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• MCS Treatment
• Posted: 2007-09-15 12:03:47 By Julie S
• Has anyone heard of or been seen by Dr. Flora for treatment of RP with MCS? ~julie
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• RP
• Posted: 2007-09-14 14:57:00 By Carol D
• To Nancy;
  My doctor before I moved to Mimai and now North Carolina was Dr Eliot Berson, Mass General. I found a good retina doctor in Carolina named Peter Van Houten. He has been confering with Dr. Berson. I made another appointment with Dr. Berson and drove to Boston. He made a remarkable difference. In case anyone doesn't realize it, Dr. Berson is one of the top expert in this field in the world. If you can make an appointment with him. Some insurances cover it. Don't mess with the off the wall retina doctors out there. People from all over the world go to him. (617)573-3621.
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• RP "Driving Glasses"
• Posted: 2007-09-13 18:07:17 By Darran Z
• Some States permit Bioptic lenses which are nothing more than a optic lens. In other words, instead of looking through binoculors when searching for something like magnification, you use the opposite end where the visual field "widens." This is only good if you have excellent VA.
  
  The drawback is, there are much more higher rates of accident with these lenses than with non-biopitc. While they are a good idea at the surface, beneath it all, it is a bad idea.
  
  Darran
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• update
• Posted: 2007-09-13 10:06:40 By Danette D
• Hi All,
  
  I thought I would share my experience at Dr. Stone’s office. As some of you know my family was always diagnosed with Dominant RP. Once my son was diagnosed with RP, a disease everyone said I did not have and could not pass to my kids, I was on the search for answers. I now have both Dr. Fishman and Dr. Stone saying they think our family has X-linked RP. We are participating in the NIH eyeGENE study and Dr. Stone's lab is now also searching for the gene.
  
  I really liked Dr. Stone! He is a believer, he is a very positive individual, and can you believe he is an excellent family counselor. I think my search for a doctor has come to an end. I plan on sticking with Dr. Stone, I really like him.
  
  My husband went to the FFB seminar that was is Naperville IL, I did not know they made special glasses for people with RP that enable them to drive. If anyone has a chance to attend these types of seminars grab it, there is a ton of good news on RP.
  
  We are thinking about entering the DHA study that Dr. Birch and Dr. Hoffman are doing, is anyone else considering that one??
  
  Danette
  
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• re hi to marisa p
• Posted: 2007-09-13 04:34:49 By Sarah E
• hi marissa its sarah, Thank you for replying . i hope i can chat more with yoiu in the future. i will look into that cntf process. I hope i 'am spelling that right. I will talk to you later. Sarah.
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• Need Help
• Posted: 2007-09-12 09:44:29 By Andrea B
• Hey everyone. I could use some help findind a specialist in my area. I live in a small rural area in southeaster IL and my retina specialist doesn't know much about RP. He has suggested that I look for a specialist with more experience and look into gene testing. I'd also like to know if anyone has info about how to get into gene testing and any research studies I could be a part of. Thanks for your help!
  Andi
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• Just Got the ECT-CNTF Implant Treatment and Doing Fine
• Posted: 2007-09-11 19:34:27 By Rick H
• I am part of the RP CNTF implant clinical trial in Michigan. I just had the surgery on 9/7 and today, 9/11, is really the first day I can see well enough to do my emails. The last few days my eyes were quite sore,itchy, and red. So far, things are going as expected. I can't really tell which eye had the sham surgery or which one has the implant. Although, one eye is a little more sore. Now, I will go every month for my vision exam and....hopefully one eye will show some improvement.
  
  
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• message to marissa p
• Posted: 2007-09-11 04:13:23 By Sarah E
• hi marissa , it is good talking to you. i'am just trying to find other people with rp to chat with. When were you diagnosed with rp? Have you seen any development of cures for it? Talk to you later. Sarah.
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• CNTF
• Posted: 2007-09-10 15:52:28 By Patti H
• Does anyone know if any of the centers in Chicago, participated in the CNTF clinical trials. If they did what doctors are invovled. Thanks
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• Transportation Columbus Ohio
• Posted: 2007-09-10 12:15:17 By Joel L
• I am having a real hard time due to transportation issues. It has not been a problem in the past to the extent it is causing me so much stress. I am trying to get a promotion at work and trying to buy a new home in a new location. I use Cota project mainstream which says it is a service but seems to hurt more than help. I have had RP since birth and have adapted to most situations well. I drove up till I was twenty four then gave up driving for the safety of my self and others. In the last six years I have lived on my own and graduated from Capital with a degree in teaching. Cota has made me feel helpless though due to me not driving and not having much family support I rely on my girlfriend which at times can put a strain on a relationship. We just got engaged and got approved for a house well now Cota will only come during certain times in the morning and evenings based off their scheduled times well it is making it very difficult to live and have a productive normal life. I have contacted ADA and am seeking an attorney. There are no other transportation services in central Ohio that I know of if anyone could help if they know of any would be appreciated. Cota seems to not care if you are late or if you stand outside in the heat for over an hour or if you are just stranded. I just dont know what to do anymore.
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• newbie
• Posted: 2007-09-10 12:10:30 By James K
• Hi Everyone!
  Great messages of support. Yeah, I've got RP w/ushers. Bummer, but I've been able to keep a positive attitude about it thus far. I'm 54 and was diagnosed in my early 20's. The doc said I'd be blind by the time I'm 50. Well, not quite. I can still see but the walls are closing in more and more these days. I've been partially deaf since birth and first started noticing night blindness in my late teens. Thank God that, despite my hearing loss, I was able to pursue a career in music, playing nightclubs and even landing a record contract back in the early 80's. The downside is that I had to give up the nightclubbing and most other night time activities including playing with my band. I still play for fun and for my church. It's great therapy.
  I live in S.E. Idaho (Gods Country)but there are no chapters around for hundreds of miles.
  To all who read this, keep the Faith, stay upbeat and keep the pressure on the politicians to keep the research grants flowing. Cheerio for now, James
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• Transportation help Columbus Ohio
• Posted: 2007-09-10 12:05:04 By Joel L
• I am a 30 year old male that has RP for my entire life and have seem to conquer all means to achieve most of my goals. But now I am running into a roadblock I am trying to work and live a normal life I use COTA project mainstream and they are preventing me from living a normal life in a house I want and preventing me from being able to work productively to live a normal life. If anyone knows of any help I would appreciate it I am going through very desperate times where it is stressing me to the point of hating my life.
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• Message for KRISTINE
• Posted: 2007-09-09 16:06:06 By Barbara C
• Kristine, There are message appearing on the RP home page (right hand lower corner) and these aren't appearing on this current message board... Can you contact these people and tell them the correct way to get on THIS RP message board? Thank you. (I tried to reply to one person, but I think I have it jumbled up...)...Thanks
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• RP Runners
• Posted: 2007-09-09 14:36:43 By Dave A
• My daughter has signed up the both of us for a road race in October at Disney World call the Twilight Zone Tower of Terror 13K (8.1 miles). I have not been in a road race in about ten years (about the same time I stopped driving), but I still run about three times a week for six miles at a time. The reason I stopped racing was because of the crowd (I have less than ten degrees visual field).
  My question is how I handle this, my daughter said that she will help guide me but I do not know how this will work. By the way this race starts nine o¡¦clock at night. She has suggested that we run with a tether (rope) between us. I guess that we will need to practice with this from now until then.
  I would appreciate any suggestions except for do not do it ļ.
  
