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Blind and Visually Impaired Community

Full History - 2020 - 05 - 25 - ID#gqahgj
29
What should I learn before I lose my vision completely. (self.Blind)
submitted by PepperPhoenix
Afternoon all. I'm new to your community but am hoping for a little advice. I will apologise in advance as I can be a bit wordy at times.

Long story short, all of the women in my family lose our sight, it is a rare genetic condition (dominant inheritance pattern) that works similarly to macular degeneration. I'm very lucky in that my daughter did not inherit it. I am very unlucky, in that i have begun to show symptoms abnormally early, I was diagnosed at 30 and although progression is slow, I am noticing distortion in my vision and the drusen are visibly worse at each exam. My mum was not diagnosed until well into her mid 60's.

I have years yet before I will be impaired enough for it to significantly impact my life and routine, but I figured, if I can learn some things now, perhaps it will make the transition easier. I am perfectly at peace with the prognosis (right how anyway, I'm sure that will fluctuate sometimes) but I want to be practical about the whole thing.

I will retain some peripheral vision, however I have seen my mum gradually lose her sight and how much it impacts her. She was a seamstress to the wealthy and famous and her hands were never idle, always crafting something beautiful. Now that she can't do that and more she is rather lost.

So, knowing that i face the same, what skills should I learn now, while i still have my sight?

I love to read, so I'm going to guess that braille would be a good idea. I'm not fond of talking books, I just don't find it the same.

Should I practice navigating my home by touch? And performing daily tasks that way?

Should I attempt to learn some basic cooking? Cooking is one of my favourite pastimes, especially baking.

I game, but i dont know if that will be a viable one to learn to adapt to.

I enjoy various kinds of crafting, primarily crochet but also resin craft, and sewing.

Should I learn to use adaptive technology now?or am o just over thinking the whole thing? I thought adapting as things got worse might work, but realistically that's what my mum did and it hasn't really worked.

Thank you in advance for any advice you can give me.
Rw0004 17 points 3y ago
My 7 year old son is blind (has some light sensitivity and can make out some shapes) and has been since around 2 and a half due to an adverse reaction to chemotherapy, so although I don’t have first hand experience, I have learnt a lot by thinking about what he needs to know and learn.

The most obvious was braille. As a ‘sighted’ person I read it by looking at it. I obviously had to learn to help him with his school work. So it might be a good idea in your case to learn it now by sight to make that transition easier in the long term as you will know the basics visually. Was actually surprisingly easy to learn with egg box and ping pong balls to get an understanding.

Maybe naturally start doing the things that you will want to do later such as knowing when you’ve filled a glass by having finger tip on the inner rim of it. We try to use all of these techniques so that it feels completely normal to him.

We’ve noticed as he is getting older, a lack of independence is more frustrating to him than a lack of site, so have made sure he has as many things as possible to be self sufficient. I’ve essentially gone down the ‘smart home’ route. We have Philips hue bulbs in every room of the house, Amazon echos in every room, nest thermostat, ring doorbell and security cameras, and recently Amazon Fire Cube boxes in every TV. This means that whatever he wants can be achieved by voice. The cubes fully control the tv/sound bar etc so he is able to turn it all on and ask for the movie/tv show he wants. If he’s cold, he can put the heating on in specific rooms. If he needs a light on etc. Can even find out who’s at the door via the intercom (we don’t let him do that one yet unless we know who’s coming)

The next bit I need to learn so that I can teach him is navigating a MacBook via the assistive functionality and touch typing as he is going to need those soon. He is going through ‘normal’ school so this will be essential.

You sound like you’re in a good position figuring things out early. I wish you all the luck in the world 🙂
PepperPhoenix [OP] 5 points 3y ago
Thank you, thanks very helpful. You've touched on a few things I hadn't thought of.

My husband will be able to help with some things but he has a different genetic condition which means he uses a wheelchair a lot, and he will continue to get worse.

The smart home is a great idea, one or two of the things won't be suitable for us as we rent, but I can make most of those adaptations and start to use them regularly, that will make the transition from using by choice to necessity much more natural and easy.

