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What skills, resources and help should I be looking into? (self.Blind)
submitted by Monoxboogie13
Hello /r/blind , I have recently lost a good chunk of my field of vision. It will continue to deteriorate so I am looking for advice. I am looking for a guide or list of things to do and skills to learn in order to prepare. I have a few contacts for local services (Braille Institute etc) but I'm looking more for things to make my day to day easier. I have almost no peripheral and my central is being affected as well. I'm having trouble with a lot of day to day tasks. Apologies for the wall of text and thank you in advance for helping .
-shacklebolt- 3 points 6y ago
Get in touch with your local chapter of the [NFB]
(https://nfb.org//) as they will have a lot of the local resources.
Training wise, there are three national centers that provide multi-month courses that teach you everything (cooking and home management, cane travel, job and college prep, braille, computer skills, etc) that I would recommend looking into. [Blind, inc,]
(https://www.blindinc.org/) the [LCB,]
(http://www.louisianacenter.org/) and the [CCB.]
(http://coloradocenterfortheblind.org/) Even if you do not live in these states, you can travel to receive this training which may be more comprehensive and fast paced (and positive) than you can often receive locally.
Contact your department of rehab and open a case now. They can help you with a lot of things if you are a student, seeking employment, or trying to remain employed.
Locally you should also be looking at things like signing up for any classes you can, getting O&M instruction, etc as soon as possible. If you aren't using a white cane yet (or just starting) I highly recommend the free book [the care and feeding of the long white cane]
(https://nfb.org/images/nfb/publications/fr/fr15/issue1/f1501tc2.html) to start to understand cane travel.
If computer access is an issue, are you using [NVDA?]
(http://www.nvaccess.org/) (Or voiceover on mac.) There is a learning curve (and a lot of training materials and documentation) but you can get to the point of being able to use your computer just as well with your eyes shut or open with practice. There are also screen magnifiers, but if you are expecting to lose more vision now is the time to start to learn how to use a screen reader. (If you have a smartphone, there's also talkback on android and voiceover on iphones.)
What sorts of day to day issues are you having right now? List them off and we'll see specifically if we can help you with them. Even if you can think of 50 things I will try to get you 50 answers, so answer freely.
Where are you at in the process of beginning to receive training and services?
(https://nfb.org//) as they will have a lot of the local resources.
Training wise, there are three national centers that provide multi-month courses that teach you everything (cooking and home management, cane travel, job and college prep, braille, computer skills, etc) that I would recommend looking into. [Blind, inc,]
(https://www.blindinc.org/) the [LCB,]
(http://www.louisianacenter.org/) and the [CCB.]
(http://coloradocenterfortheblind.org/) Even if you do not live in these states, you can travel to receive this training which may be more comprehensive and fast paced (and positive) than you can often receive locally.
Contact your department of rehab and open a case now. They can help you with a lot of things if you are a student, seeking employment, or trying to remain employed.
Locally you should also be looking at things like signing up for any classes you can, getting O&M instruction, etc as soon as possible. If you aren't using a white cane yet (or just starting) I highly recommend the free book [the care and feeding of the long white cane]
(https://nfb.org/images/nfb/publications/fr/fr15/issue1/f1501tc2.html) to start to understand cane travel.
If computer access is an issue, are you using [NVDA?]
(http://www.nvaccess.org/) (Or voiceover on mac.) There is a learning curve (and a lot of training materials and documentation) but you can get to the point of being able to use your computer just as well with your eyes shut or open with practice. There are also screen magnifiers, but if you are expecting to lose more vision now is the time to start to learn how to use a screen reader. (If you have a smartphone, there's also talkback on android and voiceover on iphones.)
What sorts of day to day issues are you having right now? List them off and we'll see specifically if we can help you with them. Even if you can think of 50 things I will try to get you 50 answers, so answer freely.
Where are you at in the process of beginning to receive training and services?
Monoxboogie13 [OP] 1 points 6y ago
In regards to where I am in the process of training I am setting up appointments with a few facilities here. independent living resource center, Braille Institute and another acronym I can't really place right now. I don't know what exact services they offer but will find out when I have meetings with them. Some are coming to my apartment and my step mom has been an angel. She flew in from cross country to help facilitate this and transport me to and from the meetings and help keep me organized.
