first posted BB, here's some info from my friends.

One of my friends suggested these resources:

* Foundation Fighting Blindness Foundation Fighting Blindness: Give the Gift of Sight On that web site's home page, there are purple boxes just under the banner. One of them is labeled "My Community" and leads to links for local chapters and other resources.

* Florida Deaf-Blind Association Florida Deaf-Blind Association

* Usher's Listserv (My note -- it seems that started out as a listserv but it's now a Yahoo Group.)
Current:
Yahoo! Groups

Their archives are at:
LISTSERV 16.0 - USHERS List at TR.WOU.EDU

She also suggested asking Florida folks about the Florida's Commission for the Blind and to register for their services. I wonder if they would help pay for some of your classes on how to learn Braille and tactile sign?



The second friend also recommended the Foundation Fighting Blindness that the first friend recommended, and she recommended the RPlist serv:

LISTSERV@listserv.icors.org

Go to RPlist home page or email RPLIST-REQUEST@listserv.icors.org for directions on how to join.

I'm also sending you a PM.
 
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Thank you. I have looked into some of those already and some are new. I greatly appreciate it.
 
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