I shall ca the RNIB and arrange delivery of a braille learning pack.

Good idea on starting to use certain behaviours, for example feeling inside a glass, now to make them natural.

I'll haul out my laptop and hunt out some touch typing lessons too.

Part of the problem I think is that as a sighted person, you don't really spot the places where a small adaption (finger in the glass) can be used. I'll have to start thinking about the things I do and how they can be managed without reliable sight.

Also, I'm glad to hear that your son is doing so well, even if he finds it frustrating. And as he is 7 now and the chemo was much earlier, I assume he is doing well on that front too, and I am pleased for you both. X
Rw0004 3 points 3y ago
I am forever recommending the smart home thing to everyone (sighted or not) as it is highly convenient, even if slightly lazy. Think the only aspect you’d struggle on in rented accommodation is the heating (although if you ask your landlord if you can install it and leave it behind when you move they probably wouldn’t mind. And a lot of the energy companies have deals from time to time where they will provide it for free if you sign up to a 2 year contract. SSE for example are doing the nest currently. You do pay a slightly higher tariff, but is worthwhile.

The ring setup isn’t any major modification as they can be used via the inbuilt battery if you don’t want to run power to them all. Just need to charge them every few months.

As for the Alexas and Fire Cubes, these are just the height of convenience for anyone as the kids are constantly losing the controllers so you can completely sidestep this issue.

Another word of advice actually - If you dint already, switch to iOS. The Apple ecosystem is second to none when it comes to accessibility features. Should mean that there is no major difference between operating an iPhone, iPad or MacBook. Apple also insist on apps looking and working the same across the entire App Store, meaning that if you learn one, you essentially learn them all. Apple actually have really extensive teaching programs as well where they will actually train you on a lot of it (probably not while this pandemic is ongoing, but in general)

There’s probably a million and one things that we do now naturally that I’ve probably forgotten as it’s all just second nature now but I’d say just take a moment to think before you do anything and put yourself in your future selfs shoes to become more aware. Things we didn’t even think about before have helped drastically. Even small things, like putting things on the stairs to take up later. Might be fine now, but you don’t want to forget that later. We learnt the hard way from a couple of slips. Getting used to having the doors all the way open or closed so that he didn’t fall face on in to the side of one. Keeping sharp knives in a separate draw to the normal cutlery so that he didn’t just put his hands straight in and cut himself.

RNIB have been very helpful through everything and have so many teaching aids so that’s definitely a good one to go for.

Netflix is also fantastic. We found that we struggled to find a lot of audio described content without going and spending fortunes on blu rays, but Netflix has tonnes. Especially with newer content. 9 times out of 10 they have it with AD.

There is also a good website called audiovault.net which allows you to download just the audio file of a film or tv show. If someone we are watching doesn’t have AD, I will usually download the audio from this website, switch my sound bar to Bluetooth while muting tv sound and just play it alongside the video (to also cater for us watching it). Very quick and easy, and they’ve made the website fully accessible by removing all of the clutter. You’ll want this as your other half will probably still want to watch while you listen.

I know you said you don’t like narrated books, but Audible is fantastic. Again, both kids (my little girl is sighted) access these on their amazon echos in their bedroom at night time. I also like to listen at night to relax me. They have a mix of standard narrated books and others with sound effects and multiple readers for a more interactive ‘movie like’ experience.

And yes, he is good, thank you for asking. The side effect that caused the blindness also cut of the blood supply to the rumours and completely killed them. So the thing that made him blind, saved his life. Can’t ask for more than that 🙌🏼
bjayernaeiy 3 points 3y ago
As a blind person, I agree with everything said here. Being born blind, I haven't had the luxury of living in a smart home, but that's something I'm very much definitely incorporating now, and finding it very helpful in my life.

As to the Apple bit, I don't necessarily agree. Android is catching up, and argueably has caught on in terms of accessibility, and this is not just coming from the perspective of someone who happens to use Android :P

Similarly, Windows. There are always screen readers such as NVDA to make your day more helpful, and something for OP, pretty much all audiogames available for the blind operate on Windows. Check out $1

There are also some games available on Steam which are totally accessible for blind people to play.