Monoxboogie13 [OP] 1 points 6y ago
Oh thank you! I am having trouble with a lot of things right now. It's all very new to me. I've had some training with the cane but since I still had some sight I wasn't fully relying on it. I have difficulty with cleaning, cooking, personal care like clipping fingernails. I can do them to a degree but it takes oodles of time now. Tips for fitness (had to cancel my gym membership). I am going to read all the materials you've given me. On top of it, I am having trouble emotionally dealing with it. I am seeing a therapist but any tips, advice or just how you cope with it would be greatly appreciate. I live alone and to be perfectly honest, I'm more than a little scared. Your reply has seriously lightened my mood. Thank you for taking the time to help me.
Ninja edit: Also if there's something I haven't mentioned that you think would be helpful please let me know. I am new to this whole thing and don't have a mentor so to speak
Ninja edit: Also if there's something I haven't mentioned that you think would be helpful please let me know. I am new to this whole thing and don't have a mentor so to speak
-shacklebolt- 2 points 6y ago
Alright, so I'll try to reply in parts as we break down the issue:
**TRAVEL**
- Some cane travel instruction is probably not enough, and many people who are partially sighted benefit from sleepshade (or blindfold) instruction at least some of the time. Residual vision, as you know, can be *so* misleading. The step to take now is to start using your cane 100% of the time out of the house, no excuses. (One of the reasons I recommend looking into the residential type programs is because of the emphasis on quality, comprehensive independence skills including cane travel for every situation.)
- I highly suggest getting the [NFB free cane]
(https://nfb.org/free-cane-program) or (if you have means and don't want it for free) [buying a fiberglass or carbon fiber cane from them instead.]
(https://ecommerce.nfb.org/asp/prodtype.asp?prodtype=1&ph=&keywords=&recor=&SearchFor=&PT_ID=) It is not often provided locally, it is lighter than the folding ambutech and revolution type cane you probably have, and if you don't like it stick it in your closet as a backup.
**CLEANING**
- Which cleaning tasks are you struggling with? The base of "cleaning" is going to be "keeping things neat." If you can't see things, finding them again and keeping areas clean can be an issue if you don't become consistent with where you set things down or put them away. From there, you just have to be methodical with your cleaning tasks. I vacuum the whole carpet, row by row, because I can't tell where the "dirty spots" are easily. I wipe the whole bathroom mirror on a regular basis. I wipe down the stove top after use to make sure there is no mess, and so on. For dish washing by hand, just quickly run your hand over the entire dish! Then you can feel if it is gunky in any spots.
What cleaning things aren't going quite right for you? Let me know.
**COOKING:**
How good of a cook were you to start with? What types of food are you cooking, and what sorts of issues are you encountering?
- One tool I use all the time is my silicone-coated locking tongs [like these.]
(https://www.amazon.com/StarPack-Premium-Silicone-Kitchen-12-Inch/dp/B00KDV5RZY/) (and I want to get silicone spatulas.) I use it to "feel" around my nonstick pans safely, easily flip things, etc.
- For measuring, there's [braille labeled]
(https://ecommerce.nfb.org/asp/product.asp?product=1137&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) measuring cups, or if you have color discrimination, [color coded ones.]
(https://www.amazon.com/Cooking-Measuring-Cups-Set-5/dp/B00I5PTBCA/r) There's also [bright measuring spoons]
(https://ecommerce.nfb.org/asp/product.asp?product=968&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) that you can label as well.
- A [talking food themometer]
(http://www.thermoworks.com/Talking-Thermometer) can help with tasks like "how done is this meat" and "will that turkey send my family to the hospital" lol. Very handy.
- For chopping things, I use one hand to hold the knife and have the other one OVER the non-sharp part of the knife (if you need to hold food) so there is absolutely no risk of your fingers being in the knife zone. If in doubt, go slow and carefully. I personally always leave my used knives on one side of the cutting board with the tip facing the board, and then I put all dirty knives on one specific spot on the side of my sink with the handles facing me. Some also tuck knives under the cutting board when stepping away from it.
- If you have trouble seeing liquids go into cups, a [liquid level indicator]
(https://ecommerce.nfb.org/asp/product.asp?product=1081&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) is good for hot cups, but just poke your finger over the rim for cold stuff.
- If you have trouble telling how done food is, FEEL, SMELL, and LISTEN to your food as it cooks often. Follow recipes until you're familiar with how long something will take. Use the thermometer if there is a safety concern. Crock pot recipes can be great because there are many easy ones to learn that have a huge window of forgiveness as far as cooking time, and a simple dial crock pot (off, low, high, warm) is very accessible.
