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Blind and Visually Impaired Community

Full History - 2018 - 04 - 19 - ID#8deij3
2
Stargardt's and possible RP, how to prepare for eventual vision loss? (self.Blind)
submitted 5.306802726337448y ago by Materia_Junkie
I'm 35 and I've been seeing specialists for the last eight years or so. Diagnosed with Stargardt's six years ago, genetic markers for RP, and an ERG that appears to confirm the he RP (waiting for confirmation, currently moving forward with the Stargardt diagnosis). Taking the bus to work now and greatly reducing my driving.

What should I be doing to prepare for eventual blindness? Are there any good braille learning books for the currently sighted? Any advice is welcome!
Silverottawa 4 points 5y ago
O&M 100%. I though I could prepare myself and I learned voiceover on mac and IOS stuff, applied for a guide dog and have one, voice lights magnifiers all off that stuff. The hardest part is yourself. I have days where it gets to me big time, just brush it off and keep chugging as it passes over and it teaches you different ways of doing things. I don't use braille and never had an experience that made me wish I did.
Materia_Junkie [OP] 1 points 5y ago
Thanks! I'm staying pretty positive. It's been a long slow decline. Trying to stay ahead of the curve.
KillerLag 2 points 5y ago
Getting orientation and mobility training early definitely makes it a bit easier. With Stargardt's, you often lose colour vision (and a lot of central vision). You may need to get filters to make outdoor (or bright) environments better.

You should contact your local rehabilitation agency and get set up. They can suggest some equipment and training that might be useful for your situation, as well as other sources of assistance for your area.

As others have said, the hardest part is accepting the vision loss. As you lose your vision, you may go through the 5 stages of grief (possibly more than once). Family support would be very important for that.

Also keep in mind that losing your vision does NOT mean you can't do anything anymore. There are more and more things becoming accessible, and people can do some amazing things when they put their mind too it.
DiegoARL38 2 points 5y ago
Well, as someone who is in the same situation, i suggest you to start learning to use screen readers, both in your mobile and computer. It'll make the transition smoother and less painful. For my part, i had a few braille lessons, but i haven't really use it at all, mainly because there's not much point where i live, besides currency\-recognition. I, also, have my white cane and use it every time i go out, for the same reasons that i use screen readers, regardless of my limited vision. I would recommend that, when the momment arrives, you apply for a guide\-dog. With eBooks, audio\-described movies and TV shows, and mobility apps, i'm very satisfied with my possible vision\-loss preparations.

Good luck.
Materia_Junkie [OP] 1 points 5y ago
Thanks! Having some idea on things I can do now is a big help.
matt_may 2 points 5y ago
I skipped Braille (ducks). In the modern world, audio books, podcasts, screen readers replace much of the need. O&M is important to help get around. I'd look into disabled transportation. Good luck!
cfish1024 4 points 5y ago
Sorry what's O&M?
Materia_Junkie [OP] 3 points 5y ago
Materia_Junkie [OP] 1 points 5y ago
Thanks!
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