Blind and Visually Impaired Community
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Need help with neurological vision issues. (self.Blind)
submitted by Icy_Accountant_8197
First off, I'll just say that physically my eyes work fine for the most part with glasses. Most of my vision issues and other sensory issues are neurological. In certain situations it is difficult for me to process what I'm seeing even though my eyesight itself is fine and sometimes this causes issues. For example, often when I'm in a busy area or some place with a lot of lights it is difficult for me to focus and I often miss things or I don't recognize when something is right in front of me unless it is pointed out to me, I often trip over things or walk into things. In general I have terrible spacial awareness.
Frequently I end up exhausted and overstimulated just by trying to figure out what's going on around me. And honestly, sometimes it feels like it's not worth the trouble. Sometimes to the extent that I just feel like avoiding going out entirely. And all these issues are especially bad when I'm already tired or stressed out.
As far as I know, I don't really know anybody who has these same issues. So really I think I'm just looking for anybody who might have any tips or encouragement or anything that helps them personally. Anything. I've been going through a lot of other stuff lately and all of this is just getting worse.
Frequently I end up exhausted and overstimulated just by trying to figure out what's going on around me. And honestly, sometimes it feels like it's not worth the trouble. Sometimes to the extent that I just feel like avoiding going out entirely. And all these issues are especially bad when I'm already tired or stressed out.
As far as I know, I don't really know anybody who has these same issues. So really I think I'm just looking for anybody who might have any tips or encouragement or anything that helps them personally. Anything. I've been going through a lot of other stuff lately and all of this is just getting worse.
Trick-Regret-493 7 points 1y ago
Hey it sounds like our vision is similar in the neurological sense, I'm blind because of limited field. idrk how to help help. Just know your not the only one.
[deleted] 1 points 1y ago
[deleted]
yoyo2718 5 points 1y ago
You’re not alone. My situation is a little different in that my vision issues come from a head injury, but similar in that it is neurological rather than the eye specifically.I have some of the same symptoms, some a little different, but I find that it is definitely worse if I’m stressed or tired. For what it’s worth, I use a lot of compensation tricks and adaptive tech tools that make my life a lot easier. Maybe look into talking with. A neurologist or neurooptometrist. Your local association for the blind and visually impaired can also probably help teach you how to adapt. Hang in there.
Icy_Accountant_8197 [OP] 1 points 1y ago
If you don't mind, what are some of the things that help you?
yoyo2718 1 points 1y ago
Sure, I sent you a private message.
changeneverhappens 5 points 1y ago
Hi Op! I'm a teacher for the Visually Impaired and work primarily with children with Cortical Visual Impairment, which is a brain based condition.
I'd highly recommend reading the article below and if any of it resonates, I'd be happy to talk to you more!
most brain based VIs benefit from similar interventions and supports.
While CVI and other NVIs are common in people with other disabilities, they can also occur in otherwise typically developing people.
If any of this resonates, I'd be happy to set up a phone call during the week to chat more. I work for an agency that provides Blind services and eval for CVI weekly.
Just a heads up: most of the literature available on CVI is about children. That does not mean that the supports wouldn't benefit an adult, they just need to be adjusted to be age appropriate
https://www.pathstoliteracy.org/resources/cortical-visual-impairment-cvi-fact-sheet-families-professionals
I'd highly recommend reading the article below and if any of it resonates, I'd be happy to talk to you more!
most brain based VIs benefit from similar interventions and supports.
While CVI and other NVIs are common in people with other disabilities, they can also occur in otherwise typically developing people.
If any of this resonates, I'd be happy to set up a phone call during the week to chat more. I work for an agency that provides Blind services and eval for CVI weekly.
Just a heads up: most of the literature available on CVI is about children. That does not mean that the supports wouldn't benefit an adult, they just need to be adjusted to be age appropriate
https://www.pathstoliteracy.org/resources/cortical-visual-impairment-cvi-fact-sheet-families-professionals
Icy_Accountant_8197 [OP] 3 points 1y ago
Oh wow, thank you for this. I've heard of the term CVI before but only in reference to children as you mention, and I don't know much about it. It does sound like the issues I have though.
changeneverhappens 3 points 1y ago
You may also hear cerebral visual impairment. Previously cerebral and cortical were used interchangeably but now cerebral is meant to refer to other neurological impairments.
Just an FYI as you read. Its not a switch that everyone has made yet.
If you'd like help locating resources in your area or region, feel free to DM me and I'll see what I can do!
Just an FYI as you read. Its not a switch that everyone has made yet.
