I have RP too.

*What kind of hobbies do you enjoy and how do you do them?*

Dancing! My wife and I dance at the eighties club every Saturday. We are always the first ones on the floor and we dance holding hands to keep me from bumping into people. We go hard for about 45 minutes, stop for a water break, then go hard again for another half hour. It's our weekly cardio. I'm dripping in sweat by the time we're done.

*I like watching YouTube videos on my Xbox app but that is becoming harder and harder. I also like browsing reddit and the internet on my phone. If any of you enjoy these things, how do you do them?*

Movie screens don't work for me, even if I'm sitting in the back row. I've lost too much field of vision. I watched the new Matrix movie on a laptop sitting about 5 feet away from the screen. It's not a perfect solution but it's the best I can do right now. In a few more months I'll probably have to give it up entirely.

For music I use YouTube on Mozilla Firefox. I have extensions installed that keep the music playing without pausing to see if I'm still watching and two ad blockers installed so I never hear advertisements between songs. I've tried Pandora and Spotify - they each have good things and bad things about them, but I keep coming back to YouTube. Just remember to go incognito before looking up a YouTube video on how to change the spark plugs on a '97 Chevy Silverado or you'll get oil change vids in your music algorithm.

To browse online I use a dark background with white text in an otherwise dark room, with magnification up around 200% or 225%.

*Similar question for music and audio books. Do you use your phone? If so, do you use standard apps like Spotify or apple music?*

All my music comes from my laptop of the radio in my wife's car. I don't use my phone for music.

*How do you go about cooking and getting groceries? What types of things do you typically eat or make?*

I shop with my wife. My left hand is on the shopping cart and my cane is in my right. I accompany her in case she forgets how beautiful she is and nobody is there to tell her. She does most of the cooking so she does most of the menu planning. I come along just to flirt with her.

I can still see enough to cook. I do a lot of steamed vegetables and grilled meat on rice. For the spice bottles I can't read I use rubber bands. The bottle with garlic salt has one rubber band wrapped around it, the bottle with taco seasoning has two rubber bands, etc. I use rubber bands to tell the shampoo from the conditioner, too.

*How often do you get out and how do you do it?*

Every morning I take the dogs out for a short jog. Really short. Like 100 yards, barely enough to get my heart rate up. But it's good to loosen up the stiffness in my joints. My wife and I go for a 3 or 4 mile walk about twice a month, shopping every Friday, and dancing every Saturday.

About once a month we do something on my blind bucket list, like waterski, miniature golf, go to a Def Leppard concert, or fly kites. I've flown on more airplanes this year than I have in the previous 20 years combined. Still, I wish I got out more. It's hard waiting for someone else to drive me where I want to go. It's hard being patient. But I realize how lucky I am to have a wife who drives me.

I use a white cane as a conflict de-escalator. It doesn't help me navigate much, but when I run into your kid and you turn around to get up in my face you see the white cane and everything's forgiven. If I'm out somewhere with a white cane then chances are really high I'm with whoever drove me there so I'm rarely left alone in strange places. And when I am, like at the airport, the staff has always been really helpful.

Being blind can be a challenge, but there are ways to overcome. What works for me might not work for you, and what works for you might not work for me. Everybody has to find a solution that works for them. If anything I've shared helps you, great. But if not, that's okay, too. You do you. Blaze your own path, find your own answers, make your own life hacks.

Hi u/fortwangfandangler there are already some great suggestions in the comments here. and I will add a few tips of mine. But firstly, it is great to see your post. There are quite a few of us who have been in similar situations and found ways that work for us. And most of us are happy to share what has and hasn't worked for us. I do have RP as well. However, I really didn't have much sight to begin with even since I was a child. I grew up in India and for the first 28 years of my life, I relied on my family. I never learnt any mobility skills or tried to be independent. Then I moved to the UK for job and I now live in the US. I was married twice, once to a sighted girl and then a blind girl but now live alone. Once I moved out of India and lost the support system, I had to learn to be independent at least in my daily tasks. Before getting to your specific questions, I suggest you make a list of things that are getting to be a problem for you because of your vision loss. That would help you prioritize and identify solutions.

