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Blind and Visually Impaired Community

Full History - 2021 - 11 - 28 - ID#r47qxn
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[deleted by user] (self.Blind)
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DrillInstructorJan 37 points 1y ago
This is something like the situation I was in when I was 19 and I have mentored people who were in similar circumstances. All of this is written in my shouty drill instructor voice, so please imagine me yelling and marching up and down like some sort of military hardass.

The first thing everyone thinks is "this is traumatic, give her time". This is fine, but so long as she's medically fit, not long. Get a therapist's advice, but really, days not weeks. The feeling horrible will not go away until you make it go away. She won't magically start feeling fine if you just wait, it seems cruel, but start now.

There are two essentials. Braille is not one of them, I would never put anyone off but I've been blind 20 years and have a job I love without it.

Learn computer access so your wife can come here and talk to us herself. If she can't see to read the screen, get NVDA or Jaws or Talkback on iphones or Voiceover on Android. It will be frustrating, but she needs to be able to use computers so work on it. It helps so much and no offence but we'd rather talk straight to her (as well as to you of course!)

Learn mobility so she can go places. As people have said you can get training with a cane if necessary. No, she won't want to use a cane in public, nobody does. She will in the end, usually after the first couple of bruised hips. There is a also technique to being guided by someone else without embarrassing both of you. And another technique about not being grabbed by people who are trying to help but aren't.

Do not let her get out of touch with her friends. They will probably go into giving her space mode which can cause people to just never call. If that happens, get her to call them (make her figure out how to do it on her phone, don't do it for her). Get her to go out for coffee and stuff.

Do not let her lie in bed or veg around at home in sweat pants. Even if she's not working right now, she has a job, which is to figure this situation out and boy is it ever a job. So get up, normal time, breakfast, dress presentably, yes makeup is possible, it's just a learning process.

Do not let her get out of shape, or if she isn't in shape, think about getting in shape. It makes literally everything else easier.

Do not let other people do everything for her.

Finally please be there for her in the mornings because she will wake up, and realise what the situation is, and it is not very nice.

What does she do for a living?
Nikanoru181 6 points 1y ago
I read this in my old drill instructors voice :) Thank you so much for this. Sorry for the late response, we spent most of the afternoon trying out the talkback app and google assistant to get her going on her phone. Hopefully soon we can get her on here herself, what a great community.

To answer your question, she trains dogs for a living.
ginsenshi 4 points 1y ago
Once she learns blindness skills she can still do dog training, I know quite a few people who have trained their own guide dogs and at the core of it is dog training.
ScatheX1022 9 points 1y ago
I'm not sure where you guys live but there have got to be local resources that can help you both, this is not something you guys need to deal with on your own. For example (I'm legally blind in my left eyes and impaired in my right) I have services through the state of Maine's DBVI (Department of Blind and Visually impaired) and on a more local level the IRIS Network, which provides all kinds of teaching for family and the person affected, assistive technology, safety tools etc. You must have something that is available to you. These things do require a referral from an opthalmologist though, but I assume she's being seen? You guys need to pursue assistance, they will help you with all these things.

Sending you both love and strength, this is a major transition and I know how overwhelming it is đź’š
B-dub31 8 points 1y ago
Definitely see if she an be referred to a low vision specialist, which helped me a lot. If she is declared legally blind (less than 20/200 corrected in her best eye) and you are in the US, she should automatically qualify for disability payments. She doesn't necessarily need to remain on disability, but it might provide some income support while she retrains for a different career if necessary.
Nikanoru181 4 points 1y ago
Thank you for the advice! I havent even thought about disability yet since this is all relatively new to us so that is great news
Nikanoru181 3 points 1y ago
Thank you so much for the information, we have another appointment Monday and I will definately be asking about the resources available
ScatheX1022 7 points 1y ago
Do you guys have a laptop? Something that is majorly helpful for me is downloading a Read Aloud extension (i use Chrome because it has such good extensions, but I know other web browsers do too). She can literally just highlight what she wants to read, right click and hit Read Aloud. Or, you can help her out by highlighting things for her if she's having a tough time seeing. I also highly recommend video or audiobook versions of things. For instance, if you guys want to learn about braille, look up videos so she can listen and learn with much less frustration. Her ears will become her biggest asset most likely, it's incredible how the body adapts. Obviously i'm speaking from my own person experiences, and I do have some sight, so I know these tips aren't helpful for everyone. Once you get involved with services, they will show you guys all kinds of amazing screen reading technology and other adaptations that will improve her quality of life.