If you'd like help locating resources in your area or region, feel free to DM me and I'll see what I can do!
Icy_Accountant_8197 [OP] 1 points 1y ago
Thank you, I sent you a DM.
astrolurus 2 points 1y ago
How might an adult get tested? It has been hypothesized my vision issues (especially field loss) are caused by my other neurological issues because they didn’t find anything on my last dilated exam
changeneverhappens 3 points 1y ago
If you resonate with any of the 10 CVI characteristics, you should meet with your ophthalmologist. It's still an unfamiliar condition for many medical professionals, so I'd recommend taking $1article with you.
I'd also recommended contacting PCVIS on their website (it's the website I linked above) to see if they can connect you with someone who performs CVI Ranges.
Typically it's an eval done by teachers of the Visually Impaired in schools, so finding it in a different setting may be tricky. If you're in TX I may be able to help connect you with a resource for an eval. There's been some drama in my field and so I'm unable to locate the list of nationally endorsed professionals who perform the CVI Range outside of schools.
If you're unable to find an evaluator, it's not the end of the world. As an adult you can read more about it and adapt your life as needed. Most CVI accommodations are pretty straight forward.
I'd highly recommend reading the PCVIS website and about Dr. Roman Lantzy. CVI Scotland and Texas School for the Blind and Visually Impaired are great resources as well.
Paths to Literacy has all kinds of ideas for adaptations. Theory give you an idea on how to adapt your daily life a bit.
Overall, I'd recommend keeping your visual work space clear and uncluttered. Solid, dark backgrounds, few distractions, and use brightly colored tape on colors that stick out to you to anchor your vision on areas in your home and life you need to be able to find.
Try looking at 1-10 items at a time on a solid background. At what point do you Visually lose your target? If you can do up to ten, try up to 20.
Now do it all Again on a busy background like an obnoxiously floral bedspread, beach towel, or the stupid patterned bowling shirt your uncle likes to wear.
Try getting a table lamp to provide a spotlight to hold your focus, especially when you're tired or your eyes hurt. It may help to turn the rest of the lights off in the room when using the lamp
If you find yourself getting upset or worked up because you're tired and your vision isn't working after a long day, take a brain break. Close your eyes and listen to some music you like. Make space for yourself.
These are just a few ideas to get you started, hope they help!
I'd also recommended contacting PCVIS on their website (it's the website I linked above) to see if they can connect you with someone who performs CVI Ranges.
Typically it's an eval done by teachers of the Visually Impaired in schools, so finding it in a different setting may be tricky. If you're in TX I may be able to help connect you with a resource for an eval. There's been some drama in my field and so I'm unable to locate the list of nationally endorsed professionals who perform the CVI Range outside of schools.
If you're unable to find an evaluator, it's not the end of the world. As an adult you can read more about it and adapt your life as needed. Most CVI accommodations are pretty straight forward.
I'd highly recommend reading the PCVIS website and about Dr. Roman Lantzy. CVI Scotland and Texas School for the Blind and Visually Impaired are great resources as well.
Paths to Literacy has all kinds of ideas for adaptations. Theory give you an idea on how to adapt your daily life a bit.
Overall, I'd recommend keeping your visual work space clear and uncluttered. Solid, dark backgrounds, few distractions, and use brightly colored tape on colors that stick out to you to anchor your vision on areas in your home and life you need to be able to find.
Try looking at 1-10 items at a time on a solid background. At what point do you Visually lose your target? If you can do up to ten, try up to 20.
Now do it all Again on a busy background like an obnoxiously floral bedspread, beach towel, or the stupid patterned bowling shirt your uncle likes to wear.
Try getting a table lamp to provide a spotlight to hold your focus, especially when you're tired or your eyes hurt. It may help to turn the rest of the lights off in the room when using the lamp
If you find yourself getting upset or worked up because you're tired and your vision isn't working after a long day, take a brain break. Close your eyes and listen to some music you like. Make space for yourself.
These are just a few ideas to get you started, hope they help!
astrolurus 2 points 1y ago
Thank you! Turns out I do many of those things already lol, just intuitively. Out of curiosity though, how do you differentiate between sensory processing issues and/or autism and CVI? I am autistic and there is a lot of overlap between many of the cvi symptoms/traits and autism/visual processing issues.
changeneverhappens 1 points 1y ago
A lot of sensory processing interventions overlap because they focus on reducing multi sensory complexity. Accommodating for your Autism reduces your multi sensory overload and may make it easier to use your vision.
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