- Microwave, dishwasher, stove and oven, etc buttons can all be labeled with [stick on bumps.]
(https://ecommerce.nfb.org/asp/product.asp?product=605&cat=111&ph=&keywords=&recor=&SearchFor=&PT_ID=) For example, I put bumps on the numbers, power, add minute, start and stop button for my microwave. I also put a button where the "light wash" for my dishwasher is and know that one click further is regular and another is heavy. (You can also use this to label a bunch of types of washing machines. Some are more accessible than others unfortunately.)
- Are you practiced with food shopping independently? Are you making plans for the week, grocery lists, etc? How do you manage knowing what is in your fridge, pantry, etc right now?
So that's a start of things I can think off the top of my head, but there's probably a bunch more. If you give me more feedback I will try to be more specific.
**Nail clipping** I haven't had an issue with. Just use the metal tip of the clipper to feel where your finger pad starts if you're not sure, pull AWAY from that area, and then clip. Then I file my nail with a filing board so they're round and even.
**Fitness**
- If you can get a gym membership you can do pretty much everything, but you will need someone to show you how to use the electric machines the first time. Always take your cane to the gym for safety. Outside of the gym, depends on what you like! A local running or hiking group would be a great start if you want some outdoor recreation. Personally I love going out for long walks, and exploring my town. The "care and feeding" book I recommended (in conjunction with quality, sufficient O&M instruction) will really help you build confidence in traveling independently with practice, and being outside and exercising is huge for your mental well being as well as physical.
- (BTW, for said exploring, there's a lot of good GPS software out there for blind people. I use Nearby Explorer Online for Android, Blindspot is very popular for iOS, just to start.)
- For **reading** tasks, [get KNFB reader.]
(http://www.knfbreader.com/) You might be able to get rehab to pay for it, although it is currently only $19.99 on android (the usual $99.99 on iOS.) It can read all sorts of printed text like mail, menus, etc. Great software for this job.
- If you aren't learning braille, get started. [I love this free book.]
(https://ecommerce.nfb.org/asp/product.asp?product=758&cat=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) It is grade 1 and grade 2 braille, NOT UEB, so you will eventually have to relearn some things (but a lot of material out there still exists in grade 2, and it is a good primer to technique, the alphabet, numbers, etc.) Some other [braille instruction books]
(https://ecommerce.nfb.org/asp/prodtype.asp?prodtype=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) are in UEB. Sign up for local classes, too!
- The NFB will send you a [free slate and stylus]
(https://nfb.org/free-slate-program) to write braille with. You can use braille to label all sorts of foods (spice jars, canned goods, bottles of sauces), cleaners and soaps and such, and items at home to start with! There is [stick on labeling tape]
(https://ecommerce.nfb.org/asp/product.asp?product=1045&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) [reusable labels with elastic]
(https://ecommerce.nfb.org/asp/product.asp?product=1048&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) and [reusable magnetic tape for cans.]
(https://ecommerce.nfb.org/asp/product.asp?product=1146&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) So a lot of options.
- If you haven't already, sign up for the [NLS]
(https://www.loc.gov/nls/) and [Bookshare]
(https://www.bookshare.org/cms/) if you can. Paper and digital braille, physical and digital audiobooks, etc are all freely available to blind people either as downloads or mailed for free to your home. Bookshare charges a yearly subscription, but not if you're a student.
- Eventually you might want to look at "big ticket" purchases such as commercial accessibility software, braille displays, etc. But that is often through vocational rehabilitation so will come later. Are you working or going to school right now? What is your plan with that?
- **Emotionally,** the right therapist who understands vision problems can help a great deal. I know a few people who have greatly benefited from the counseling services offered by local blindness organizations.
I've written about [losing my sight]
(https://www.reddit.com/r/Blind/comments/5627a2/feeling_disheartened/) and how a lot of the process, for me, was emotionally coming to grips with the vastness of the change instead of trying to minimize it. Does that make sense? It's a big fucking deal in the beginning, and having what you need (practically and emotionally) makes all the difference.
(And look, I know this is a lot of info, but I mean it when I say that I (and many others on this sub) want to help and want you to be able to succeed. If you want to ask more questions now, or you want to ask more questions next year, let us know.)
