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Blind and Visually Impaired Community

Full History - 2020 - 12 - 14 - ID#kd72kb
9
Newly blind partner (self.Blind)
submitted by Xena66
My partner was blinded about 10 months ago by injury. I’m looking for any advice on adjusting or good resources online too look at for advice. He was fairly athletic before this, enjoyed exercising, playing basketball, etc and he doesn’t feel like he can do any of those things anymore. He also struggles with and gets really annoyed by the phone settings for blind people. Like the voice that directs him and reads what’s on the screen annoys him and he still has trouble using the phone even with the voice. He tends to just have me read messages and make calls for him. Is Braille something he should learn and how would one even do that if they have no money? He’s bored quite often and out of shape compared to how he used to be (this is not my complaint, he’s frustrated feeling like he can’t play basketball or exercise the same way anymore). I am not really looking for specific advice, just any general advice on being newly blind and any good resources to check out. I do research on google quite often, but I’m still left frustrated on helpful things to do.
DrillInstructorJan 3 points 2y ago
I've been there, it sucks. The getting bored and sitting around doing nothing and getting more and more pissed off is pretty common. I know it's what I did.

Exercise is totally doable and completely essential. No, you probably can't play basketball, but when there is no virus I do something exercisey every other day at least. Normally running, with a partner, but you can also hit the gym. I have buddies who like swimming. I'm not that into it, but it's great exercise and burns through calories super fast (actually I find it counterproductive as it makes me really hungry!) Treadmill control panels are a pain as they're often touch screens but you can usually figure something out, just ask the gym people. As you will probably be aware a lot of people with various disabilities get very out of shape because nobody's putting them under any pressure to try, but exercise is good for all kinds of reasons. I'm five feet one (in my platform sneakers) and 106 pounds and on a good day I can do 5 chin ups, which is not bad for a tiny woman.

How do you do it? Same way do you do anything, you plan. If you are not a natural planner, get used to being one. Most stuff is doable with planning. Let's say I wanted to go to a gym I'd never been to before. I'd call the gym, give them the rundown on the situation, and organise a time to go over there. I'd book a cab or an uber, go over there and get shown around. We'd figure out doable things, which is most things, which most gyms will do for new members anyway. Ideally you have good cane skills and can get around the place solo.

Yes it's planning, yes it's work, it's a pain in the backside, the reality is you now have two jobs, your normal job and the disability. You would never choose it, can't quit, work all day every day and don't get paid. It sucks, but you do it because the alternative is the situation you're in right now, which is horrible.

The two things you need are phone and computer ability, and cane ability. At ten months it's way past due time to get used to the accessibility features on the phone. One of my buddies is only 16 and her dad keeps reading her phone to her, and I yell at him for it. Don't do that. You need to be able to book ubers, check your messages, send emails and surf the web. It is slow and it sucks but again, the alternative is where you are right now. Also get a cane, learn how to use it, and you can at least do basic travel stuff.

I'm more than twenty years in and I never learned braille, and I have a career I'm very happy with but honestly I probably should have learned it. It's not essential, it's nice to have.

Anyway there it is. Sorry stream of consciousness. But you can solve it.
Xena66 [OP] 1 points 2y ago
Thank you so much for this comment!!

Sitting around pissed off is exactly what he’s doing now. I understand why. I’m not blind so I can’t fully understand, but I do have disabilities and can understand the frustration of not being able to do things I once was. But I also need to start pushing him into more of an acceptance phase at this point.

We absolutely can’t afford a gym right now, but as soon as he gets some disability we should be able to and will look into going! Are there particular areas you find it easier to go running when you are not in a gym?
DrillInstructorJan 2 points 2y ago
I'm in the UK and in a town with a lot of cycle paths, so we tend to go running on those and keep away from the roads. Not that it's really an issue to go on sidewalks, there's just longer uninterrupted stretches of cycle paths. They go through parks and there are lots of dog walkers and people not really understanding we can't part and go either side of them so there have been occasional dog lead tangling incidents. Nothing worse than that though. The biggest issue with running is that I need a partner and I always feel like I'm imposing, although everyone I've run with has always said it gave them a reason to do it. I can't go running with my partner as he's massively taller than me (who isn't!) and I have to sprint to keep up with his jogging, so I have to find a buddy. But it's out in the fresh air, getting some exercise, some good endorphins, staying in shape and meeting a buddy. Some places have it difficult during the virus, but still.

I don't really go for "acceptance" so much, nobody's ever going to like it. What you can do is find a lot of ways to live with not liking it. Eventually you look back on an hour, a day, a few days, whatever, and think oh, I didn't really have a major downer about it in that time. That time gets longer and longer. I don't think it ever becomes infinite, personally I still totally have moments where I grind my teeth, but only on the same level that politicians make me grind my teeth!

What's hard is that the way you get to that point is by actually doing things, getting off your backside and making things happen. Like I say, going places and doing things is mainly a feat of planning and yes, a million times yes, it is effort you don't want to spend, and it is horrible and soul sucking especially at a time when you're feeling really down, but you just have to find a way to make yourself do it. People sit around waiting to magically feel better so they can have their lives back, and you won't ever feel better if you just sit around doing nothing. You have to make stuff happen or you won't have the feeling of achievement that makes it okay. It's really hard and there's no way to make it great, but it does work.
KillerLag 3 points 2y ago
Braille can be helpful, yes. The cost of Braille output displays can be costly. Does your state have funding for equipment?

Has he been getting rehabilitation training?