For instance, you mentioned that you don't use a cane because you have help. I find that being able to just go out on a Sunday morning and have a coffee somewhere or just walk in the park by my own is liberating. So you may want to look at getting orientation & mobility training. If you are not keen on a cane, you could perhaps think of applying for a guide dog. A guide dog can help you make new friends too! It can be liberating. You still need to learn to use the cane before you get a guide dog but that will be a process that the guide dog school can help you with. I use a cane simply because I am not ready for the responsibility for a dog. Now for your questions:

1. Hobbies: I read a lot (aka listen to audio books for the most part). I am trying to play the piano but that is slow progress. I am also a big train nerd and so I am building a model railroad layout in my garage. There are things that I need sighted help with for the layout but there are a lot of things I can learn to do independently as well. I love cycling but I am yet to find a pilot for tandem biking in the area I live. I am a big news junkie and follow sport. In my case, it is Cricket as I grew up in India and lived in the UK for a while.
2. 2. Talkback/Select Speak can help as other folks have already mentioned. I prefer the iPhone as it is a lot more reliable for accessibility but it is a choice. You may also want to contact your local Lighthouse or NFB and they can recommend some training for you. I am writing this comment using a Windows computer and a screen reading application called NVDA. I watch Youtube on my phone all the time. I don't have enough sight to see the video but I listen to the audio and for most of what I am interested in, this is sufficient.
3. 3. For audio books, I use Audible and NLS which is a free service with over 100K audio books from library of congress. For music, I use Spotify and Youtube Music. The easiest way to play music in my opinion is to get a smart speaker that you can talk to. Either the Google Nest Mini or Echo Dot. You can just ask them to play any artist or album or song. You may also consider a smart display which may work better if you are interesting watching .
1. 4. I use online grocery delivery services like Instacart and Shipt. These may not be an option for you depending on where you live. I am not much of a cook but I can warm up food in the microwave or the oven. I also have an Instapot which makes it easier. It uses pressure cooking as opposed to a hot plate or an open flame. I also rely on salad kits. Best frozen food I find is from Trader Jo's and unfortunately they don't deliver.
4. 5. For navigation, I use a combination of strategies. Where I live, Uber is an option. I take it sometimes when I have to get somewhere under a time crunch. I also have a bus that stops near my home and so the Orientation and Mobility instructor taught me how to use the bus to get to downtown, etc. I also sometimes use Google Maps walking directions to get to places. There is an app on the iPhone called BlindSquare which is great. As you are walking with your cane, it gives you information on where you are, the upcoming intersections and places around you. I went to a downtown nearby yesterday in the bus, I got off and used Google Maps and BlindSquare to find Sweetgreen to have some salad for lunch. Some blind people use what is called paratransit which is a subsidised service in your local area. They come pick you up and drop you off where you need to go but they tend to be less reliable and you have to book in advance.
5. Hope that is useful but happy to answer any more questions you may have.

Get yourself an Android phone. With it you can read almost any text, audiobooks, make calls, send a text. I recommend Android over Apple because Android is easier on your wallet. Apple will also put great constraints on what apps you can use, and Apple breaks their accessible tech more often than not. I would also suggest that you get in touch with NFB because they can help you with resources you might need.

EDIT: If you live in Canada you can sign up for my Android class I'm holding beginning in February. Or you can see some of the programs CNIB put on for blind tech.

https://cnib.ca/en/programs-and-services/tech/technology-programs?region=ns

Download android accessibility suite from the play store. Once installed go to accessibility in settings and try select to speak. It allows you to have the phone read a selected portion of the screen rather than the entire screen.


If you say which country you're in, people will be able to tell you which service you can contact which will be able to assist you directly. For example in the UK we have the rnib which would be able to answer all your questions, give you magnifiers, white cane, mobility training, therapy, career advise etc etc

I have RP as well. I say first, keep a sense of humor because it's all you got during hard times. I would say that the modern smart phone is the best invention ever designed, I'd just like something with some more buttons than a typical glass sandwich. You can absolutely cook as a totally blind person. It's all about temp control, listening to the sizzle, and being careful. I have two kids and make elaborate meals all the time. I take the bus to the grocery store, and stumble over to the customer service desk where they always find a worker that would rather be helping me than doing some boring task anyway. They help me shop, pay, and load the cart up. Then I use my smart phone to call an uber where I grab all my bags and head home. I'm almost all the way blind and go on my roof for inspections, hang shelves, hook up electronics, and so much more. I suck at mowing grass, but found that mowing bare footed is extremely helpful. I know right, who mows grass bare footed right? I think lots of us do, and it is all part of adapting. There is an app for reading mail, text on screens, and food labels called google lookout on android. Hands down best app I've ever used for this, and it's free on android phones. Plus android phones vibrate nicely when your finger is on something that can be interacted with the screen reader. There is also Aria, which gives you 5 minutes free each day if you need a human to tell you what is around using your cell phone camera. Video games has always been my hobby, and some time I cry in my beer over that. However, there have surfaced many games that are accessible to the blind on both PC and console which helps a little bit. PC is almost completely accessible for spotify or any other app like youtube, news, etc.. You got this, and it is super easy to be honest. There are many of us who have RP that are bouncing back. I have a friend that lost his vision much later than I, and this guy got depressed and collected disability for a year and a half while acting helpless and begging everyone to help him. One day I was on my way to college and this guy is riding a tandem bike on the way to his new job position at the university I work at in order to go to the first day at his new job position where he now makes 175 thousand bucks annually. Being blind just spices shit up a bit, and there are tons of things that you don't want to see this day and age anyway.