**TRAVEL**
- Some cane travel instruction is probably not enough, and many people who are partially sighted benefit from sleepshade (or blindfold) instruction at least some of the time. Residual vision, as you know, can be *so* misleading. The step to take now is to start using your cane 100% of the time out of the house, no excuses. (One of the reasons I recommend looking into the residential type programs is because of the emphasis on quality, comprehensive independence skills including cane travel for every situation.)
- I highly suggest getting the [NFB free cane]
(https://nfb.org/free-cane-program) or (if you have means and don't want it for free) [buying a fiberglass or carbon fiber cane from them instead.]
(https://ecommerce.nfb.org/asp/prodtype.asp?prodtype=1&ph=&keywords=&recor=&SearchFor=&PT_ID=) It is not often provided locally, it is lighter than the folding ambutech and revolution type cane you probably have, and if you don't like it stick it in your closet as a backup.
**CLEANING**
- Which cleaning tasks are you struggling with? The base of "cleaning" is going to be "keeping things neat." If you can't see things, finding them again and keeping areas clean can be an issue if you don't become consistent with where you set things down or put them away. From there, you just have to be methodical with your cleaning tasks. I vacuum the whole carpet, row by row, because I can't tell where the "dirty spots" are easily. I wipe the whole bathroom mirror on a regular basis. I wipe down the stove top after use to make sure there is no mess, and so on. For dish washing by hand, just quickly run your hand over the entire dish! Then you can feel if it is gunky in any spots.
What cleaning things aren't going quite right for you? Let me know.
**COOKING:**
How good of a cook were you to start with? What types of food are you cooking, and what sorts of issues are you encountering?
- One tool I use all the time is my silicone-coated locking tongs [like these.]
(https://www.amazon.com/StarPack-Premium-Silicone-Kitchen-12-Inch/dp/B00KDV5RZY/) (and I want to get silicone spatulas.) I use it to "feel" around my nonstick pans safely, easily flip things, etc.
- For measuring, there's [braille labeled]
(https://ecommerce.nfb.org/asp/product.asp?product=1137&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) measuring cups, or if you have color discrimination, [color coded ones.]
(https://www.amazon.com/Cooking-Measuring-Cups-Set-5/dp/B00I5PTBCA/r) There's also [bright measuring spoons]
(https://ecommerce.nfb.org/asp/product.asp?product=968&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) that you can label as well.
- A [talking food themometer]
(http://www.thermoworks.com/Talking-Thermometer) can help with tasks like "how done is this meat" and "will that turkey send my family to the hospital" lol. Very handy.
- For chopping things, I use one hand to hold the knife and have the other one OVER the non-sharp part of the knife (if you need to hold food) so there is absolutely no risk of your fingers being in the knife zone. If in doubt, go slow and carefully. I personally always leave my used knives on one side of the cutting board with the tip facing the board, and then I put all dirty knives on one specific spot on the side of my sink with the handles facing me. Some also tuck knives under the cutting board when stepping away from it.
- If you have trouble seeing liquids go into cups, a [liquid level indicator]
(https://ecommerce.nfb.org/asp/product.asp?product=1081&cat=19&ph=&keywords=&recor=&SearchFor=&PT_ID=) is good for hot cups, but just poke your finger over the rim for cold stuff.
- If you have trouble telling how done food is, FEEL, SMELL, and LISTEN to your food as it cooks often. Follow recipes until you're familiar with how long something will take. Use the thermometer if there is a safety concern. Crock pot recipes can be great because there are many easy ones to learn that have a huge window of forgiveness as far as cooking time, and a simple dial crock pot (off, low, high, warm) is very accessible.
- Microwave, dishwasher, stove and oven, etc buttons can all be labeled with [stick on bumps.]
(https://ecommerce.nfb.org/asp/product.asp?product=605&cat=111&ph=&keywords=&recor=&SearchFor=&PT_ID=) For example, I put bumps on the numbers, power, add minute, start and stop button for my microwave. I also put a button where the "light wash" for my dishwasher is and know that one click further is regular and another is heavy. (You can also use this to label a bunch of types of washing machines. Some are more accessible than others unfortunately.)
- Are you practiced with food shopping independently? Are you making plans for the week, grocery lists, etc? How do you manage knowing what is in your fridge, pantry, etc right now?
