I am using this blogging site to keep friends and family informed about my life for the next 7 months or so of blindness training at the Colorado Center for the Blind. I have Usher's syndrome which results in hearing loss and progressive vision loss. Now the state of Colorado is paying for me to go through an extensive training program. There will be lots of challenges ahead for me and I am both apprehensive and excited!!!! The training consist of being blindfolded 8 hours a day 5 days a week and learning how to function completely without sight.

Wednesday, March 17, 2010

Info on RP and Ushers

Some info I compiled from online about Retinitis Pigmentosa (the vision portion of my disease):




What kind of vision do people have who have retinitis pigmentosa?

People who have retinitis pigmentosa see things from the center of their eyes. They may see details in good light. They have trouble seeing anything in dim light. They may not notice things moving to the side. They may bump into things or trip on things. They do not see things to the side or down below or up above. Sometimes they feel like they are looking through a tube or a tunnel. People call this “tunnel vision.” It may take longer for people who have retinitis pigmentosa to see again when they go from bright light to dim light or from dim light to bright light. Persons with retinitis pigmentosa can be disturbed by photophobia. Light falling directly into the eyes causes dazzle. Light coloured surfaces may also reflect enough to disturb vision. Decreased contrast sensitivity is a common feature of retinitis pigmentosa and several other eye diseases. It means that the person does not see faint shadows, (s)he needs high contrast in order to see.

My comments:
This is why I no longer can drive. My field has narrowed significantly and I wasn't noticing things happening around me.
My vision is continuously deteriorating so I am in training to prepare for the eventual lose of most of my useful sight.
I see pieces of people instead of all of them. This goes for other objects as well.
I see blinding light in clear strong sunlight.
I see nothing in the dark. No shadows.

Ushers interview:
Here's a link for an interview on the Today Show about a woman with Ushers syndrome. She's very much like me and says a lot of insightful things. She has the same fears and talks about them very well. It's a very informative video that will help you see what it's like from my perspective.

http://today.msnbc.msn.com/id/26184891/vp/29741456#29790193
click on the video called "facing a rare disorder with courage." There's another one called "It's like slowly being taken from this world."
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1 comment:

  1. Patti MosesMarch 18, 2010 at 7:21 PM

    that msnbc program was good. She is amazing; like you! I tried the simulator too..that is a neat website... Interesting to see the different levels of hearing and vision loss. Oh I love the woodworking video of you!
    keep smiling and do everything unto HIM!
    XO
    Patti

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