Blind and Visually Impaired Community
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Adjusting to the loss of peripheral vision. (Rp) (self.Blind)
submitted 8y ago by nomorechocolatebars
I was diagnosed as a child with retinitis pigmentosa and have not had any real functioning night vision for as long as I can remember however lately I have noticed a significant decrease in my peripheral vision to the point that if I am not staring right at it I can't see it. Does anyone have any advice on adjusting to this (feels like sudden but I know has been gradual) change?
matt_may 2 points
I went through a similar progression. My field felt pretty normal until early 20's then dropped off quickly. I'm in my 40's now and I've kept that core central vision of 8/9 degrees. At least so far.
nomorechocolatebars [OP] 2 points
it's interesting and a bit comforting to hear others say the same thing happened to them at about the same age. I guess I just thought I had more time (wishful thinking) but it's definitely encouraging to hear that your central vision is holding steady.
matt_may 1 points
Well I hope it does give you some comfort. I was told in 2000 I had ten years of vision left. I've beat that. But it hasn't been all fun. I've documented my visual timeline here if you're interested: http://rp-vip.blogspot.com/2015/04/visual-history.html
[deleted] 2 points
Do you mind me asking how old you are? I also have RP. I started noticing more gradual vision loss during the peak of puberty. Now 25, my peripheral vision seems worse than ever before. I strongly believe that there is a link between puberty and the gradual vision loss of RP. I haven't seen any studies between these two yet. To answer your question, you simply adapt. I know, you probably wanted to hear some magical advice but I don't have any. I personally avoid being around lots of people to avoid embarrassing myself. If you have any other questions or just want to relate with someone, please message me. I could use a friend that knows what I'm going through.
nomorechocolatebars [OP] 1 points
I am also 25. I wasn't looking for any magic tricks just helpful advice that keeps you from walking into that pole you didn't see our dealing with the angry stranger who's feet you tripped over. I have an uncle with rpm but he lives in England and really only ever tells me how much easier it is to live there rather then the states, which is not exactly helpful. I two could use someone who knows what it's like and I can actually relate to.
Unuhi 1 points
Look for a local NFB or vision rehab place.
Get some cane training - or train yourself from the internet or just try different things...
It'll be awkward.
Some days and some light situations you'll benefit from the cane - other times it's fine without it.
Learn to laugh at yourself, and find local blinky friends.
This week in my boring life:
- I spilled freshly ground coffee on kitchen floor - oops but floor smelled good after
- a few days a sharpie and my dyson were smarter than I
- I was looking for my jacket for a week... It was in living room, in a pretty central spot
- I nearly fell on the firelane painted lane (it was brown! I didn't see it) like 20 feet from my front door, while returning from a run. That paint had nearly 1/2 inch (1cm) height difference from the street
Oh, I did get some green fishing reflective tape so I could cover the terrible red part of the "selfie stick".
Oh, look at /r/colorblind too.
It's different challenges with them, but you can always use the "what color is this?" to your sdvantage. It's a bit less frightening for the others, so "oh, you're just colorblind" can be a refreshing reaction.
Get some cane training - or train yourself from the internet or just try different things...
It'll be awkward.
Some days and some light situations you'll benefit from the cane - other times it's fine without it.
Learn to laugh at yourself, and find local blinky friends.
This week in my boring life:
- I spilled freshly ground coffee on kitchen floor - oops but floor smelled good after
- a few days a sharpie and my dyson were smarter than I
- I was looking for my jacket for a week... It was in living room, in a pretty central spot
- I nearly fell on the firelane painted lane (it was brown! I didn't see it) like 20 feet from my front door, while returning from a run. That paint had nearly 1/2 inch (1cm) height difference from the street
Oh, I did get some green fishing reflective tape so I could cover the terrible red part of the "selfie stick".
Oh, look at /r/colorblind too.
It's different challenges with them, but you can always use the "what color is this?" to your sdvantage. It's a bit less frightening for the others, so "oh, you're just colorblind" can be a refreshing reaction.
WhimsicalCat 1 points
I was diagnosed when I was 14 and am now 23. At first it seemed really slow, but since I was about 19 it seems to have progressed faster, but I think as it gets worse I just notice it more. I have had a lot of trouble adjusting and have found people around me have a lot of trouble understanding it because i look 'normal' and can still do things without a cane. Became a little isolated as a result of no longer going out to bars etc. I'm going to check out support groups soon, maybe do that? I'm sure they'd have them in most countries
nomorechocolatebars [OP] 1 points
I have noticed lately as my friends have started growing up (mostly 26 and getting real jobs) is that the whole party/bar thing is starting to die out. It's much easier to make plans to go out to (a usually well lit) restaurant then being super uncomfortable at a bar because you have no clue what's going on around you.
I know I should find local support groups I have just avoided it because I guess that means it's really happening which I have pretty successfully ignored because it used to be only a nighttime thing.
I know I should find local support groups I have just avoided it because I guess that means it's really happening which I have pretty successfully ignored because it used to be only a nighttime thing.