I highly encourage you to get in touch with your local/national blind services. Some of them have really helpful webinars, support groups, stores, etc. For example, the $1 and $1.

I would recommend learning braille and checking out websites such as maxi aids, the low vision store, and ls&s for useful independent living aids.

Go to a rehab center for the blind. check out LCB or CCB on Google.

Before answering your questions, let me start by stating that I'm a geek with a narrow yet deep interest in technology. In addition, and even though I've been totally blind for 7 years, I'm only now adapting to living with this condition, so my advice is far from being the best.

> What kind of hobbies do you enjoy and how do you do them?

I code using the screen-reader on my Mac. There's a huge mental drag associated with coding blind, but apparently I can still get things done this way. I'm even considering looking for a job at some point next year once I'm happy enough with my portfolio of projects developed without any sight. I learned most of what I know with sight though.

> I like watching YouTube videos on my Xbox app but that is becoming harder and harder. I also like browsing reddit and the internet on my phone. If any of you enjoy these things, how do you do them? Is there a phone or app that allows you to read texts and navigate a phone somehow? I'm just trying to think if it is still possible. Xbox has audio navigation but it doesn't work for apps. I don't know how you would find new videos or how you would know the video title or artist. This is my biggest fear. As I have had to give up all of the things I used to do and stay inside most of the time, youtube, reddit, and Netflix are about the only things I enjoy.

Never been much of a media consumer apart from video-games, even when I had sight, so my opinion regarding this subject is worthless. Anyway some platforms offer audio description, but I like to feel immersed in the action, and audio description prevents that in my opinion. For reddit I just use a regular desktop web browser with the old layout, which isn't very easy to learn but is accessible enough.

Every major mobile and desktop operating system comes with a screen-reader these days, and in the case of Windows, there are even multiple third-party options that you can choose from. On touch-screen devices, navigation is primarily done using touch gestures and taps; on the desktop, navigation is primarily done using the keyboard. Activating the screen-reader on an iPhone is just as simple as triple-clicking the home or side button during the setup process, which makes iOS add VoiceOver to the accessibility shortcuts accessed exactly the same way during normal use of the phone; activating the screen-reader on MacOS is just a matter of pressing Command + F5, or Command + 3x TouchID on MacBook Pros with a TouchBar.

> Similar question for music and audio books. Do you use your phone? If so, do you use standard apps like Spotify or apple music?

I listen to music primarily on my Mac and HomePod, and pay for an Apple One subscription which includes Apple Music so I use that. There's nothing preventing me from listening to music on my phone, it's just that I rarely use the phone for anything other than phone calls, texts, and development, because I find it much more comfortable to use my computer instead, which is where I spend most of the day anyway.

> How do you go about cooking and getting groceries? It can be tough when you can't really see the label. Even now I stick to the simplest things because it is so difficult to measure things, cut ingredients, read instructions etc. What types of things do you typically eat or make?

My mother and sister do all the grocery shopping, and I eat a lot of pre-cooked food. Anyway if I actually needed to do the shopping myself I'd just ask for a staff member to escort me in the super market. On Sundays I also order food deliveries through Uber Eats. Regarding reading labels there are some apps that can do that for you. The one I use is called Seeing AI and is made by Microsoft.

> How often do you get out and how do you do it? Right now I still rely on the small amount of vision I have to try to feed me information. The cane seems like it will be a good supplemental tool but I don't feel like it would really help me get around. I might not run directly into anything but it wouldn't help me know where I need to go if that makes sense. So how do you go places?

I seldom go out, and have people around who can help me when I have appointments. However whenever I need to go out by myself I rely primarily on my cane, sense of orientation, and good visual memory to navigate familiar places, and GPS apps such as Google Maps, Apple Maps, and Blind Square if I happen to get lost. In the US and UK, Microsoft released a free app called Soundscape which is probably worth checking out before investing in Blind Square.

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