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Blind and Visually Impaired Community

Full History - 2019 - 07 - 05 - ID#c9o915
13
Advice for person just losing sight? (self.Blind)
submitted by Forceflow24
Long story short: My mom went in for heart surgery, as she was about to leave the Doctors informed her they left a needle in her heart. They had to perform another surgery to get the needle out, and in the process developed a clot, which caused massive swelling. The doctors are now saying she has nerve damage ( permanent damage in left eye, 10-20 percent function in right eye). She was already freaking out about the needle left in her heart, now finding out she wont ever get her sight back i can see the depression setting in. What steps should I start taking to help her transition. The hospital seems to be ignoring the blindness and focusing on getting her discharged, so I haven't had any advice yet. The first thing she asked for was a talking watch because she never knows what time it it. Any other basics I should be thinking about?
[deleted] 9 points 4y ago
[deleted]
FlowerPower465 4 points 4y ago
Exactly. Also, if she is 55 or older, she may qualify for the Commission for the Blind’s Independent Living Program: https://ocfs.ny.gov/main/cb/indep_living.asp
B-dub31 6 points 4y ago
I lost about 60% of my visual field and a great deal of my acuity due to optic nerve damage caused by a blood clot in my brain at age 38. Your mom needs to demand to consult a neuro-ophthalmologist immediately. She needs to get everything documented and then as soon as she is able, consult her own specialist for a second opinion. You may have a good malpractice case on your hands. As soon as she gets a diagnosis of legal blindness or confirmation of the true extent of her vision loss, she should apply for disability benefits, because even with clear cut cases it takes months to process. Even if she ultimately returns to work, the SSA provides incentives and resources to help disabled workers return to employment. She also needs to see a low vision specialist. Mine referred to me to services like orientation and mobility training, vocational rehab, tax incentives for the blind, etc. And also keep check on her mental health. I went though a heck of a grief period where I told my wife I wish I had just died. Living with partial sight was initially debilitating and it took a toll on my mental health. After using resources and relearning how to do things and just getting used to living with my limitations, things got easier and even though things are different now,I am thankful I am still here with my family and have a fulfilling life.
KingWithoutClothes 5 points 4y ago
Uhm, this is only somewhat related to your question but... shouldn't you be suing the hospital? This is outrageous and absolutely unacceptable. They took away her sight and now they're just not gonna give a rat's ass??
Forceflow24 [OP] 2 points 4y ago
Yeah it has come up, she has still not fully recovered and wants to get out of the hospital first, then figure out legal strategy. She is worried about something going wrong and not getting good care from the hospital.
Safe_Ladder 3 points 4y ago
Smart move. I would definitely take up contact with a lawyer already, though. Just in case he knows of certain things or documents you would need to ease the lawsuit. Perhaps you even have to file a complaint in a certain timeframe (maybe even formally make a complaint to a doctor while in the hospital?) and you don't want to miss out on any little detail that could help.

I know it's not fun to think of it in terms of money, but eyesight is crucial and without a doubt this was a medical blunder that rendered a person's functionality in life to a fraction of what it was before, and if she can get a hefty sum in damages, I'm sure that could ease her potential depression. See to it that she uses it to make her life more comfortable and enjoyable.
TheBlindBookLover 2 points 4y ago
To add to what others have said, any compensation will be extremely helpful. Being blind can get expensive with the high cost of assistive technology and other related costs.
KingWithoutClothes 1 points 4y ago
I mean, I totally understand that after what they've done to her...
KrolPolski 5 points 4y ago
I would get in touch with the local affiliate of the NFB. They were a huge help in my emotional adjustment to blindness. nfb.org

Where are you located?
Forceflow24 [OP] 1 points 4y ago
Thank you, looking into this. Located in New York.
KrolPolski 3 points 4y ago
https://nfbny.org is your state affiliate.
spedangel84 1 points 4y ago
Sorry about the other comment, didn’t realize that someone had already suggested the NFB.
BlueRock956 4 points 4y ago
If you are with her, Netflix has a selection of shows and movies that are audio described. You can check this out in the language section.
solar-cabin 3 points 4y ago
First- talk to a lawyer about malpractice and suing the hospital that left the needle in.