WhimsicalCat 1 points
Are your friends supportive and understanding of it?
Yeah I had been doing the same thing until this year when I realized I just can't afford to ignore anything anymore.
Yeah I had been doing the same thing until this year when I realized I just can't afford to ignore anything anymore.
nomorechocolatebars [OP] 1 points
umm as much as they can be I guess. I am lucky to have a few very close friends that I have grown up with so they understand I can't see at night and that I don't drive anymore but if your not living it it's harder to understand just how much of your life it effects. I find it really difficult to make new friends because it's not something I like sharing right away so then your weird for not driving or tripping constantly, missing certain things... oh well.
WhimsicalCat 1 points
At least you have them hey. Yeah I know what you mean, it gets really tiring explaining it, especially with what you can and cannot see. such a complicated illness. Are you able to work or anything and be okay? I went and had a visual field test, officially qualified as legally blind now which was pretty hard to hear.
geoffisblind 1 points
Your symptoms sound almost identical to mine. I have never had night vision and my peripheral has always been bad, but I really started to notice it about 8 months ago. My solution was to talk with an orientation and mobility specialist. She recommended that I at least try a white cane and see how it worked. I was not sure at first but it has really changed the way I live my life. I don't run into things or trip as much anymore, the people I do run into are far more understanding, and I am more confident. Now I refuse to leave the house without it and I carry a spare cane in my bag. The worst it can do is not help at all, in which case you can just stop using it, if it does work it will give you more mobility, confidence and independence.
nomorechocolatebars [OP] 1 points
Interesting. Were can I find a mobility specialist? Do you mind asking how much you paid? I have been thinking of getting the cane at the very least to deflect some of the nasty looks I get when I trip over people but honestly not even sure where to get one.
geoffisblind 1 points
You didn't really indicate where you are located, but I am in the United States. The Department of Social Services for my state has a subdivision called Rehabilitative Services for the Blind. This is state funded, they provided me with a caseworker for general things and an Orientation and Mobility specialist. This is all free of charge. I meet with my O&M specialist once every few weeks and I am coming close to completing my training fully. They do more than just cane work, they can help you with night time orientation, public transit techniques, and tons more. If you don't have something like Rehabilitative Services for the Blind you can look for private organizations (I have two in my area). All of these agencies can help you with training and equipment.
My caseworker at RSB made sure I got the training I need, she also pointed me to another organization which provided me with over 5,000 dollars in low vision technology including a desktop CCTV, iPad, and handheld video magnifier. These are all things that I wouldn't have been able to afford by myself. Luckily there are resources, you just have to seek them out.
Back to the cane, I really enjoy the confidence it gives me. People make room for you and you don't get the frustration from people in public. Part of the problem is that just because you are visually impaired and prone to running into things does not necessarily mean you look like you have that problem to the public. The cane makes your disability visible which is good for a lot of reasons. The one I like the most is the not getting in hassled part, however it is also very important for safety. It is a very visible warning to drivers that you are visually impaired and may not see them and it has gotten me out of a few situations where I didn't hear a car coming due to the noise level of my surrounding. If for no other reason than that I will not leave the house without a cane in my hand.
Beyond the warning it gives, you just won't run into stuff as much and that is a fantastic perk :) If you can find an organization that will train you for free they will probably also provide you with a cane for free. If you can't find one, I don't think it would be impossible to train yourself on the basics. It isn't exactly rocket science and if you needed guidance I could PM you some basic techniques. Canes are cheap ($20-$30), I like Ambutech canes, they are very durable and offer customization for your comfort (different tips, lengths, materials, etc.) Let me know if you have any other questions :) Good luck!
My caseworker at RSB made sure I got the training I need, she also pointed me to another organization which provided me with over 5,000 dollars in low vision technology including a desktop CCTV, iPad, and handheld video magnifier. These are all things that I wouldn't have been able to afford by myself. Luckily there are resources, you just have to seek them out.
Back to the cane, I really enjoy the confidence it gives me. People make room for you and you don't get the frustration from people in public. Part of the problem is that just because you are visually impaired and prone to running into things does not necessarily mean you look like you have that problem to the public. The cane makes your disability visible which is good for a lot of reasons. The one I like the most is the not getting in hassled part, however it is also very important for safety. It is a very visible warning to drivers that you are visually impaired and may not see them and it has gotten me out of a few situations where I didn't hear a car coming due to the noise level of my surrounding. If for no other reason than that I will not leave the house without a cane in my hand.
Beyond the warning it gives, you just won't run into stuff as much and that is a fantastic perk :) If you can find an organization that will train you for free they will probably also provide you with a cane for free. If you can't find one, I don't think it would be impossible to train yourself on the basics. It isn't exactly rocket science and if you needed guidance I could PM you some basic techniques. Canes are cheap ($20-$30), I like Ambutech canes, they are very durable and offer customization for your comfort (different tips, lengths, materials, etc.) Let me know if you have any other questions :) Good luck!
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