# Latest claims about retinopathy of prematurity

Category: Health and Wellness

## Post 1 by psychic teacher (I can't call it a day til I enter the zone BBS) on Saturday, 19-Sep-2009 14:54:34

I was wondering if anyone on the list may have retinopathy of
prematurity? I have this condition and it only affected my eyes, but
recently, as I talk to other people from different parts of the world
who have the same condition, I hear lots of other unpredictable things
about this from them. Fortunately, it only affected my eye sight, but
I have been reading some research that was done on some people with
this condition, saying that their part of the brain responsible for
geographical coordination may be damaged. I also related this to my
mobility issues I have been having and although doctors claim nothing
else was damaged, I keep fearing that it may be otherwise because of
the latest claims.

## Post 2 by motifated (I've now got the silver prolific poster award! wahoo!) on Saturday, 19-Sep-2009 16:49:24

As someone who used to teach mobility, I think there is some truth to this. I'm not saying it happens in all cases, but I do think there seems to be some kind of corelation.
Lou

## Post 3 by sugar (Entertain me. I dare you.) on Saturday, 19-Sep-2009 17:47:08

erm, that doesn't give us much info. As far as I am aware, it's only effected my eyes, what else are you exactly talking about?

## Post 4 by Braille Reader (Generic Zoner) on Saturday, 19-Sep-2009 19:17:42

I have ROP, and I've always wondered about my issues with mobility. I don't know many people with the same condition as me, so it's hard to confirm that theory. I have trouble reversing a rout in my head and getting my turns mixed up. If I'm taught to cross street A firstand then street B, then that's what I normally stick with. If I do it the other way around, street B then A, then I get completely disoriented and the whole thing gets me confused and I feel like I have to start all over again. Same thing when I go around the block. My brain has a hard time determining when I'm back to where I've started. I wouldn't mind participating in a brain study to try and figure out whether my mobility issue is related to ROP or if it does have to do with the brain.

## Post 5 by Daenerys Targaryen (Enjoying Life) on Saturday, 19-Sep-2009 21:08:20

I have bad mobility too. I have trouble remembering which way to go, although being able to see some does help.

## Post 6 by icequeen (move over school!) on Saturday, 19-Sep-2009 22:33:58

i have a terrible sense of direction too. what are the other claims being made about ROP?

## Post 7 by Blue Velvet (I've got the platinum golden silver bronze poster award.) on Saturday, 19-Sep-2009 22:42:11

I've read this claim before. I used to have a co-worker who had ROP, and she had the worst mobility skills of any blind person I had ever met. We were moved into a new office, and she needed repeated help finding her way to our new office. And once she finally learned the route, she could not reverse the route without help. She was also one of those people who learned one route to and from a place and then would refuse to be shown a shortcut because she just couldn't handle more information about how to get to and from places. If she knew one route, that was enough for her, even if it was the long way around.

## Post 8 by Twinklestar09 (I've now got the bronze prolific poster award! now going for the silver award!) on Sunday, 20-Sep-2009 1:00:28

That sounds like one of my friends, sort of. I also have ROP, and although I learn fast, it's hard for me to transfer what I learn. For instance, I had went to CCRC in Austin, and although I learned O&M there (crossing certain streets, bus routes etc), it didn't help anything here (I don't live in Austin), and I would really not feel comfortable figuring it out myself. So I'd still need mobility training to/around places I'd be going here in my hometown. I also learned I don't do well with getting lost, and the time I did, I didn't learn anything from it at all. I couldn't get dropped off at a place I'm not familiar with and be expected to learn it. When people would give me directions, I could follow one or two, and then seemed to forget any ones after that and ended up lost again. I can learn new routes and stuff, but not too much at once, and I hate when people tell me directions and start giving too many details; that really throws me off because I can only remember a few things at a time. I also tend to get easily distracted and so don't like talking with people while using my cane, and now that I think about it, I don't think I'd do well with a guide dog for that reason either. That is also the reason I'd pick the same spots to eat at when I used to eat lunch in cafeterias at school, and now that I'm in college, I'm glad I don't have to go to the cafeteria and can just eat somewhere nearby my next class.

## Post 9 by psychic teacher (I can't call it a day til I enter the zone BBS) on Sunday, 20-Sep-2009 7:22:47

I am having some of the same issues as you when it comes to mobility, but again, I can't be sure if it is related to rop, lack of practice and opportunities or something else. I was just saying how some researchers view this. I also recently heard from another rop person that some people with rop find it harder to control impulses, such as anger, fear, or anything else they may get to feel.