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Second- there are lots of products out there to help the visually impaired but most are pricey.

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If you mom has an Iphone or computer there are lots of free apps and you can start on windows by turning on her Speech recognition so she can use the computer offline and on through voice commands. $1

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You ca also download Alexa for free for any PC. $1

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Third and most important is to make yourself available when they need help. Most people want to be independent and older people don't like asking for help even when they really need it. So make it a routine to call your mom a couple times a day to see how things are going and if there is anything she needs and visit as you can to check that the house is safe and clean.
BlueRock956 3 points 4y ago
Hi, once she gets home, it would be quite useful to have an Echo device, Alexa can be quite useful. It’s simple to operate once it has been set up. On there, she can listen to music, audio books, pot casts, news, radio stations, play games, and the list is extensive. You can even have it set up so that it’ll make calls to phones or other Alexa units.
RosyShine 3 points 4y ago
blind from birth

I recommend a talking scale, kitchen if she likes cooking, and bathroom if that is something important to her.

braille/large print playing cards so she has something portable that she can do with others.

maybe some sort of liquid indicator at least for the first month or so.
Forceflow24 [OP] 1 points 4y ago
Thank You. She has already mentioned how she is upset she can't drive, go shopping, cook, use the phone etc anymore. Will have to figure these things out.
MostlyBlindGamer 2 points 4y ago
What kind of phone does she have? If she has an iPhone you should turn on Voiceover. If she has an Android phone, the equivalent is TalkBack.

The bottom line is her phone can read the screen. She can make calls, text, everything.
rpglb_caturria 2 points 4y ago
I realize this isn't exactly the kind of response you are looking for, but talk to a lawyer. If they botched her operation, then botched the second one such that it caused her to go blind, then I should hope you can get some compensation. It'll come in handy; there's a lot of expense associated with disability and it's not always covered.
HDMILex 2 points 4y ago
First order of business: hire a good lawyer and sue the hospital.

Second order of business: use the money you receive in compensation to invest in Aira. aira.io. That service is almost equal to actual sight.
spedangel84 1 points 4y ago
I’m the president of one of the local chapters of the national Federation of the blind, Texas affiliate. The national Federation of the blind has lawyers who will consult with you on what you should do, and we also have tons and tons of resources that I can’t even begin to name, just go to www.nfb.org
And there’s plenty of resources there for you. You can become a member of your local chapter for around five dollars a year, and you’ll learn a ton there and can ask many more people some questions as well. And once your mom gets out of the hospital and recovers enough to travel, she can go to the local chapter meetings with you. We do all kinds of things as Federation family members, we definitely advocate for the rights of the blind and visually impaired, and we have plenty of ideas and tons of networking that can be done as well.
Blind_Not_Clumsy 1 points 4y ago
When I lost my vision, I immediately went to my Commission for the Blind and Visually Impaired office here in Omaha. They were able to help me get started with a white cane, helped me set my phone and computer up to read EVERYTHING to me, and provided a projector for my office so I could do my work.

I also suggest finding information about support groups. I wish I had, since I became visually impaired later in life.
MercySound 1 points 4y ago
Wait will she still have some sight left? Or is the rest of it going as well? I would invest in a good flashlight. They are so much better these days compared to what you use on your phone.
Forceflow24 [OP] 1 points 4y ago
She had a blood clot that caused swelling in her head. They are saying based on the x rays the swelling caused damage to the optic nerves, and that any damage to the nerves is almost always permanent. We haven't been able to get an optometrist in to fully examine her so we don't know how bad the damage is. Right now she is able to see shadows and certain colors out of her right eye.
smkelly 5 points 4y ago
> optometrist

You may be just using the wrong word here, but just a heads up that you'll actually want an ophthalmologist here. One that specializes in neurology.

More details on opthamologists and their subspecialties $1.
Forceflow24 [OP] 1 points 4y ago
Thank you I think I'm using the wrong word. Looking into this now.
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