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• Neurotech trial comments
• Posted: 2007-11-02 20:09:15 By Julie A
• Hi Everyone,
  I'm one of the lucky(I hope)patients in the early-stage Neurotech trial and am wondering if there are any of you out there who may be having some of the same symptoms I'm having.
  My surgery date was 6/7/07, so I'm almost exactly 5 months into this trial. In one month, I'll go for a 6-month exam which will include the first visual field testing since before I received the ECT.
  I have two observations to report. Since early in the trial I've had a sensation in one eye that can't be described as pain, but just sort of a nagging, weird feeling. Now I notice that the pupil in that eye is smaller. I don't know how long it's been like that, though about a month ago, someone I was just chatting with noticed it and remarked on it out of the blue.
  Anyone out there have any input on this?
  Thanks a bunch,
  Julie
  
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• Braille
• Posted: 2007-11-02 12:26:09 By Andrea B
• I still have 20/20 vision (corrected) but was wondering if it would be dumb to learn Braille while I am sighted? Is the chance great enough that in the future I may need it? Would it be easier to learn it now then later?
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• I was 26 and now 46
• Posted: 2007-11-02 09:39:13 By Jeannie M
• Hi my name is Jeannie I was told I had a domiate gene cause my bro. also had RP. I already had 2 girls and wanted one more child I had a son in 1991 was told either my kids woild have RP or not at all. That was 20yrs ago things have changed so much should i worry now about my kids. No doc. nobody ever told me about this web-site found about it yesterday from a freind. One thing i have learned on my owe through out the years for me as a women that hormoral changes makes RP progress faster everytime i was Pregant and i started full mentalpause at 40 for the last 6yrs I've been going down hill faster and faster with my eye-sight I have to give up a lot of things that I enjoyed soooo much. Major DEPRESSION. family Dosn't not understand they are mostly grown and didn't see it happen so fast. Cause i was the one that was always there for them. I thank GOD that I was blessed enough sight to be there for them through out the years, but now I scared to be alone. MY husband is going out of town more then half the year. The hardest part of my marrige is he had always been in deinal. Never once had been to a Doc. appointment wirh me. I KNow my story is long, but it was nice to vent to people that might be going through the same thing. GOD BLESS, LATERS JEANNIE1
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• medications
• Posted: 2007-11-01 23:34:00 By Sally G
• Does anyone know where I can find a list of drugs that would not be good to take while having RP. I understand some drugs can possibly speed up the loss of sight. Thanks
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• Powerpoint and Excell
• Posted: 2007-11-01 18:34:46 By Ira S
• Thank you Andrew for sharing this group link with me, before this I have been going it pretty much alone.
  
  I am in a position where I need to either retire or find a new job within my company. My condition has reached a point to where though I have some useful eyesight I need to preserve my eye sight as much as possible for the most vital daily needs.
  
  I have been asked by my employer to seek training in power point and excel in order to make myself more marketable. I have been using JAWS for a few months yet even producing a quality work document, Lotus Notes and semi accusable web sites challenges me.
  
  Is a job that requires frequent use of presentation software and fairly complex spreadsheets a reasonable pursuit for a new JAWS user? If so would normal training courses be of value or should I pursue training that is accessibility oriented?
  
  Thank you
  
  
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• Work
• Posted: 2007-11-01 12:38:24 By Sandy H
• I currently work at blind center that does production work for the goverenment. I work on a die cut press machine. I love my job but get laid off work. I don't live near a bus route. I feel stuck. My spouse now takes me to work on becuse it is on the way. Any ideas on what else to do. NO PAPER WORK
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• Computer Screen
• Posted: 2007-11-01 08:49:05 By Andrea B
• Hi,
  
  I have noticed that when I look at a completely white computer screen (when waiting for a page to come up) or just a lot of white in the background, that it seems to hurt my eyes some. Does anyone else have this problem? Is there anything we can do to fix it?
  Andi
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• To Darren and Andrew B
• Posted: 2007-10-31 14:48:45 By Beth M
• Just a quick update for you. I have been in touch with client assistance in my state and they have advised me on action to take. I have also contacted the EEOC who says that I have a case. I am following their direction in the matter discussed in my previous post.
  I will keep you up to date on what happens.
  I just wanted to thank you guys for the advise. This is for everyone of us who have been treated unfairly at work due to our disablity, not our ability. And to think that this is a company who hires ONLY disabled people to work for them.
  Thanks again.
  Beth:)
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• test message
• Posted: 2007-10-31 14:45:29 By Beth M
• Just a test message. Last two did not post
  