## Post 10 by Austin's Angel (move over school!) on Sunday, 20-Sep-2009 8:38:59

I also have ROP. I don't have too much trouble with mobility. But I do have problems with reversing. I'm good at figuring oout how to get somewhere if I'm somewhat familiar with the area. Otherwise, my mobility isn't as bad as what most of you are experiencing.
This is interesting and I'd like to find out mor

## Post 11 by proud_mama2009 (Veteran Zoner) on Sunday, 20-Sep-2009 9:26:13

Hmm, I've never heard of this corolation between ROP and poor mobility. ROP was my primary condition and I did have problems reversing routes, but I think it was mainly because that is what I was taught up until I went to a program that used a different approach. This is a very interesting discussion

## Post 12 by sugar (Entertain me. I dare you.) on Sunday, 20-Sep-2009 10:29:08

I don't have mobility problems. I have heard about people with ROP having poor spacial awareness, and I can kind of understand that. For example, I can see a little bit, and if I am on a train platform and the light is right and I can see the edge of the platform, I can't tell how far away it is or isn't. It always looks like it is right nex to me, even if it is say six feet away. Likewise, if a door is open, I am unable to tell if is open enough for me to get through or not, which is a bit of a weird one. I had a conversation with a few of my friends about ROP a while ago. We were wondering if there is any truth in the claims that ROP is linked to low energy. I know I have extremely low energy, but then I hame ME, but I can also think of two of my friends in particular that have problems staying awake after doing normal daily tasks. Does anyone have any theories on this?

## Post 13 by Daenerys Targaryen (Enjoying Life) on Sunday, 20-Sep-2009 13:02:24

I don't have that spacial problem. I do sleep a lot though.

## Post 14 by sea star (I just keep on posting!) on Sunday, 20-Sep-2009 15:34:54

I don't have a lot of those problems either. I'm pretty good about learning how to get from one place to another. once I am familiar with a particular area, I can usually find my own shortcuts.

## Post 15 by Harmony (I've now got the silver prolific poster award! wahoo!) on Sunday, 20-Sep-2009 16:25:27

I don't have a problem with mobility as I'm pretty quick at picking up routes, but I do know someone who has ROP and has more or less no sense of direction, even if she had used the same classroom at college for like 3 years for example.

## Post 16 by icequeen (move over school!) on Sunday, 20-Sep-2009 21:07:26

About spacial relations - I guess that would be having no depth perception - but I think this is a common problem for vi persons. Sugar, that is an interesting comment on low energy. Growing up my grandmother always complained to my mother that I needed to be on vitamins or something because I was not very active and lazy. As an adult I do feel tired very early on into the start of my day - but this could be depression related too. Which brings up yet another question - is there a high insidence of depression among those with ROP - and does it have anything to do with their ability to see light. Any of us with ROP who have ever had any residual vision know that the more light there is the easier it is to see - whereas with many other eye diseases a lot of light is bad.

## Post 17 by turricane (happiness and change are choices ) on Monday, 21-Sep-2009 9:28:37

this is fascinating. my husband has rop.
Unlike part of this desscription, he is extremely coordinated. when my kids were little, he would climb up on our roof with them. he is a ham radio operator and when he was young, he would climb way up high to hang antennas.i I am terrified of hights. Pick me up a foot off the ground and I will kick and scream until you put me back.
conversely, he has trouble with mobility. he can reverse because he's been trained a a lot to do it but doesn't feel comfortable and it takes a while. additionally he does not like new places. i think it really concerns him to go to a place he hasn't been before.
The energy partof rop fascinates me. My family calls my husband captain happy, because he's thee ultimate morning person. When we were first married, as a confirmed night owl, this was the hardest adjustment I made. at oh dark 30, he is incredibly obnoxiously totally and completely cheerful. I figured I'd better change or i'd kill him. So, taking the old addage to heart of "act happy and you'll be that way" I started faking enjoyment in the beauty of the sunrise. Guess what? it ain't that bad. besides getting up with the chickens, he would love to go to bed when they do too. If I'd let him, he'd go to bed by 8:00 every night.

## Post 18 by blindndangerous (the blind and dangerous one) on Monday, 21-Sep-2009 10:51:12

I'm really thinking hard about this. I not only have ROP, but (sorry about my spelling here as I know I'm gonna butcher it) nastagnus and band cariopathy. I know that if I'm looking a certain way, I'll tend to veer in that direction, but I'm really thinking of I had trouble with reversing roots and shortcuts.