Kutose on your son for having a parent such as yourself!
Rw0004 1 points 3y ago
Oh wow, I did not know about the accessible games on Steam. Thank you very much for the heads up. I shall definitely check it out. Not sure how much content there will be for a 7 year old, but one for the future maybe.

The main problem I find is that unless you stumble across good information like this on the internet you quite often miss it.

Anything we can do to make our kids’ lives that little bit more enjoyable right :-)

I’m glad you’re well.
saharacanuck 2 points 3y ago
This is a little thing and might be a bit random, but the RNiB has this little gadget that you can put in a glass (it has a few pointy ends in that go into the cup) and will beep at different levels. Might be useful if you have a really hot cup of tea.
KillerLag 2 points 3y ago
The device is called a liquid level indicator. A few different places make them, but RNIB definitely makes one of the better ones.
PepperPhoenix [OP] 1 points 3y ago
My great grandmother had one of those I think.

Back when she lost her vision the condition wasn't really known (it still isn't tbh, it's so rare there isn't actually any prevalence information) so they just called it "choroiditis"
saharacanuck 1 points 3y ago
Is that what your condition is still called?
[deleted] 1 points 3y ago
[deleted]
taversham 5 points 3y ago
I would definitely start learning Braille right away. You can learn it by sight at first, which shouldn't take too long - it's no worse than learning the Russian alphabet or Morse Code or something similar, so with even 15-20 minutes per day you will probably feel pretty comfortable with it (at least the basic forms) within a few weeks. There's an app called Braille Tutor for Android which is very helpful.

The much harder aspect is learning to read it by touch. You will need to train your finger tips to be sensitive enough, which can take a lot of time and commitment if you want to reach a level where you can read books. I would start practising as soon as you can with that (medicine boxes are a good place to begin before you've got your hands on proper resources, legally they all have to have Braille on)
AllHarlowsEve 5 points 3y ago
I went blind at 18 very rapidly, and I'm only 25 so it's been a few years for me.

I really recommend learning at least one device's built in screen reader and braille. Those two open up millions of doors that would otherwise be annoying to pry open.

I taught myself to use my iPhone over a fairly short amount of time, and I learned braille in a program for the blind. If I had known simple things like the fact I could change typing from double tap to just single tap, I would have had a much better time. Plus, having access to the internet means you can do your own research when you have a new issue, rather than asking a rehab specialist who may only have one technique they know of.

I use braille for labelling everything, and I typically type in braille on my iPhone. My other disabilities make a college degree a money sink for my state, so I haven't gone and thus I don't have a braille display, but I would still love one that works reliably whenever I have the means to get one. But, I'm so speedy with a screen reader that realistically I'd use it mostly for proofreading.
Eriona89 4 points 3y ago
I would also recommend to learn recognise clothes by touch. Or you can choose to mark every item.
Winnmark 2 points 3y ago
How to shoot and how to drive.

Trust me, you'll wanna be a pro by the time you go blind.
PepperPhoenix [OP] 2 points 3y ago
Already have a full (manual) drivers licence and my cadet RAF marksmanship award. ;)
Winnmark 2 points 3y ago
I love you.

Nuf said.
PepperPhoenix [OP] 2 points 3y ago
Lol! I've done some interesting things already in life. One thing I won't have is regrets about missing out on things I should have done. For which I am very grateful, and I realise just how lucky I am.
CloudyBeep 2 points 3y ago
If you want to learn household tasks like cooking nonvisually, receive training from blindness service providers; don't try to invent your own techniques when wearing a blindfold.
Envrin 2 points 3y ago
​

The two top things I can think of is learning to use a computer via screen reader. I suddenly went blind myself, so had to teach myself how to use a computer again while blind. Was frustrating, and would recommend practicing while you can still see.

​

Same goes for an iPhone. Start using one via coice over and with Siri voice commands to get the hang of it.

