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Blind and Visually Impaired Community

Full History - 2021 - 04 - 06 - ID#mln6tc
14
Going blind maybe. How to cope learn skills and handling emotional issues (self.Blind)
submitted by Key_Masterpiece3805
I have double vision that comes and goes and is getting progressively worse. Doctors have not been able to figure out whats going on. It was infrequent a few years ago but it has now accelerated/

When double vision goes away my vision used to be good 20/20. But of late even the best vision i have is still a little strained. If they cant figure out I suspect I will just get worse and eventually lose my sight without a diagnosis and treatment.

I am attempting to brace myself for this and asking here for guidance. What can i do to prepare mentally and start using aids. I am an a software architect and do some coding as well

Thankyou
Amonwilde 7 points 2y ago
Is it double vision? Or something underlying that? Does it go away when you cover up an eye?

You can start with magnification. On Mac OS, there's a Universal Access menu (use spotlight search) that will let you do things like turn on a magnifier and reverse colors. On Windows, you can use the built-in magnifier (press Win and the plus key) or buy somethign like ZoomText, which mnight be nice for a developer as you can magnify on one screen and have the other screen be normal for the full context.

After that, there's text to speech. If you have an iPhone, it's probably easiest to get started on that, as Voiceover has much less of a learning curve, in my opinion. Just say to Siri "turn on Voiceover," tap to hear what you touch and double tap to active items, three finger swipe to scrll, swipe left and right to move between elements.

Also just as a pep talk: there is life after vision loss. There will be a greiving process, but you will, by and large, be able to do the things that you want to do. Best of luck with the situation.
Key_Masterpiece3805 [OP] 1 points 2y ago
thankyou so much! its double vision both eyes, covering one does not help. waxes and wanes throughout the day
MaplePaws 3 points 2y ago
My situation is not that far from the one you find yourself in, though replace double vision with light sensitivity. Mine started after I got sick with Mono 4 years ago and my autonomic nervous system started to malfunction, which long story short is our current theory for why I am so light sensitive as my pupils are not reacting properly to light changes and are abnormally large according to the doctors. That said without the light sensitivity which has been getting worse over the 4 years and in the last several months I have noticed large starbursts around single points of light that are disorientingly big, I am only slightly near sighted and my eye health is excellent. My most recent appointment was Monday, so I still have a lot of unknowns but current prognosis is that my situation likely can't be reversed or even slowed, the doctor made it sound like the current information does not support a glaucoma though the way they were talking it is also not something that is ruled out.

Currently the plan is to look at glasses just in case we can find something that helps, and the doctor will be talking to their low vision specialist to see what recommendations they can offer me as it has gotten to the point that my vision is severely limiting my abilities without more tools. So I cannot offer you guidance, just that I am also facing the need to come to terms with similar emotions and feelings.
Key_Masterpiece3805 [OP] 3 points 2y ago
hugs from an internet stranger. I am trying to be hopeful. All these folks here seem to lead fulfilling and happy lives. No reason we cant too, if it comes to that.
MaplePaws 2 points 2y ago
I am pretty hopeful myself, I have actually been following Molly Burke and a couple other guide dog handlers for a few years now. I do actually have a service dog for other disabilities and realistically see myself applying to guide dog schools if it gets to that point, until then my trainer and I have figured out how to have my dog perform many of the needed roles for me so that I am not stranded on that front.

For me it is the fact that I love choir singing, and while I do primarily learn by sound but watching the conductor is a pretty important aspect of the performance. Or the fact that I do still enjoy video games, something I can do for now turning everything down to barely any light but the user interface and text more times than not is too small to read. Overall it is just things like that, which likely just need to be thought about creatively to allow me to continue to participate at least in the choir. At least with the nearly 15 years of experience I should have the practice to figure it out, it is just intimidating to think about and I know I am probably missing some things but it will come I am sure.
2ndChanceAtLife 3 points 2y ago
My step-son has some type of corneal scarring that has defied explanation so far. He's completely blind in his left eye and getting worse in his right eye. He's got an appt with a Houston eye doctor soon.

He's the reason I joined this group. I don't know how to help him.

You aren't alone. Technology is amazing. Prayers for you to live a fulfilling independent life.
Key_Masterpiece3805 [OP] 1 points 2y ago
thankyou
[deleted] 2 points 2y ago
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Key_Masterpiece3805 [OP] 1 points 2y ago
If your vision problems are getting worse you must sit them down and ask for their support to come up with a plan as a family. I suspect your vision issues are making them worry a LOT, but they want to minimize it so as to not freak you out.

I did that with that my kids sometimes. It probably worked very well when my kids were young, but less so not that they are older and able to reason.

I cant say what words to use when u talk to them, since I am not very good at this sort of thing. But someone here with better EQ can perhaps chime in. :)
Lyliana1277 2 points 2y ago
Not sure if you have other symptoms as well, but when I was tested for MS I was asked about double vision and eye issues. Hopefully it’s not that, but something to look into if your doctors haven’t already.

I have keratoconus and have had issues with my vision progressively degrading since my late teens. I was finally diagnosed in my late 20s and it was devastating knowing my eyes would continue to get worse as I aged and that I would likely need surgical procedures in the future. Up until I was able to start seeing doctors who understood the disease, eye exams always resulted in emotional breakdowns from frustration and a feeling of loss.

I highly recommend getting into therapy if you aren’t already. Talking about things coming up as you learn to cope and adjust can help. Finding online communities of people dealing with similar conditions also helped me. Look for groups that are helpful, constructive, and mostly positive. Venting is helpful and sometimes informative for others, but I’ve seen a lot of chronic pain groups devolve into competitive pity parties, “life is terrible” posts, and overwhelmingly depressing environments. If I notice anything like that, I move on for my own mental health.

As far as technology, I use larger computer screens at work and increase font sizes. I set the brightness and contrast so I can see better. I always make sure rooms I’m in regularly and can control have bright enough lighting since I have issues with seeing in the dark. I’ve mostly given up driving unless absolutely necessary, especially at night. What you need may be different, but there are settings and computer themes you can use to help better with your challenges.

I use blue light filters on my phone to remove blue light, especially at night, to avoid eye strain. Voice to text is a lifesaver at times.

For eye health, I see my eye doctors for routine checks at least yearly to make sure the rest of my eye health is still good, since my mom found out she had glaucoma around my age. I also make sure to wear sunglasses when I’m outside for UV protection.

I hope you can figure out what is going on with your vision and wish you the best on your journey. I don’t know if any of this has been helpful with your condition, but I hope it’s given you some ideas and hope that you can get through it. Know you aren’t alone.
Key_Masterpiece3805 [OP] 2 points 2y ago
>Venting is helpful and sometimes informative for others, but I’ve seen a lot of chronic pain groups devolve into competitive pity parties,

I would think it comes from the frustration of not being taken seriously by other people. But I hear you I think I should be around positive people who have overcome problems and learned coping mechanisms.

I have been wondering if it is hyperinsulinemia because its highly correlated with eating Glucose is normal. But sometimes if I drink something super sweet when the issues has already started about an hour after a meal, the double-vision suddenly clears up for a while and comes back again in a bit.

Thanks for your tips, I am making it into my todo list
EvilChocolateCookie 1 points 2y ago
Little bit of a shameless plug here, as for learning to do things, I did write a book on the subject. Unfortunately, no one can tell you how to handle the emotional part, but I'm here to help if you ever need it.
Key_Masterpiece3805 [OP] 1 points 2y ago
what is the name of the book ? If it is against the rules of this sub, please DM me. thankyou
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