So that's a start of things I can think off the top of my head, but there's probably a bunch more. If you give me more feedback I will try to be more specific.
**Nail clipping** I haven't had an issue with. Just use the metal tip of the clipper to feel where your finger pad starts if you're not sure, pull AWAY from that area, and then clip. Then I file my nail with a filing board so they're round and even.
**Fitness**
- If you can get a gym membership you can do pretty much everything, but you will need someone to show you how to use the electric machines the first time. Always take your cane to the gym for safety. Outside of the gym, depends on what you like! A local running or hiking group would be a great start if you want some outdoor recreation. Personally I love going out for long walks, and exploring my town. The "care and feeding" book I recommended (in conjunction with quality, sufficient O&M instruction) will really help you build confidence in traveling independently with practice, and being outside and exercising is huge for your mental well being as well as physical.
- (BTW, for said exploring, there's a lot of good GPS software out there for blind people. I use Nearby Explorer Online for Android, Blindspot is very popular for iOS, just to start.)
- For **reading** tasks, [get KNFB reader.]
(http://www.knfbreader.com/) You might be able to get rehab to pay for it, although it is currently only $19.99 on android (the usual $99.99 on iOS.) It can read all sorts of printed text like mail, menus, etc. Great software for this job.
- If you aren't learning braille, get started. [I love this free book.]
(https://ecommerce.nfb.org/asp/product.asp?product=758&cat=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) It is grade 1 and grade 2 braille, NOT UEB, so you will eventually have to relearn some things (but a lot of material out there still exists in grade 2, and it is a good primer to technique, the alphabet, numbers, etc.) Some other [braille instruction books]
(https://ecommerce.nfb.org/asp/prodtype.asp?prodtype=50&ph=&keywords=&recor=&SearchFor=&PT_ID=) are in UEB. Sign up for local classes, too!
- The NFB will send you a [free slate and stylus]
(https://nfb.org/free-slate-program) to write braille with. You can use braille to label all sorts of foods (spice jars, canned goods, bottles of sauces), cleaners and soaps and such, and items at home to start with! There is [stick on labeling tape]
(https://ecommerce.nfb.org/asp/product.asp?product=1045&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) [reusable labels with elastic]
(https://ecommerce.nfb.org/asp/product.asp?product=1048&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) and [reusable magnetic tape for cans.]
(https://ecommerce.nfb.org/asp/product.asp?product=1146&cat=128&ph=&keywords=&recor=&SearchFor=&PT_ID=) So a lot of options.
- If you haven't already, sign up for the [NLS]
(https://www.loc.gov/nls/) and [Bookshare]
(https://www.bookshare.org/cms/) if you can. Paper and digital braille, physical and digital audiobooks, etc are all freely available to blind people either as downloads or mailed for free to your home. Bookshare charges a yearly subscription, but not if you're a student.
- Eventually you might want to look at "big ticket" purchases such as commercial accessibility software, braille displays, etc. But that is often through vocational rehabilitation so will come later. Are you working or going to school right now? What is your plan with that?
- **Emotionally,** the right therapist who understands vision problems can help a great deal. I know a few people who have greatly benefited from the counseling services offered by local blindness organizations.
I've written about [losing my sight]
(https://www.reddit.com/r/Blind/comments/5627a2/feeling_disheartened/) and how a lot of the process, for me, was emotionally coming to grips with the vastness of the change instead of trying to minimize it. Does that make sense? It's a big fucking deal in the beginning, and having what you need (practically and emotionally) makes all the difference.
(And look, I know this is a lot of info, but I mean it when I say that I (and many others on this sub) want to help and want you to be able to succeed. If you want to ask more questions now, or you want to ask more questions next year, let us know.)
blindambition- 2 points 6y ago
Wow- thank you for taking the time to provide this thorough response. I have RP and plan to begin using a cane shortly, so your advice on travel is especially helpful. I also couldn't agree with you more on the need to acknowledge the emotional aspects of dealing with vision loss, and the importance of seeking support.
-shacklebolt- 1 points 6y ago
You're welcome. I'm happy to try to help if you have any questions or just want to chat, as well.
Monoxboogie13 [OP] 1 points 6y ago
Wow, you really have come through like gangbusters. I am rereading this and going to try and give more feedback. I can't say it enough, thank you. I'm going to go over these resources with my stepmom and then I'll write some more. You rock like a geologist.
[deleted] 1 points 6y ago
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