You need a cane, but you also need orientation and mobility training. Find out who does that in your area. Having the cane without the training is only marginally useful. The people who train you will be able to advise you on what cane to get, how long, what type, etc.

H. I have Usher Syndrome, which includes RP. I’m 44. I started using a cane three years ago and I got my first guide dog two years ago.

I have a roller ball cane. It’s brilliant, I had mobility training with my cane with was actually provided by the guide dogs association in the UK.

I do g a cane is very empowering. You’ll start to feel more confident, your brain will appreciate the break from scanning all the time. Excuse the pun but you won’t look back.

My other advice is forget what the degrees are on the test result. You can see what you can see. The brain is mind blowing my awesome. It pieces together the information it received and does a great job of working with what it is given.

Focus on what you can see. Don’t be too hard on yourself.
It’s all going to be ok.

And yes, while it’s currently true that there’s nothing that can be done for RP, that statement isn’t going to stay that way. Things are changing.

Welcome.

As modulus said, you don't just need a cane. You need orientation and mobility training. If you're in the US, this is typically arranged through your state's agency that provides rehabilitation to blind people. What it is depends on your state, department of rehabilitation, commission for the blind, etc. Orientation and mobility isn't just learning how to to move the cane, but the skills of safe cane travel for all the types of travel you might do.

Cane tips, lengths, and types are part preference and part what your needs are. The NFB sells folding and non-folding canes for people who like a lighter metal tip cane. Ambutech is a major supplier of a variety of cane types and numerous different tips, including rolling balls and metal tips. Your O&M instructor can help you figure out where to start personally. Many of us own multiple canes and tips now for multiple types of situations.

Some people go to comprehensive training programs for blind people which are live-in programs that teach you a variety of blindness skills (cooking and housekeeping, cane travel, computers, job skills, braille, etc.) If you're especially motivated to learn a variety of blindness skills as quickly and comprehensively as possible, and can take several months off work or other obligations, this is potentially a good option to consider. I've heard good things about the nfb-affiliated training centers (colorado center for the blind, blind inc, and the louisiana center for the blind,) but haven't personally attended them.

Some get these services locally or in home. Your state might send out trainers, or contract with an organization that serves blind people where you can go in-person for classes. It's quite location specific. Signing on with the state is usually the first step to access a variety of things (training, education, technology funding.)

Your local NFB chapter, ACB affiliate, or another local blindness group might be good for putting you in touch with local resources.

Learning braille is useful, but it definitely isn't a priority to start working on if you don't have hearing loss IMO. You might be able to get training locally. The NFB independence market also sells some books for adult braille learners. You can also do a distance braille course through https://hadley.edu/braillecourses.asp

I would personally say the two biggest things initially are getting orientation and mobility training, and getting training (which you can start doing independently) on using your computer and smartphone with a screen reader. Without knowing what you use, there's too many to list. https://www.nvaccess.org/ for windows
and https://applevis.com for mac and ios devices are top of the list.

Also, I personally recommend looking into finding therapy through a local blindness organization, or with a therapist who understands disability issues, if you haven't already. While it is totally possible to live a full and happy life when you're blind, it's also completely normal and expected that there's going to be issues with losing sight. Having someone to work these things out with and taking care of your mental health is huge for a lot of people.

We have a fantastic community here, and if you have any questions or issues that come up, there's probably someone here who can help you sort it out or point you in the right direction. If there's any way I can help, let me know as well.

I'm not here to say anything smart, as all the amazing posters before me have already provided resources and advice a-plenty.

Just wanted to give you a high 5, from one RP-er to another. I went from 25 degrees down to 5 over the last 15 years (27 y/o now), also have pretty bad cataracts.

Just wanted to assure you that grieving over lost vision is normal; in a way it's almost worse to have it slowly but surely taken away from you. But I'm sure that the more education and training you get on mobility, technical aids, etc. the more you'll start getting your confidence and sense of self back.

