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Retinitis Pigmentosa Room

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Facebook Support Group Nov. 3rd, 2009 @ 03:23 pm
rpigmentosa
There is a great FB support group for RPers.

http://www.facebook.com/home.php#/group.php?gid=30904504203

And you can also always read my blog for interesting information on RP and blindness.

Blind VI Now on Twitter & Facebook! Jun. 14th, 2009 @ 12:09 am
blindvi
More ways to promote/support Blind VI and spread the word about the website!

Twitter
http://twitter.com/BlindVI
Blind VI now has a twitter page! Please follow Blind VI! This is a great tool for those who have no time to read a long lengthy blog entry. Lots of people can read stuff on their mobile phones so this is something new that could be a positive for the website. Once you're following Blind VI's twitter page, spread the word by telling your entire followers list to follow Blind VI!

Facebook Fan Page
http://www.facebook.com/home.php?ref=home#/pages/Blind-VI/37535532979
Everyone's doing it! Please place Blind VI as one of your fan pages! Click on Become a Fan and then click on the SHARE button and share Blind VI's fan page info to all your friends on facebook. And ask them to become a fan to Blind VI as well to support the website.
Current Mood: excitedexcited

White Cane Awareness Day Oct. 10th, 2008 @ 09:09 pm
blindvi
Subject: Oct 15 is White Cane Awarness Day.

Date: Oct. 15

Here's a website about the long white cane.

http://white-cane.no-ip.info
click on White Cane Safety Day.

The cane is used by those who are blind and partially sighted. Not alot of people are educated properly about the long white cane.

Do your part by contacting your local Lions Club and making a donation to their white cane day fundraiser.

Club Locator:
http://www.lionsclubs.org/locator/lions/search_form_state.php

Please spread the word by copying the text below.
Then pasting it in blogs, bulletin and/or also pasting this message in a email and forwarding it to your friends and family!
Current Mood: busy

Aug. 11th, 2008 @ 09:39 pm
blindvi


Get your own braille alphabet card!


Get your very own braille alphabet card for your blog, profile, or website! Two versions available!

ONLINE:
2 types: dark lettering for light backgrounds. Light lettering for dark backgrounds. Link right below the image. If tables bother you remove everything above and below the image and link urls. But place a paragraph break so that it flows.

PRINTABLE:
Dark lettering on white background.
Microsoft Office Publisher document.
You must have Microsoft Office Publisher to access.

Enjoy!


visual biofeedback Oct. 9th, 2006 @ 02:13 pm
fragmentsofnim
Does anyone have any thoughts on biofeedback for the eyes? I live in the Seattle area, and we just had a new Doctor, a pioneer in the field of visual biofeedback, move here. I have Retinitis Pigmentosa. Hoping he can improve my field of vision, or delays the visual degenration even a tiny bit. I'd love to hear if this has worked/not worked for anyone else, or if anyone has read any articles on this subject.
Thank you!
Other entries
» White Cane Day Poll
Hi all, I'm a member of the Lions Club here in my state. And I'm polling the blind community to see what they'd like to see either on the day of the fund raiser or before the fund raiser happens.

The poll is a list I've generated on my own and I wanted some feedback on these areas that I thought of.

As you know White Cane Safety Month is October 15. And most Lions Clubs are doing their White Cane Fundraisers on October 7-8. And if you know anyone who is sighted who'd like to take part in this poll may do so ONLY if they have a LiveJournal account.

Go to the link below to participate. All feedback is appricated! I am hopeful many of you will participate and pass this poll on to friends and family. Suggestions and comments can be sent via the two email links in the poll. Thus the reason for me disabling comments.

White Cane Day Poll
» Clickable icons for the site
Posted on: blindvi, braille_talk, rp_room and vi_place

Would you like to advertise the site? All you have to do is copy the code in the text area and then place the code on your profiles/website that allows html code. These banners are free and can be forwarded to friends who'd like to do the same. I only have one set finished below.



  



» NFB community
Hi everyone one of my friends has created a community for people who are interested or are involved in the NFB or anyone else who wants to join, but I want to make something clear. We are maintainers and no bashing or flaming of the NFB or it's beliefs will be tolerated. The URL address is "http://www.livejournal.com/community/nfb_federation/" I hope everyone will join.
x-posted everywhere
» anyone in Missouri?
If this is not allowed feel free to delete.
Hey is their anyone who lives in Missouri? If so I encourage you to check out the National Federation of the Blind (NFB) convention. If your a high school student or a college student at any level feel free to join our student division. The Missouri Association of Blind Students. (MABS) The convention is March 24-26 in Jefferson City. We will have our annual business meeting that Friday at 9:00 and our annual lunchon that Saturday at 12:00. If their is anyone from Missouri please feel free to add me to your friends list and post a comment to this entry telling me where you live, please. For more information about the convention go to: "http://www.nfbmo.org" and click on the link that says 2006 state convention. You need to do this soon because rooms are filling up.
x-posted every where.
» RP and Photopsia
I am a 50 year old man, and was diagnosed with autosomal recessive RP in 1993. At first the symptoms were poor dark adaptation and peripheral vision, although my visual acuity subsequently began to deteriorate. However in 2000 (during a particularly stressful period in my life) I began to suffer from photopsia (ie flashing lights), and since then this has got steadily worse.

The photopsia takes the form of flashing points of light (at about 5 cycles per second), across my entire field of vision in both eyes, and is there constantly (I have previously described this as if it were watching a TV screen that had not been tuned correctly, and was being masked by the visual noise). The photopsia is always there, even when I shut my eyes or am in the dark, although some days it is worse than others.

In order to alleviate photopsia I have been prescribed drugs such as Phenytoin, Sodium Valproate and Tegretol, and whilst Phenytoin does help a little, it does not dampen down the symptom of flashing lights enough so that it can be ignored. I have also tried a course of acupuncture (in conjunction with Chinese herbs), but this did not really help.

I understand that the form of photopsia from which I am suffering is unusual, since most people seem to get static images that were not always present. I would be extremely interested to hear from anyone else with RP that has been suffering from symptoms similar to mine. I would also be interested to hear about any other form of treatment prescribed to alleviate this rather distressing symptom.

David
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