If he is looking for some exercise, there are some audio led workouts that were posted before, but not sure if they are still up. Seeing a personal trainer for the first part to reinforce basic skills/positions can also be useful, especially when someone is/was used to looking in the mirror to check their form.
Xena66 [OP] 5 points 2y ago
I feel like there’s legitimately no resources for poor people. He’s only seen a doctor once since he lost his eye sight because we live in the US and don’t have health insurance. He should hopefully be getting disability & Medicaid soon which will help a lot, but he’s had no medical treatment or rehabilitation of any kind as of right now. We definitely can’t afford a personal trainer, as of right now I’m not sure I have rent for the first, but I will look into the exercise audio, thank you.

I’m going to research and see if my state has funding. I’ve been researching disability so heavily (i know it seems like he should already be on it, but i have a lot of health issues myself and applying for him was a process for me) so I didn’t even think to look into funding for Braille. I live in Florida which is really bad about funding social services of any kind, but I’m going to check it out
KillerLag 3 points 2y ago
Agencies that can provide rehab service. Check to see which is closest to you guys.

https://beyondvisionloss.org/florida-agencies-serving-the-blind-locations/

Hadley can do training with braille through distance ed.

https://hadley.edu/learn?topic_id=15

Hope those links help.
Xena66 [OP] 1 points 2y ago
Thank you!
KillerLag 2 points 2y ago
No problems. Best of luck! It can be a difficult journey, but remind him that things would get better as he learns new skills.
chovihanni-VIP 2 points 2y ago
Vocational Rehabilitation is a Federal Program. That's where you will find help. But he also has to be willing to go back to work at some time...even if a few hours a week. It will not affect disability. I have been in the program 2 years now. Best thing I ever did
Xena66 [OP] 1 points 2y ago
Thank you! He’s not opposed to returning to work if it’s possible, it just seems so impossible right now. He’s definitely most concerned about living skills right now. He can’t see anything except shadows. Like if we are in a brightly lit room, he can see my profile in front of him but can’t see details like facial features, clothes, hair, etc just kinda like the outline of a person in front of him. Anything less than brightly lit and he wouldn’t see me at all. And sometimes the shadows are misleading, like he’ll think something is coming towards him when nothing is. So right now he’s struggling with some basic tasks and needs to get back some living skills before anything. I did see on the disability website that he could work a little and still keep disability, but yeah living skills first. I will definitely check this out!
LibraryGeek 1 points 2y ago
I was told I didn't have to go back to work. They were helping me with living skills, not work skills. I got some equipment and Zoomtext. Of course since I don't work - I cannot get the updated Zoomtext that works with MS 10.
(blind but can see fingers 3 feet away in about 10% of my visual field with one eye. The other one is blurry and no one knows why. It has varied over the years. It has improved to 60 or 80,)
chovihanni-VIP 1 points 2y ago
Yes. If you only want living skills you don't have to sign a contract to go back to work. I want to work and needed rehabilitation. I have no left visual field in either eye due to traumatic brain injury as well as double vision. I only have limited right visual field with nothing usable from 8 ft on up. I am now a self employed holistic hair care specialist and just finished my first semester towards my associates in Complementary Alternative medicine. Reach for that stars. I live independently and am building my own accessible healing home as well
chovihanni-VIP 2 points 2y ago
He may be experiencing Charles Bonnet Syndrome as well. I also suffer with that. My vision loss was in 2013 I have just now been able to work a little. Vision rehab will help and orientation and mobility specialists. Learning to cope is what helped me most. Mine is from a traumatic Brain Injury so I have other issues as well. Learning to live has helped so much. Back to work self employed, just finished semester of college and building my own accessible home. On my own. My tape measure talks, I have a click rule and learned to listen as well as use accessibility. I was in a bed for 3 years. He can live again. Acceptance is key. Learn to live the life you are dealt and quit trying to live like you were it dreamed. This is the new life. Confidence is key.
chovihanni-VIP 2 points 2y ago
If you are in the states Vocational Rehabilitation will pay for visual aids and training. My blindness is from brain trauma so I fully understand the overload from accessibility. Once you learn to listen, it is now an essential skill for your boyfriend to master for everything in life. Their are all sports for Visually Impaired People all over the united states. TBI Hospitals of Indiana should be a good on line source to start with for sports. Beap Ball is another sport he may be interested in. Find a rehabilitation center for blind and low vision. I attended Bosma. Best thing I ever did. Orientation and Mobility may be needed. Braille is useful but can be time consuming. And if it gets to the electronic Braille displays they are expensive. National Federation for the Blind will have resources. Your state should also have a blind resource center.
siriuslylupin6 1 points 2y ago
Exercise is possible walking is fun bring some music and an apple watch or tracker. I do like 3 miles a day actually going to do this soon myself.

Training sounds like what he needs and maybe some good blind counseling. Acceptance is important.

What did he do maybe it is still possible.
ThisBlindChickReads 1 points 2y ago
I think the main thing to give is emotional support. Losing your vision can feel like going through the death of a loved one ... The grief cycle can restart every time you open your eyes and forget that you just cant do things you once took for granted.

Give him time and patience ... When he is frustrated at things let him be frustrated and remember he is not yelling at you he is yelling at the blindness. Seeing the right therapist can help him learn better ways to work through those tougher moments.
PungentMushrooms 1 points 2y ago
When it comes to voiceover on his phone or the screen reader on a computer yes, it's quite a learning curve but you can genuinely get really good at it and be efficient with technology once you know what you're doing. I've only been using screen readers for about a year and I'm still a little uncomfortable with other people near me hearing the voice over voice. I'm not sure if that's what he's feeling
IronDominion 1 points 2y ago
Adding onto what the other commenter said, look into resources by state. Some offer these resources such as training and technology for free if he is seeking employment or education in some form or another
[deleted] 1 points 2y ago
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