Learning to rely on the cane, changing your screen settings, asking people for help, etc. can be a slow process and it sometimes carries a sense of shame - "are others going to look at/treat me differently?", but at the end of the day I always say "I can't see if other people are giving me pity stares anyway, so what's the point of worrying about it?" :D

Btw if you haven't already, join the Retinitis Pigmentosa FB group, lots of great people there. Awesome place to vent.

As far as canes go, I got mine free from my state services (folding, pencil tip), but really want a metal glide! Unfortunately, I am having trouble finding where to order one online that doesn't have a minimum order requirement (like Ambutech, which sells a great variety of cane types). A cane should be about as tall as your sternum, though personal taste varies.

You're going to be okay.

Got a few recommendations...

1.) You’re totally right about Braille. Learning it with your eyes isn’t going to do you much good, you need tactile resources. I’d suggesting checking out Hadley Institute for the Blind. They run correspondence courses that I believe are cheap or free for people with vision impairments.

2.) You should make contact with a state agency ASAP. Many states have a Division of Blind services or something similar. Try to make an appointment with them and get in the system. It could open up a lot of doors to training programs and assistive technology.

3.) You should definitely get a cane, but you’ll also need orientation and mobility training to use it as safely and effectively as possible. Where I live (Florida) O&M training can be obtained through the state, local blind associations or advocacy groups like the NFB. This might be bias, but I’d strongly suggest starting with a pencil-tip cane.

4.) Braille is well and good, but we live in a high tech world. It would be good to get acquainted with a screen-reader like ZoomText or JAWS for your computer and Text-to-Speech for your phone. It’s an intimidating prospect at first, but very doable with a bit of training and lots of practice. Once again, the state, blind associations and advocacy groups are your friend.

5.) You have a really good attitude and I respect that, but a bit of honesty here. Almost everyone who loses their sight struggles with it emotionally. You probably already know it better than I do, since I was born with my disability. Just realize that the helplesness, anger and sadness you may feel are completely valid and try not to beat yourself up over it. Joining a blindness advocacy group like the ACB or NFB could help. A lot of people there have gone through the same things and can commiserate or offer advice.

Best of luck!

Where are you located?

First and foremost, you should hook up with your local agency for the blind. In my state it's BESBI, I think that's CT and NY, and a lot of other states have Comissions for the Blind.

From there, you should be able to recieve a starter cane, and later different canes depending on what works best for you and what you like, and orientation and mobility training to help make it safer for you to travel independently as you learn to use your cane safely and properly.

I'm personally a fan of the NFB canes for little stuff where I just want to avoid hitting my shins off of stuff, but I don't like it for navigating. I prefer a 4 piece aluminum, or graphite, cane with a marshmallow tip. I kind of hate the roller ball, assuming you mean the tennis ball sized one, because IMO it turns the cane from looking like a tool to looking like a child's toy.

My phone battery is getting low and my boyfriend has my charger, but I'll include a few more things, and hopefully my phone won't die before I post, lol.

The blind mice megamall, an online site, is really great for picking up a lot of blind-based products. I'd hold off on the big ticket items, like the very useful $200+ pen friend, until you know that your state will not purchase it for you. Seriously though, the pen friend is great for both labeling and taking notes.

I'd also check out Maxi Aids and the things the Carroll center sells. If you have the means, and your state won't pay to send you, I highly recommend the Carroll Center. I learned *so* much in the three months I spent there.

If you have an iPhone, mac, or other apple devices, I recommend checking out applevis.com. They have a lot of guides and great forums.

There's also app reviews, which is really helpful.

If you want any more specific info, just reply and I'll try to respond quickly.

Agree with the other respondent that you should get some professional orientation and mobility training. You are doing this for your own independence and safety. NFB might not be the best as they, as you have already encountered, are quite dogmatic in their recommendations and opinions. Better for you to get training while you still have some daytime vision even if the training is done under blindfold.

Braille training is probably less important than technology training for phone and computers. Are you using any access technology such as screen magnification or a screen reader?

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