Blind and Visually Impaired Community
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new and looking for advice (self.Blind)
submitted by freakygreekbeak
Hi all, my name is maria. (I apologize if this post is redundant or similar to another post) I’m 21 years old and have bilateral uveitis, bilateral glaucoma, and bilateral aphakia as the result of cataract removals at a young age and surgical complications. my right eye sort of works, but I depend on and essentially only use my left eye. Recent developments in my glaucoma are resulting in a massive loss of visual field in my good eye, and yesterday, my doctors told me I have an estimated five years left until I am completely blind. I am comfortable with this and it does not come as a surprise, but I need advice. I live in a fairly small city, and don’t know any other visually impaired people. I’ve started learning braille and navigating my living space without using my eye, but I don’t know how else to prepare or of any resources available to me. Does anybody have any suggestions for me as far as preparing for the future? I’m trying not to be scared, but admittedly feel a little overwhelmed and have no idea where to start or what to do. My best wishes to all of you, hope all are well.
KillerLag 4 points 2y ago
Have you gotten any rehabilitation training, such as Independent Living Skills or Orientation and Mobility? Depending on the country/state you live in, there are different agencies that can provide training.
I try to tell my client it is better to get training on the skills while they have vision, if they know there are likely to lose vision later in their life. It helps them as their vision slowly decreases, and gives them confidence that they have some skills to help cope as well.
It can also be useful to talk to someone who has also lost their vision. A rehab worker may be able to put you in touch with someone, or know about a support group.
I try to tell my client it is better to get training on the skills while they have vision, if they know there are likely to lose vision later in their life. It helps them as their vision slowly decreases, and gives them confidence that they have some skills to help cope as well.
It can also be useful to talk to someone who has also lost their vision. A rehab worker may be able to put you in touch with someone, or know about a support group.
freakygreekbeak [OP] 1 points 2y ago
I haven’t had any training and honestly (embarrassingly enough) didn’t even know it existed ! I’ll start searching for local services like these and figure out where I can start. Thank you so much for suggesting this, I cannot express how much I appreciate your help!
KillerLag 1 points 2y ago
No problems, a lot of people don't know about those services. Do a quick Google search of your area and hopefully something would come up.
freakygreekbeak [OP] 1 points 2y ago
thank you so much!
zersiax 3 points 2y ago
Given how many things are going digital, it is probably a good idea to get familiar with screenreaders, both on your phone and your main computer. VoiceOver for iOS, Talkback for Android, NVDA or Narrator for Windows are all either free or built-in. I'd be happy to lend a hand there, just send me a message whenever :)
freakygreekbeak [OP] 1 points 2y ago
Thank you! I really appreciate this, honestly so grateful so much technology exists to help with these things, I’m definitely going to start familiarizing myself with them.
MRMeneer 2 points 2y ago
HI i also have Glaucoma and know how it is to loose visual feild dramatically. Its a constant adaptation to the situation. A few things that might help you are prb the things you might already be using. But here it goes
one touch kettle; pours exact amount into cup like an earn that dispensesthe hot water when boiled.
liquid level indicators.
talking microwaves and kitchen goods; scles andthe like. talking weighing scales forthe bathroom. Alexa is a good thing to have to operate lights and camera at rfront door and rings and the like. Screen readers and tts gadgets take years to master so it is good to dip your toes into them now to find the right one for you.
bump on stickers are good use for buttons on microwaves and such for eassy access.
Maybe learn braille if you dont wantto have things in your ears all day and thus save hearing.
make some adaptations to your place of living now if possible.
one touch kettle; pours exact amount into cup like an earn that dispensesthe hot water when boiled.
liquid level indicators.
talking microwaves and kitchen goods; scles andthe like. talking weighing scales forthe bathroom. Alexa is a good thing to have to operate lights and camera at rfront door and rings and the like. Screen readers and tts gadgets take years to master so it is good to dip your toes into them now to find the right one for you.
bump on stickers are good use for buttons on microwaves and such for eassy access.
Maybe learn braille if you dont wantto have things in your ears all day and thus save hearing.
make some adaptations to your place of living now if possible.
freakygreekbeak [OP] 1 points 2y ago
Thank you for your help ! I’ve started learning braille, but I didn’t even know bump stickers existed. I appreciate you !
MRMeneer 2 points 2y ago
hAPPY TO HELP ANYTIME. BUMP ON STICKERS ARE LIKE BRAILLE IN CONSEPT THAT YOU STICK EM ON BUTTONS LIKE MICROWAVE OR WASHMACHINES FOR EASY PRESS. CAN USE EM TO MATCH UP LIKE TURNING A KNOB TIL THE BUMPS MEET UP OR STICK EM ON THE ONE MINUTE BUTTON IF YOU HAVE TOUCH BUTTONS THEN ITS EASIER TO HAVE STICKERS ON. A GOOD PODCAST IS DOUBLE TAP CANADA. ITS THREE GUYS TALKING ALL THINGS TECK FOR BLIND AND vi PEOPLE. AND ANOTHER IS TECH TALK THERE ARE SOME PODCASTS TO HELP WITH AMAZON FEATURES AND GADGETS TO MEET ACESSABILTY NEEDS. . hAPPY TO CHAT ABOUT ANYTHING IF YO LIKE.
iM sTEVEN 39 IN THE uk.
iM sTEVEN 39 IN THE uk.
freakygreekbeak [OP] 1 points 2y ago
thank you very very much, this is very helpful !
thedarknesswithin911 2 points 2y ago
Hi! I am also a 21 year old girl with bilateral rapidly progressive glaucoma! My visual fields have progressed so much in just 2 months despite having already done surgery:(. I am also worried about it and wondering what I would do in future. Would love to chat with you about things if you want! Shoot me a PM whenever!
EmeraldSunrise4000 1 points 2y ago
Hi! First of all it’s a really good step to post on here, meeting other people who are visually impaired is really integral to feeling okay with it. If you don’t mind me asking, what country do you live in? Just because I can offer advice but for specifics, it would be useful to know! No worries if not though ❤️
freakygreekbeak [OP] 2 points 2y ago
you’re so right, this post has already helped me meet people in similar situations and it’s helping so much. I live in the united states, so luckily even though I live in a smaller city, usually when we don’t have something another nearby city will. Thank you for your help !
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