Edit: Also using voice to text on her phone (and computer if possible) is hugely helpful. I also find the contrast of Dark Mode is extremely helpful for me, but that's going to be an individualized preference. I am visually impaired because of a brain tumor I had when I was 13 (now 33F) and I see what I describe as TV static, as well has having blind spots in my visual field in both eyes. Although I am legally blind in my left I do still have some vision. My right eye is 20/60 so it does the majority of the work though.
Nikanoru181 7 points 1y ago
Yeah she has a laptop, ill set up the extension and get it up and running. We have been messing around with the talkback app and google assistant on her phone this morning, and it looks like talk to text is going to be a great help. We tried the contast filters but she said they didnt make much of a difference. She has been blind in her left eye since a young age after a accident with no visibility, and now all she sees is different shapes and colors from her other eye. Initial prognosis is Diabetic retinopathy which basically damages blood vessels behind the eyes. Thank you again for all the tips i really appreciate it!
xmachinaxxx 6 points 1y ago
I became legally blind almost three years ago due to proliferative diabetic retinopathy. Sounds like you’ve gotten some great advice so far.
OldManOnFire 8 points 1y ago
Learning Braille isn't nearly as important as it used to be. Her computer can read web pages aloud to her. Her smart phone can read text messages aloud to her. She can even point her phone at a street sign in Spanish and her phone will read aloud its English translation. Audio books and podcasts have made Braille sort of redundant. It's a cool skill to have and I wouldn't discourage anybody from learning it if they want to, but technological advances have made it easy to access written language without knowing Braille.

The tone of your OP tells me you already realize you're in this together. My wife has had to learn tips and tricks to support me just like you have to learn ways to support your wife. The hardest changes she'll have to accept are the emotional ones. Going blind is traumatic in ways I didn't expect. Be there for her when she vents, commiserate with her when she loses her job and her driver's license. Your steadfast love will comfort her.

Use the time left to see everything she wants to see and do everything she wants to do. Make a blind bucket list and create some visual memories. Having a blind bucket list gives a sense of purpose and control. It helps ease the transition from working to being unemployed. I'll share mine with you if you're interested and looking for ideas.

Living without eyesight gets boring. Remember that feeling we had as teenagers of constantly waiting? Waiting for the school bus, waiting for a phone call, waiting for a ride to the mall, waiting with your finger on the RECORD button for the radio to play your new favorite song, waiting for summer vacation? Blindness brings back those memories. She'll spend time waiting for a ride, waiting for her next ophthalmologist appointment, waiting for the genetic test results, and waiting for an answer from Social Security. Help her fill the time.

Finally, understand that there isn't a right way to be blind. Your wife doesn't have to get a guide dog. She doesn't have to wear dark sunglasses. She doesn't have to walk with a white cane. She doesn't have to learn Braille. Most people I encounter have no idea I'm blind. I don't try to hide it but I don't try to advertise it, either. If you looked at my house the only evidence you'd see that a blind person lives there is an elastic band wrapped around the salt shaker so I can tell it's not the pepper shaker and an elastic band around the shampoo bottle so I can tell it's not conditioner. Make the changes you *want* to, not the changes *expected* of you.
Nikanoru181 3 points 1y ago
Thank you for this, I dont know why my mind jumped to brail when there are so many accesibility programs and apps available.

I am totally going to use the elastic band ideal by the way, that is gold.
DrillInstructorJan 3 points 1y ago
I don't know about boring, I wish I had extra days in the week to spend asleep!
OldManOnFire 7 points 1y ago
Before I lost my eyesight there was never enough time to do everything I wanted to do. Things got put on hold.

When I got the diagnosis I felt like I got put on hold.

If I want to swim a few laps I have to wait for a ride to the pool. If I want to make a curried egg omelette I have to wait for a ride to the store. If I want to know how the Mandolorian and Baby Yoda got out of the underwater cage I have to wait until my son watches the episode and explains it to me.

Maybe boring isn't the right word. Life goes on, after all. The difference between then and now is spontaneity. I used to decide when the time was right, now I'm waiting for other people to do things I used to do for myself.

