Page 18 of 24.

<< < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 > >>

Please login to post a new message.

• Voting
• Posted: 2007-11-07 18:06:45 By Darran Z
• Hello All,
  
  I am just curious. Some of you may not have voted in an off season but just curious anyway. Did any of you vote yesterday? What are your experiences with voting? Was it electronically or paper ballot?
  
  Where I live we had electronic voting. So I used the "Large Text" option on the machine and that worked for me. However the contrast feature ****! Other than that, it worked well for me.
  
  Darran
• View Full Thread

• Hello
• Posted: 2007-11-06 15:33:37 By Linda V
• Hello I am just joining this message board. I have RP with dominant gene, thus my entire family on my fathers side are afflicted. I have two sons both whom are affected. One is21 years of age the other16 years of age. I am the mother.
• View Full Thread

• trials on cntf
• Posted: 2007-11-06 09:03:24 By leonor t
• Hello, I am Spanish and my English is not as good as iwould like but I do my best. My husbans is legally blind at his fifty (RP) I try to know every research related to this disease.I have read about people who are part of the trials with cntf that talk about their puile size and so. But my question is; Have these people experienced any improvement at their sight?
  Darran I admire your knowledge about RP. Investigation here, in Spain is rellay bad so please if you can help me with any information or research the in EEUU I will be very pleased. My e.mail is
  leotercero@telefonica.net
  
• View Full Thread

• Cycling for Ushers
• Posted: 2007-11-05 12:14:05 By Pat B
• Hi Folks,
  
  I posted this on an older thread.
  
  I'm from Ireland, I'm 29 years old, I have Ushers Type II. I have recently began to develop a passion for cycling. I have heard it all over the past 10 years with regards to sports etc. on "You'll get hurt etc."
  
  I love sports. As much as I want to go back to the sports I used to play before I had to stop them or try new sports. I know in my own heart that I can't play team sports anymore.
  
  I run, swim, do weight training and play golf, with someone who watches my ball!! :o) But there are so many other sports I would love to participate in but I just can't.
  
  Cycling is my latest effort. Some of my friends are doing it and I figured, why not? I love a challenge. I've thought about it for some time now, weighing up the pros and cons and I decided to get a lend of a bike and try it out. I absolutely love it. I want to aim for something bigger in a year or so, a duathlon or triathlon!! :o)
  
  But, what I want to know is an someone who has Ushers, how do you find cycling on roads? Apart from the peripheral vision problems, i.e. can't see another cyclist beside you. Are there any tips, tricks or advice you can give?
  
  Many thanks.
• View Full Thread

• Just an Update
• Posted: 2007-11-02 22:10:04 By Angela R
• I went a few weeks ago and saw my doctor. I passed all the tests they put me through so I don't have RP but they think I am a carrier. When the doctor looked in my eye he had never seen a carrier carry RP this way so I was referred to Dr. Brantely. Actually, he had never seen anything like what I have in my eye. They took pictures so they could use them for teaching purposes.
  
  I went today and shocked this doctor as well. They don't know what I have in my eyes. Large yellow patches, white spotting, deep dark splotching. Absolutely strange to them. My mom was with me and had her eyes checked. Our eyes are totally different from each other. My mom's father and brothers were diagnosed with RP. SO---the doctor is sending my pictures to some doctors in London to see where to go from here. He is wondering if my grandfather could have actually had Choroideremia and it was misdiagnosed. He said either way he thinks I am carrying some kind of eye disease. Any thoughts? I guess I'll have to wait and see.
  
  Thanks for Listening
  Angela R
• View Full Thread

• Eyes
• Posted: 2007-11-02 22:01:43 By Mary C
• I went to the doc. today I was told that my RP hadn't progressed which is great news. But my doctor told me that all my vision problems werent from RP. He said something about my eye being 1/3 of an inch to short which he explained would make me very farsighted, I was also told that I had a really bad lazy eye. I was wondering if anyone knew if a "short" eye could be fixed or if any doctor would even try becase of the RP? Or if anyone has ever herd of it? Any information anyone could give would be greatly appreciated. Thanks a lot
• View Full Thread

• 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
  
• View Full Thread

• 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?
• View Full Thread

• 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
• View Full Thread

• 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
• View Full Thread

• 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
  
  
• View Full Thread

• 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
• View Full Thread

• 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
• View Full Thread

• 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:)
• View Full Thread

• test message
• Posted: 2007-10-31 14:45:29 By Beth M
• Just a test message. Last two did not post
  
• View Full Thread

• 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.
• View Full Thread

• 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 ?
• View Full Thread

• 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
• View Full Thread

• 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
• View Full Thread

• 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?
• View Full Thread

• 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?
• View Full Thread

• 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?
• View Full Thread

• 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?
• View Full Thread

• 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
  
• View Full Thread

• hi
• Posted: 2007-10-25 06:47:26 By shelpy K
• when can we see hope for restoration of rp. pl advice
• View Full Thread

• 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
• View Full Thread

• 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
• View Full Thread

• 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
• View Full Thread

• 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.
• View Full Thread

• 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!!
• View Full Thread

Page 18 of 24.

<< < 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 > >>