## Post 19 by Big Pawed Bear (letting his paws be his guide.) on Monday, 21-Sep-2009 14:37:38

two things here. one, rop. hmm, i have this, and though this is the case, my directional awareness is better than some sighted persons i know. give me a route, and describe it to me as a sighted person would see it, and bang, i'm there. yes i had eleven years of partial sight before my sight gave up, and that helps i suppose. re getting tired during the day., this is due to the body's need for light and darkness. it's called the cerkadian rythem, or the body clock. the human is a sighted animal, and depend on eyes for a lot more than just reading the local ragg. darkness for twenty four hours a day, or near darkness screwes with the body's clock, and this can cause blind people to ahve a crazy sleep pattern, me included.

## Post 20 by complicated_melody (Zone BBS Addict) on Monday, 21-Sep-2009 16:58:04

I have ROP and I definitely have mobility problems especially street crossings. I often find it hard to figure out which way to line up when i cross the street. my sense of spacial awareness is definitely off too. I think there is a definite coralation between ROP and orientation issues. I'm getting more adventurous now, but I still definitely have lots of issues and will usually stick to the routes I know.
I often have some strange fears that I'm wondering about. I'm scared of strange noises, like tapes breaking or records skipping and stuff like that. I know someone else with ROP who also has this fear. do you think it's somehow connected or just coincidence?
and what about the whole ROP voice thing? people say they can tell I have ROP because of the way my voice sounds. raspy and like there might be some dammage to my vocal chords.
this is a very interesting discussion.

## Post 21 by complicated_melody (Zone BBS Addict) on Monday, 21-Sep-2009 16:59:55

ooh, and the impulses thing...I have a hard time controling my impulse to get excited. if something excites me I'm not gonna be quiet about it lol. and I'm also really emotional. dunno if this is all directly related but hmmm.

## Post 22 by icequeen (move over school!) on Monday, 21-Sep-2009 17:23:32

I have also heard of premi's having issues with getting over-stimulated by things or being extra sensitive. For example, feel anxious if music is too loud for very long, or picky about the feel of clothing material.

## Post 23 by Twinklestar09 (I've now got the bronze prolific poster award! now going for the silver award!) on Monday, 21-Sep-2009 17:29:24

I don't know, but about the noise thing, some noises used to freak me out when I was little, and I'm still not comfortable with some of them. Like, when we had used to do baking activities at a little day programs for VI kids, I would run away when it was time to use the mixer, and I remember crying with the restroom hand dryers at one time. Also, in elementary school we used to have a coach that would use the whistle, and I hated it and would always try to cover my ears when I thought she would use it; she didn't even have to be that nearby for that. I also hated when the girls would scream, and sometimes noises like that still bother me. Now, I can tollerate some things if I have to, especially if I already know to expect them, but I don't like staying in such plac4es for a long time (like at a rock concert, I know it'll be loud, and I won't mind, but if it was like an all-night thing, I wouldn't like it). The noises I still don't like now are things like power tools, electric shavers, fans and heaters in restrooms, and some other stuff. I don't know either if ROP has anything to do with this, but yeah.

## Post 24 by icequeen (move over school!) on Monday, 21-Sep-2009 17:32:21

To complicated melody, I have a thing about people cracking their knuckles - or like nails on a chalk board. Both of those things oog me out and hearing them almost has a feeling or sensation along with it.
As for the raspy voice thing. A friend of mine has that too from being a premi. One of her vocal chords is actualy paralized from having had the breathing tube. She has a very raspy voice and people sometimes think she is a guy.

## Post 25 by Daenerys Targaryen (Enjoying Life) on Monday, 21-Sep-2009 19:28:29

Noises don't bother me and I don't have a raspy voice.

## Post 26 by Telemachus (Death: the destroyer of worlds.) on Tuesday, 22-Sep-2009 2:57:31

I have ROP. I have decent mobility skills. Some even comment that i have better skills than other blindies they know. However, I can't take in a ton of informationn. If, for instance, you're going to tell me to turn right on Jefferson, cross Wilson, washington, gardner, Miller, Hathaway and turn right on Hathaway, I'd much prefer you to say turn right on Jefferson, cross five streets, then turn right immediatley after crossing the fifth street. As for low energy levels/sleeping a lot, yeah. I have that too. Back to mobility... I don't have issues reversing routs, but if you show me a shortcut to somewhere, I'm inclined to just keep using the route I learned before. Example: I took a route to my disabilities office on campus that involved cutting through a building. Another blindy at my college showed me another route, that didn't involve cutting through the building. They said it was shorter, but whenever I wasn't with them, I'd always use my old route and cut through the building.