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• legally blind w/ cataracts and migraines
• Posted: 2007-10-30 22:42:43 By Jeanine L
• RP since age 4, only 33 now and recently told was legally blind and had cataracts. Now I suffer from severe migraines and neck tension, migraines so bad eyes hurt and nauseous to boot. Does anyone have any advice on cataracts and migraines????? My mother's side of the family (all female) suffer from RP as well.
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• Migraine's
• Posted: 2007-10-29 07:29:44 By HAMZA A
• HI EVERYBODY IT'S BEEN A LONG TIME SINCE I WROTE A MESSAGE ON THIS SITE 6 MONTHS I THINK ANYWAY I WAS WONDERING IF ANYBODY SUFFERS FROM MIGRAINE'S IVE JUST BEEN TOLD I SUFFER FROM A CLASSIC MIGRAINE WHICH YOUR VISON GOES DISTORTED AND THEN A REALLY BIG HEADACHE AND MOTION SICKNESS NOW I HAVE RP AND CLASSIC MIGRAINE TO DEAL WITH **** I LOVE MY LIFE. RP IS GETTING REALLY BAD TOO IS THERE ANY NEW RESEARCH OUT ?
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• Advice
• Posted: 2007-10-28 14:38:22 By Mary C
• Hey everyone, I am Mary and I am 20 years old. I have RP and have for all my life. I am married to a US Army Soldier stationed in Kore, I also have a 21 month old son. I don't drive, so that pretty much means that I am home all by myself with the baby every day. And I live in such a small town out in the boonies NC. Although I do love and miss my husband, I can't help but to feel some anger towards him, I feel like he left us here, Knowing I couln't really make it on my own. When he calls we are getting into fusses all the time, usally because I am bored or have had nothing to do all day, He just thinks I am trying to complain all the time, But he don't know what it's like! This is def putting a strain on our marriage, and I fear it will end us. Any advice as to what I could do to try and help myself, or if anyone has any advice as to what I could tell my husband so he can better understand. Thanks
  
  Mary
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• Adult onset late 40s
• Posted: 2007-10-27 22:09:59 By Elizabeth J
• I just was diagnosed with RP at age 51 but know I have had it for at least 3 or 4 years.. please tell me your experiences and the progression that took place for those who were diagnosed late in life? thank you, Liz
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• Dealing with RP
• Posted: 2007-10-27 16:49:25 By Anita F
• I was told I had RP last year at the age of 46. I always had 20/20 vision up until last year. I stated experiencing tripping over thing and having trouble driving at night. Went to get glasses thinking I was getting older. The eye Doctor told me to go see a eye doctor specializing in RP. Went to Berkley University to get tested. The original Doctor I went to gave me the news, I sat in his office for 2 hours before see him, then he tells me I have RP nothing can be done for this except take vitamin A. I have my own business selling custom drapery and a Interior Designer,this news was upsetting to me thinking how many years do I have before I need to give up my business, because I will not be able to drive or see colors. Last week I started to get depressed over the thought of lost my eye sight. I have no idea how I got this doctor question me about my family, I'm second generation, family came from Italy I have no records to find out what side of my family had this. How do you find out? By genetic testing?
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• HI
• Posted: 2007-10-26 19:29:54 By Ericka L
• I just found out from my doctor that I have 5 degrees and that my peripheral is bad. Does anyone know is 5 degrees bad or not? He said that my vision is good, but my peripheral is really, really bad. He basically said I have vision like looking through a shotgun. I cannot believe this is happening to me. Will I have to give up my independence of driving a car?
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• HI
• Posted: 2007-10-26 19:29:41 By Ericka L
• I just found out from my doctor that I have 5 degrees and that my peripheral is bad. Does anyone know is 5 degrees bad or not? He said that my vision is good, but my peripheral is really, really bad. He basically said I have vision like looking through a shotgun. I cannot believe this is happening to me. Will I have to give up my independence of driving a car?
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• hightened senses... including vision
• Posted: 2007-10-25 21:36:03 By Elizabeth D
• OK I know this is probably not an appropriate thing to write about but I'd like to share this experience anyway.
  Has anyone ever experimented with recreational drugs which have impacted your vision? I had such an experience at Bonnaroo this summer.
  I took ecstasy with a few friends and went to go see a band named Ween. It was day/dusk (around 7-8pm so the sun wasn't bright and it wasn't dark so I could see decently well). When it started to kick in, I had a heightened sense of everything - including vision. Colors seemed so vibrant! I also found myself walking around effortlessly amidst a field of people sitting on the ground on blankets and stuff, which was also littered with debris, trash, and whatnot. Such things would have been obstacles as I would have found myself constantly scanning and stressing about not walking into anything, but I could step effortlessly and gracefully between such former obstacles.
  It was amazing! it made me feel like the RP wasn't even a problem, even when it started to become dark out - I didn't have trouble keeping up with my friends who were all adorned in brightly lit glow necklaces. I totally felt at peace with myself.
  