By the way Jan, I really liked your response to OP. I wish I could have upvoted it more than once!
DrillInstructorJan 4 points 1y ago
Well that's very nice of you to say!
TwoSunsRise 3 points 1y ago
Hi there, sorry to butt in but I saw your comment about the mandalorian. We love that show in our house hold and have people with almost no vision who enjoy it as well! Just wanted to make sure you knew about the audio description that's available on Disney+ for all of thier new content and much of thier older stuff too. You have to turn it on but it's there. I wouldn't want you missing out on any other baby yoda adventures! 🙂
TwoSunsRise 6 points 1y ago
Does she use an iPhone or Samsung? I don’t know anything about Samsung but iPhone has voiceover, which is a built in feature that makes the phone and text on the phone accessible to the blind. I would start learning how to use it as soon as possible since access to a phone and internet will keep avenues open and prevent feelings of isolation and being disconnected from the world. It will also keep your wife independent which is very important.
Nikanoru181 3 points 1y ago
Samsung right now, they have an app Talkback that we started practicing with last night. You are absolutely right, last thing I wamt is for her to feel isolated and disconnected.
TwoSunsRise 2 points 1y ago
Great! We've never used Samsung but I know they have similar features as iPhone. Aside from email, text, etc the phone is a great way to continue reading, if that's something she enjoys.
1eyedwillyswife 3 points 1y ago
Samsung also has accessibility features.
BIIANSU 5 points 1y ago
Consider reaching out to charities, specific to the blind. They can be a great resource.
1eyedwillyswife 4 points 1y ago
There are lots of resources out there, but I personally find the a lot of peace during trauma when I can hear others tell their stories. While not representative of the whole blind community, Molly Burke has some fantastic videos about her experiences and resources. I believe she is also close in age to your wife (27 or 28) so it might be comforting to listen to the stories of someone who already has some similarities, and with whom she may relate.

Do listen to others on this thread for more detailed advice! This is just something that could ease the emotional transition.
auntmaggie 3 points 1y ago
I work for a non-profit called Hadley Institute for the Blind and Visually Impaired. We offer lots of online workshops—all for free—including:

* how to use features on the iPhone or Android devices;
* how to use a number of computer programs with screen-readers;
* how Alexa/Echo can be helpful;
* how to adapt your home and everyday living;
* info about guide dogs;
* info about employment and starting a business;
* tips for games and recreation;
* and, of course, braille (this is how the organization started, 100 years ago).
* There's a great series on adjusting to vision loss, too—both for the person with visual impairment and for family/friends.

Anyone can sign up for free at $1, and everything is completely free, always.

Hope this helps.
AllHarlowsEve 3 points 1y ago
The state agency would obviously be the best place to start, but you could also contact the ACB, the American Council of the Blind, or the NFB, the National Federation of the Blind, in your state. I'm not a big fan of either for a variety of reasons, but if your wife's only blind and vibes with it, they can be great help for her to gain more independence.

Also, the facebook groups for blind users of x technology tend to be good, but also apple based. Most of us use iPhones because they're more intuitive than talkback can be, but obviously you don't need to go out and buy her a new phone this second. Whoever she gets linked up with should also help teach her to use talkback and NVDA or JAWS for her computer, assuming she's got Windows.
[deleted] [OP] 3 points 1y ago
[deleted]
WorldlyLingonberry40 2 points 1y ago
Help her by encouraging rehab training. Check out LCB and CCB in Google. The sooner she goes the better.
Otherwise_Computer79 1 points 1y ago
May I ask what is wrong with ur wife whats her condition
Nikanoru181 1 points 1y ago
Diabetic retinopathy, retina became detatched due to blood vessels being attacked by blood sugar behind the eye. Was able to reattach with a surgery + laser treatment, however vision was not able to be fully restored.
Otherwise_Computer79 1 points 1y ago
I hate to hear that it is a truly offal disease and most optometrist tend to kind of blow it off when u tell them ur seeing floaters they just want to right another perscription and send u out the door at least from my aunts experience.....did it give ur wife a warning or did she just lose her vision all together...thank u for replying by the way
rumster 1 points 1y ago
To provide extra help, please let us know your location.
Nikanoru181 1 points 1y ago
Kansas City Ks
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