The problems you are describing are more or less what I have. I have Leber's Congenital Amaurosis, it is for all intents and purposes Retinitis Pigmentosa from what I understand. I mostly have difficulty with reading regular print without magnification and color correction, restricted field of view, light sensitivity, night blindness, and contrast difficulties. I've had mine since birth and as of now my vision is holding steady where it is, however the future is uncertain. I know a lot of people who are just now dealing with the effects of vision loss as adults and it seems to be very startling, which makes a lot of sense.

 

My vision problems seemed to compound themselves a little over a year ago and while I had experience being visually impaired my mobility started to get to get dangerous and I found myself needing more and more magnification when reading. Before these issues I was super active and after having more challenges I have to say that it doesn't have to mess with being active.

 

Before having issues I went hiking, spent time outdoors with friends as part of our several hobbies, and went out on a fairly regular basis to do things. After last year I had to start using a white cane and actually not a whole lot has changed since then in terms of my activities. My methods have had to change significantly, but that doesn't have to be a barrier for continuing to enjoy what you enjoy.

 

I cut one of my hobbies that I wasn't enjoying as much with the vision issues and that was costing me more money than it was worth. But nothing else really changed. I've been on a few hikes in the last year. I have to take extra time with the cane but it is still enjoyable, and I'm looking forward to the ability to move faster on hikes with a guide dog. I've even picked up some activities that you wouldn't think would be accessible with a visual impairment. I had a friend get me into disc golf with him which has been really fun. I just point and pan my arm across the course until I'm pointing at the cage and he tells me to stop and gives me an approximate range, after that he helps me find my disc. I'm not great at it but it is still a good time. If you enjoy biking, maybe look into tandem biking, I know a lot of people like that option.

 

Reading also doesn't have to be inaccessible, you can look into desktop and handheld sized CCTV systems like the Enhanced Vision Davinci or the Freedom Scientific Ruby XL which both make reading much easier. If you want to learn Braille you can get Braille books, not to mention the prevalence of audio books. There are tons of options.

 

Basically I'm saying you don't have to give up on really any of the things you enjoy. You very well might have to change how you do them, that is unavoidable and you may find that you don't get enjoyment out of some things with the changes, but I can say with some certainty that you will most likely continue to enjoy the things you used to enjoy if you adapt them to your visual impairment. Having great family and friends really helps with that.

 

I think a lot of it comes down to getting your confidence. If you are struggling with Orientation and Mobility, find an instructor and get some training on a white cane. Having that boosted my confidence quite a bit. You can typically get it for free through a non-profit in your area or if you are in the US, your local Department of Social Services Rehab Services for the Blind (If you aren't in the US you will have to ask someone else what your best options are). These places can also provide you with technology like the aforementioned CCTV systems, often times for free.

 

As you get confidence you can start branching out more. I was accepted into a couple of guide schools earlier this year and have decided to go for training in June. I'm really looking forward to the speed and fluidity that having that resource will provide not only in day to day public transit commuting but also in things like getting outdoors to hike or do other activities. That may be an option that you want to consider at some point.

 

So yeah, I really hope that didn't go overkill or get too sidetracked. Thanks for posting, reading these stories is always nice.

I am a low vision mum of two, born with cataracts, developed glaucoma as a toddler. I have a seven year old boy a one year old baby girl. I have always been partially sighted but in the last two years my sight has declined to a point where I now use alot more assistive tech. I will eventually in the next few years lose the sight I have left.

I have alot of concerns about my ability to parent and what I'v found is that I worry far more then I need to about it. There are definitely things that I'm not going to be the person who teaches or does with my kids, such as teaching them to drive. More then that though, there are so many things I will still be able to do and still do now. I am the stay at home parent currently, I take my son to school, change nappys, bath them, bake, and read to youngest (my oldest reads his stories to me and his sister which is perfect for practice and good sibling bonding.) I do the food shopping and make birthday cakes, I just bought an 8ft xmas tree for us to decorate this weekend and made salt dough decorations with my oldest to hang on the tree.

In april when I first found out I was going to be completely blind I struggled with doubting myself as a good parent and my father in law told me that there are plenty of sighted parents who are assholes and the love and time I put into my kids will more then make up for any perceived shortcomings from being blind. I was also stuck on those things I will miss seeing. I think there will always be times where I feel sad about not seeing a moment - especially major miles stones, like weddings, school plays, graduation and thats okay.
The blind foundation here (I'm in New Zealand) have been amazing with coming up with ideas and ways I can use the equipment and skills I have to play and parent with my kids.

I really recommend getting in touch with your local Rehabilitation provider. Also looking at what available for recreation for adults and children who are vision impaired. Large print cards, balls that make sound (we have a soccer ball we kick around that has bells in it) boardgames, audio books, braille books, craft projects that are tactile etc. Having a cane has meant I can still go to baby groups with my youngest, I take them to school, we go to the beach, bush walks, shopping. Most things are still very possible to do with a little adaption.

A great way to capture memories is through video or just sound recording. I still take photos of my kids, but I am so thankful and love every little sound bite I have of my kids talking and laughing and singing. Especially my son when hes was learning to talk!

/u/geoffisblind put it perfectly, I couldn't have said it better myself.

It's amazing how much you adapt & adjust.

When I lost most of my sight last year (stroke during heart procedure) I thought my gaming days were over - I only have tunnel vision on my right side & I'm totally blind at night/low light.

1yr later, after changing monitor to one with a square screen, relearning how to 'look' around with the mouse since I only see the middle of the screen - I can now play shooters again. Completed FarCry 4, All the Borderlands games.

I also have mobility problems and can only walk about 20yds or so - again after relearning how to look around and scan my environment, I'm now able to get out on a mobility scooter and not stay trapped in the house.

It's only natural to be worried - I came close to a complete breakdown. In the space of one week I lost most of my sight, my cat died just short of his 26th birthday and we found out my father had a massive brain tumour that took up the entire left side of his skull. Also support for people with sudden sight loss is abysmal in the UK so I was basically dumped at home with no support or knowing how to cook/function on a day to day basis.

But I coped and now enjoy 99% of the things I used to. Made my own latex prosthetics for a Halloween outfit and have taken up making latex masks as a hobby - something I never though about even when I had full sight.

If you're struggling with your phone - I've heard good things about the Iphone and blind users. If it's out of your price range (like me), I bought a Windows phone - Nokia 635. Only cost me £60 in the UK although I think it's almost 1/2 that price if you're in the US. Cortana (voice activated assistant) works pretty well, you can dictate & listen to text messages, search the internet by voice, etc. You can also have buttons fill the width of the screen, so they are easy to see. My home screen has just 4 buttons that fill the height/width of the screen - Make call, phonebook, Text message, Cortana