  Does anyone else smoke marijuana? I've heard it's good for eyes (glaucoma, obviously). But I read an article online about a woman with RP whose nightvision it improved. I've had a few experiences where that was the case, but usually my eyes get really dry when I'm stoned.
  
  has anyone else had any similar experiences with illicit substances?
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• CONFUSED!!!!
• Posted: 2007-10-25 06:55:44 By shelpy K
• one question i wanna ask u guys is weather or not we can go ahead for children. i don't want any one to suffer what i am going thru. dr in chennai said that i can go ahead. there is only 3% to 5% chances of it flaring up in my child. we has a long genetic counseling done and were suggested that we can have a baby. but we are not convinced somehow.. can anyone tell me weather we should go for a child or nor. in my family there is no reported case of RP for last 4 generations. we have a a family of around 40 families. but no one is having RP other than me. even my siblings have a excellent vision. my sis (younger) does not even wear any glasses yet.
  so any honest suggestion will be more than help full.
  thank you all so much
  shelpy
  
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• hi
• Posted: 2007-10-25 06:47:26 By shelpy K
• when can we see hope for restoration of rp. pl advice
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• Just An Update
• Posted: 2007-10-24 22:57:51 By Angela R
• I went to my doctor on the 16th and all test turned out to be in the clear of RP. He said with the history in the family I am most likely an X-link carrier. What confused him the most was when he looked into my eyes it wasn't the "typical" look of a carrier. I have white spots in the back of my eye. My doctor is 65 years old and has never seen this before so he is sending me Dr. Brantely who also specializes in RP. They will most likely do the genetic testing to see if this is what my family has. The doctors office took pictures and I was told these not be charged but used for future teaching purposes.
  Thanks for all your support.
  
  Angela
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• I need advise on what to do
• Posted: 2007-10-24 13:34:11 By Beth M
• Hello everyone.
  I've got a problem and hoping that someone here can help me to decide where to go to next. I am clueless on how to handle this situation.
  I work for a company that hires disabled people to work from home. I take inbound calls from home for the IRS. All of our calls are monitored by the IRS and critiqued. If we make a mistake with a call we are written up at work for that particular incident and it goes in our permenant file as a defect. I just got back from vacation to find out that I had been written up from the last week of work.
  Ok, here is my problem. We have three messaging systems running during our shift. Two of which have beeping when we are sent an istant message and both override other applications. One does neither.
  During my shift, I was sent a message to log out early because of low call volume. I did not see the message because it had been covered up by my ordering system. At the end of the call when I submitted my order, because I did not see the message, my order was deleted from the system; in turn causing the defect.
  So, I spoke to my superior about the issue because it happened twice in one week and have requested that they please send me messages through one of the two programs that beep so that this will not happen again. (If I get wrote up again I face termination) I am now on a 30 day probationary period and have lost my promotion for this as well.
  The request that I made to be messaged through another program has been denied because as I was told "you are the only one with this problem".
  SO, what do I do? Do I just keep going on or do I continue to fight to have this corrected and if so who do I turn to? I don't understand the problem. It's a fairly reasonable request considering that they only sent me messages this way the last week I worked and twice this happened. Am I being unreasonable? They are aware of my visual disability and I can't figure out why it would be so hard for them to accomodate this particular problem for me.
  Please help me guys figure out what to do. I go back to work today and I'm dreading it because I feel like I have been wronged with no recourse in sight.
  Thanks for listening.
  Beth
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• Article from CNN about Stem Cells and Cornea Replacement
• Posted: 2007-10-24 09:53:42 By Kenneth D
• I know this doesn't help all of us with RP, however, I am uplifted reading this b/c this shows that stem cell treatments can work.
  
  http://money.cnn.com/2007/10/18/news/international/stem_cells.fortune/index.htm?postversion=2007102406
  
  Let's just hope that more researches take note and start making progress on repairing our retinas before it's too late.
  
