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Blind and Visually Impaired Community

Full History - 2017 - 09 - 08 - ID#6yyvtm
9
Help? (self.Blind)
submitted by throwaway5222222
Sorry for any errors, done in the middle of the night through tears on mobile so.

I'm sorry if this is the wrong place if anyone could recommend a better place that would be good.

I'm just wondering if anyone can give me some advice. My SO is losing their sight. Over 50% of total vision has disappeared in the last six months and it is going to continue to disappear. They're having a hard time coping and I'm worried as to what might happen.

I'm just wondering if there's anything I could help do for them to make things easier when it finally happens, and I'm wondering what might change in our lives aside from the obvious big things, I'm wondering about smaller things that have big impacts but I might not think of.

Any general advice is much appreciated as well or just things you wish you knew or were told before something happened.
KillerLag 9 points 5y ago
If you can also tell us what the cause of vision loss is, that would be helpful.

With vision loss, people often go through the 5 stages of grief. They may even go through it more than once, as they come to accept low vision and then lose more.

Statistically, people are actually more afraid to go blind than to die. A good deal of that is because of the fear of the unknown, and not knowing what they will do with their lives. Support from family and friends helps a great deal with someone getting through this.

One thing they should definitely consider is getting training for their vision loss now. It isn't the optimal time (especially if they haven't accepted it yet), but the earlier the training, the better.

Depending on where you live (country and state), there are different agencies to help. Ask your doctor to make a referral to one of those agencies, although sometimes they can also self-refer (although many will also require an eye report).

Orientation and Mobility training (O&M) is learning how to get around safely. Indoors, outdoors, and eventually using public transit (and guide dogs if that is their interest). That is a fairly important skill, as everyone has to travel at some point in time, even if it is just going from the bedroom to the bathroom.

Independent Living Skills (ILS) is learning more day to day living stuff (although that one has different names, depending on where you are from). That can include things like cooking, cleaning, money ID, getting dressed, and even Braille if they are interested. Also rather important, as these are things people do on a day by day basis.

In terms of technology, there is a lot nowadays to make things more accessible. Does your SO use an iPhone? If they do, it already has the acessibility technology built in. Search for how to active VoiceOver and watch some videos on YouTube to get the basics.

If you have any other questions, feel free to post on here or you can message me directly.

EDIT: One important thing I forgot to mention.... they may feel their life is over and they are useless, because they need to ask for help for simple tasks. That is very common, especially early in the process when they haven't gotten any training yet on how to do things with vision loss. Assure them that they can learn new skills and continue living their life. I always tell my clients that they can still often do what they used to do, it's just learning how to do it differently. A few years ago, my coworkers went with a group of young adults and did a Obstacle Course Race with them to show them (and others) that vision loss isn't necessarily a barrier to doing things.
throwaway5222222 [OP] 1 points 5y ago
Thankyou so much! I'll definitely look into the agencies, they sound like a very good idea to start while they can still see partially.
And I'm sorry I didn't mention it, they are going blind due to neurology. They have a swelling in their brain which is causing damage. I'm not entirely sure how is happening, but there isn't damage to the eye itself or the optic nerve, it's due to the brain's way of processing the info
brass444 1 points 5y ago
That's the same way (it sounds like) my spouse lost their sight. It's tough stuff but sounds like they are fortunate to have a partner like you by their side. Great advice above. My SO went back to work after going through the training mentioned above. They travel by themselves often.
Zach_of_Spades 2 points 5y ago
As hard as this is, just keep in mind that life doesn't end due to vision loss. Make sure your s/o keeps up hobbies, friendship and interests. Don't let them slack on doing the dishes. The worst thing for anyone- blind or not- is to feel useless. Make sure they know you still need their help and value their contribution. They may not be able to drive to the store, but they can still put away the groceries.
Best of luck to both of you.
Lucias12 2 points 5y ago
Thanks, I think we might need the luck! I'll do my best to get them to do normal things as it were yea.
brass444 1 points 5y ago
In the little things category: consider Sirius XM where they will have access to all news, music, sports etc. They will also qualify for free newspapers. Audio books are great. Also audio description is huge now. All Netflix original productions and most major movies have audio description. (When you go to a movie what they can't see is described professionally to them) Learn Voiceover if they have an iPhone/Mac. Not sure where you are but Comcast has a audio feature for TV use. Verizon is trying to catch up. Also Microsoft has a brand new app called Seeing AI. It's free and best thing on the market. I know it's hard for you too. It is a loss for both of you but there's lots of us out here. ❤️
throwaway5222222 [OP] 1 points 5y ago
Thankyou so much, I'll have a look into it and see what is available for our area. They do use Apple products so ill see if I can show them how to use it once I've learned myself. Thanks!
brass444 1 points 5y ago
Hoping you and yours are doing okay!
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