## Post 27 by complicated_melody (Zone BBS Addict) on Tuesday, 22-Sep-2009 3:49:15

people have said that about me too, that I sound like a guy. I'm not sure if my vocal chord is paralized or not from the breathing tube but I suspect it might be cuz my speaking voice is raspy and there's like no upper register of my voice at all and if there is then it doesn't last long before it just sounds like a whisper. it's odd and I've heard other people with ROP who kinda sound like me and it always fascinates me when I meet such people...I feel a sense of connection with them or something lol.

## Post 28 by icequeen (move over school!) on Tuesday, 22-Sep-2009 15:18:22

I agree with you Telemachus, it is definitely easier if they say cdross 5 streets or whatever, than to name them, the more details given the more confusing it gets, totally.
To Complicated aMelody, it may not be paralized - but any time a breathing tube is in for an extended period of time - more than a few days, the raspy thing seems likely to happen. Glad you have met others who you connect with on that level :) It's always nice to not feel alone lol.

## Post 29 by changedheart421 (I've now got the bronze prolific poster award! now going for the silver award!) on Tuesday, 22-Sep-2009 22:47:11

Hello I have great mobility and have ROP. I though at times feel that my brane might be a little weird when it comes to remembering little things. Like I can tell someone something and then forget 2 minutes later that I told them. It is strange.

## Post 30 by tear drop (No longer looking for a prince, merely a pauper with potential!!!!!) on Wednesday, 23-Sep-2009 15:07:56

I am also someone who has ROP, and until recently, I had found myself having spacial issues. However, what it took for me was an excelent orientation and mobility instructor, and the understanding that, yes, there are times when I may have absolutely no sense of direction, but I've the skills to find my way out of any sticky situation as far as mobility is concerned.
I think that as blind persons, we sometimes buy in to certain generalizations that others may make about us, and our eye conditions, even if they may be falsehoods.

## Post 31 by icequeen (move over school!) on Wednesday, 23-Sep-2009 15:57:09

hi tear drop, what kinds of different techniques did your instructor use, that helped you more with spacial relations and such? In other words how were they different than what most had used to try and teach you before?

## Post 32 by Miss Prism (the Zone BBS remains forever my home page) on Wednesday, 23-Sep-2009 18:37:01

I have some of these same issues--yes, I am a power sleeper! LOL Low energy level, trouble remembering a long list of directions, although my orientation is usually ok--trouble tolerating continuous noise and especially repetitive sounds. But I wouldn't attribute it to ROP/Rlf--it was called RLF when I was a kid, and I never quite feel comfortable saying ROP! LOL
What I have wondered about is the fact that I've always had difficulty breathing deeply, shortness of breath, like my lungs are under developed. Anyone else have this?

## Post 33 by sugar (Entertain me. I dare you.) on Friday, 02-Oct-2009 13:05:35

I think that this thread could have turned in to ROP is the reason for every other thing wrong with us a bit? Maybe that's unfair, but that's how it seems. I can't say I've every had a voice problem. I do sleep a lot, but then I have M.E. I don't know whether my problem with heights is a POR thing or a coincidence, but I could stand on a chair and feel like I'm on the top of a tower... I don't think it has anything to do with ROP that some of you dislike sounds. Everyone's got something they had the sound of. Mine is flying insects, which seems to be a common one for people who can't see, but I don't think I'd put it down to my eye condition, I just can't tollerate the noise. End of.

## Post 34 by bea (I just keep on posting!) on Sunday, 04-Oct-2009 7:43:17

I have rop and always have had mobility troubles. When I was diagnosed with high blood pressure at age 30, my mobility got worse after they put me on the pills. Rehab was working with me on mobility at work at the time and the guy noticed the worsening mobility issues. there are certain fabrics I can't even wear because of not being able to touch them for long. I will always be convinced oxygen did more damage to more parts of some of our brains than others. What is scary to me is that when I can't take care of myself any more, I won't even be able to be put in assisted living, will have to go to a nursing home because of lack of mobility skills.

## Post 35 by SunshineAndRain (I'm happily married, a mom of two and a fulltime college student.) on Friday, 04-Dec-2009 19:38:48

I too have ROP and have issues with mobility. I get lost very easily and even though I know my left and right, when somebody says to go left or right,I automatically go the oposite direction. I also havecerebral palsy due to prematurity. But the CP could also be due to damage done in utero due to my mother's drug use.

## Post 36 by kristabell (the Zone BBS remains forever my home page) on Saturday, 05-Dec-2009 19:26:57

I haverop and glaucoma and before i got pregnant I used 2 sleep all the time and would wake up exhausted. as far as the mobility goes when i was in high school, I got lost after a couple of directions.

## Post 37 by The Elemental Dragon (queen of dragons) on Sunday, 24-Jan-2010 18:41:28

i have RoP, and, don't have this problem, odd.