  Ken
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• FLASH FOCUS
• Posted: 2007-10-23 23:12:22 By Oscar N
• Hello how is everyone...? Anyone pick up a copy of "Flash Focus" for the DS? It's interesting, but probably no use for us though.
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• Carol C
• Posted: 2007-10-23 23:03:26 By Nikki s
• Thank you for posting about your brother on the board instead of going to the secret participant society where everyone seems to be.. i am starting a new thread cuz i think the post on your brother is buried a page back or so.... Well that is just fantastic that his vision seems to be improving!! best of luck to him and keep us posted on his next visit coming up if you can!!
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• Retinitis Pigmentosa Maybe?
• Posted: 2007-10-23 21:45:07 By Steve S
• Any help would be appreciated. I was diagnosed with Rod-Cone Dystrophy mainly from an ERG test, but there was a slight wave to it. My specialist said i think you have Rod-Cone but dont come back to me in 20 years and tell me i diagnosed you wrong instead of RP. This made me wonder if he has a clue what hes talking about. I know i have very slight pigmentation in both eyes. Any suggestsion? thank you Steve.
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• A Thank You To All
• Posted: 2007-10-19 01:01:42 By Cynthia M
• I just wanted to say Thank You to all of you. I started coming here when my 15 yr old was diagnosed last year, then my 7 yr old and finally my 13 yr old daughter. This board has been great for information and meeting friends.
  
  The Thank You though also includes all the information I have read here that helps those with other visual problems. My brother has diabetic retinopathy and recently diagnosed with Wet AMD. They have started shots of Lucentis. He, due to his vision and other diabetic health related problems has now had to leave work at the age of 56 and can no longer drive. Reading how many of you have handled these steps has helped me to guide him through this.
  
  So Thank You!!
  
  Cynthia
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• Great party!!
• Posted: 2007-10-18 19:40:04 By Mary K
• I am so glad I didn't miss this party! Thankyou to everyone for their responses to my no more driving posting. I guess i was looking for moral support and I feel like I have met some new friends too! Thankyou everyone!
  Mary
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• Finally seeing the light
• Posted: 2007-10-18 00:54:39 By Pamela S
• Hi everyone,
  
  I was given the news several years ago that I have Retinitis Pigmentosa. It was as if time stood still, but I moved forward and thought I could do this on my own. Now, after making so many mistakes at work, I finally have to tell my Human Resources dept and boss I have this disease. Since I am so private, it is one of the hardest things I have ever had to do and I ask for your prayers in that I will not have to leave my job that I love so much.
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• Finally seeing the light
• Posted: 2007-10-18 00:54:34 By Pamela S
• Hi everyone,
  
  I was given the news several years ago that I have Retinitis Pigmentosa. It was as if time stood still, but I moved forward and thought I could do this on my own. Now, after making so many mistakes at work, I finally have to tell my Human Resources dept and boss I have this disease. Since I am so private, it is one of the hardest things I have ever had to do and I ask for your prayers in that I will not have to leave my job that I love so much.
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• Hadley School for the Blind
• Posted: 2007-10-17 16:36:31 By Darran Z
• Hello All!
  
  I wanted to make a note regarding Hadley. I just was there last week for their annual board and award winner presentation (yes, I was nominated and won an award). This school is truly a wonder! Hadley started out because the founder, William Hadley, who was a HS teacher became blind at 55 due to an accident. He was frustrated at the fact there wasn't any services for him to provide lessons in Braille. By the time of his death in 1942, there were 800 students. Today, Hadley has over 10,000 students world-wide! There are 34 instructors who are behind this along with a mavelous group of Board Members, Trustees and the Skokie Country Club in Glencoe, Illinois. This place is amazing.
  
  All the courses are FREE to those who are visually impaired. If you are a family member of someone who is visually impaired you can take the classes free as well. They also offer professional classes. One of the award winners that I met was from Canada and works for CNIB.
  
  If you feel like you are not ready to learn Braille, then take some of the other classes they have for enjoyment. They have Independant Living, English, Math, Business Law, The Human Eye (if you think you know the eye, then you might think twice and take this class). They are offering a Guide Dog course that will be offered starting in January 2008 for those interested in obtaining guide dogs. They add classes every day. Oh, for those who want to learn about Assistive Technology, they have that class too.
  
  This is truly a remarkable place. I would encourage anyone to check them out. Their website is www.hadley.edu.
  
  Darran
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