​

Having said that, please remember it is 2020, and technology is advancing at an unbelievably rapid pace, so there's always the chance that whatever you teach yourself now will be totally useless in 5 - 10 years if and when you go blind, as we'll be running on all totally different technology by then. For example, by then there may be brain implants that connect directly with our visual cortex, allowing us to see just fine.
macadamia_owl 1 points 3y ago
My eyesight gotten worse gradually last years now I'm legally blind on right eye at best (visus 0,02=1/50 or less) left eye no light non functional since 15 years due to ROP and retinal detachment. But I successfully completed "normal" school and even studied some time English full-time. But I had to move to other country and stopped it.

I attended for 1,5 years rehabilitation program for people who sight goes worse in a school for blind and low vision. It is financed in Germany to prevent people staying in home due to disability, to learn skills to later get back to work or school. I learned there some useful stuff. If you have access to such kind of rehabilitation it's worth doing. That was for small group age ranged 16-55 years but we got along really well!

I have some tips for you.

If you want to learn and use Braille: start now.
Do not learn Braille by sight! It's common mistake and it's very hard to switch over to proper feeling with your fingers. If you want to learn and then use it effectively learn and read with fingers only it's very important!
First steps actually is to highten your fingers sensitivity, play with Lego, small beads with closed eyes, touch different textures surfaces objects. Train on your clothes first take out random ones and try to recognize them, feel the materials the difference between different jeans, shirts. Touch everything in safe setting. Then start with very large dots can be ping pong balls or pebbels, Legos. Proper hands position is important, sit straight, both hands on the beginning of the line your fingers in one line most important for now are your point fingers other fingers should stay in contact with paper even if they can't read yet. Use your dominant hand for reading, one finger first often point finger ist most sensitive with a practice you could later read simultaneously at the same time with other fingers or even maybe with both hands but it's rare for people who lost sight later in their life. First so with a 1 letter, then alphabet, short words, longer ones. Take your time don't rush don't rub Braille points to feel better. If fingers go numb do a break.

Start now professional mobility training and using white cane to familiarize with it. Use it daily in every condition.

Start learning typing blind on your laptop/computer keyboard I think it's called $1 it's essential when you can't use mouse anymore. Learn essential keyboard shortcuts to operate computer without mouse. Later if you lose your sight you will need Braille monitor that will show you text from screen in Braille dots for this expensive Screenreader is necessary. Mouse doesn't work well or at all with Screenreader like JAWS/NVDA (only free one)/Supernova/ZoomText Fusion.

You don't have to buy Apple products it's a old myth! Nowadays Windows and Android are as much accessible as iOS and you can save your money for other essential technology aids. I can use myself my 200$ Android phone everyday as well as iPhone (yes I had it before) blindfolded with no problems. I have WearOS - Android accessible 100$ talking smartwatch! There's tons of hardware to choose from not only Samsung or iPhones!

Learn how to safe cut protecting your fingers: always lay item flat, use contrast cutting boards for now. $1 train that with eyes closed slow at first speed comes later!

The last color I stopped seeing with left eye until it was only light and black was yellow and sometimes orange. Useful for important markings use stickers in those bright neon colors.

Gaming - most accessible from consoles is Xbox. It has Screenreader (it doesn't work in games sadly), has a magnification feature (works everywhere), haptic feedback is awesome so much different vibrations types for what is happening on the screen not only intensity but they're bare so subtile cues if you can try it somewhere! Xbox vibrations feedback works with Windows 10 too and some games I think those with Xbox Anywhere certificate. There's also Colors Schemes, High Contrast, Voice Commands but I think when it's set only to English?

PM me if you have additional questions or if I missed anything or if you're just curious.
wonder_wolfie 1 points 3y ago
My aunt has gone blind slowly and she wanted to get used to it as good as she could, so she did an hour daily/weekly of blindfolded doing random stuff around the house as it helped her predict which things she’ll have problems with in the future :)
[deleted] 1 points 3y ago
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bjayernaeiy 1 points 3y ago
I've never been in your particular spot, but you might want to invest your time in screen readers. NVDA (Non-Visual Desktop Access) for Windows, and the default Voiceover and Talkback for iPhone and Android respectively.

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