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• Does anyone really chat/email??? lol
• Posted: 2007-09-09 11:23:26 By Nick A
• Does anyone really chat or email other people with RP on here? I always see people posting messages looking for someone to talk to: however, no one really says anything lol. Even a few people I've contacted to chat are still posting new messages on here looking to talk to people with RP. I just don't understand. I'm just really frustrated right now in my life with having RP and I could really use someone to talk to who has RP. (Looking for good conversation too....not just a one word or a tiny sentence reply). Thanks so much
  Nick
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• bear bile
• Posted: 2007-09-09 10:04:59 By Amy A
• I just wanted to see if anyone has reseached or heard of any other reseach about bear bile. Check out this clip it was on the local news in Atlanta.
  www.wsbtv.com/health/index.html
  Let me know what you think.
  Amy
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• new to rp
• Posted: 2007-09-09 05:16:09 By brigid s
• i have just found out my 20 year old son has got rp, he knows there is somthing bad wrong with his sight but just not the name or how it can affect him. we are going on tuesday to the hospital to the ophthalmology clinic for the first time. i do not know what to expect and am trying to put on a brave face in frount of my son and the rest of my family but it is realy getting me down. I at this time do not know how my son will cope with the news about his eyes and i am realy afraid i will not be strong enough for him. what can i do to make it eaiser for him
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• CNTF participants
• Posted: 2007-09-08 00:09:08 By Nikki s
• Anyone updates? How is the vision doing???
  
  thx!
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• CME question
• Posted: 2007-09-07 23:32:32 By Nikki s
• Has anyone had or know someone who has had drastic visual improvements after having a steroid injection in eyes (or close to eye>not sure how it works)???
  
  Thanx!
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• Like to talk
• Posted: 2007-09-06 16:34:16 By Andrea B
• Hi, My name is Andi and I am 32 years old. I am from Robinson, IL and I just found out in May that I have RP. I do not know anyone else that has it. I am going for my 3 month check up tomorrow. I would like to speak to anyone about any/every stage of RP they may be in. I would like to know more about my future and what to expect. My email address is andibrush@yahoo.com. Thank you so much!
  Andi
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• I've started a new project
• Posted: 2007-09-06 13:56:41 By Cynthia M
• Hello Everyone
  I've been around reading, posting when I can. But will tell you, everyone here keeps me so inspired for my kids and their future.
  Since a year ago when my 15 year old was diagnosed with RP (followed by my 7 year old son and then my 13 year old daughter), I have been quite busy. I started a local support group for parents of visually impaired children, do presentations to bring awareness to how people can best associate with a blind/visually impaired person and about RP.
  My newest project is a blog. While this shares some of our personal life, it also will deal a lot with RP in the family.
  http://mygreat8.blogspot.com
  Check it out and hopefully we can brighten your day!
  
  Cynthia
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• September 11th
• Posted: 2007-09-06 13:04:06 By CHRIS B
• FLYING THE FLAG 9-11-07
  
  Please join us in this FLY THE FLAG campaign and
  PLEASE copy and paste this E-mail int a new E-mail immediately and send it to everyone in your address book asking
  them to do the same.
  
  We have a little less than one week and counting to
  get the word out all across this great land and into every community in the United States of America. If you send this E-mail to least 11 people and each of those
  people do the same...you get the idea.
  
  THE PROGRAM IS THIS:
  
  On Tuesday, September 11th, 2007, an American flag
  should be displayed outside every home, apartment, office, and store in the United States. Every individual should make it their duty to display an American flag on this
  anniversary of our country's worst tragedy. We do
  this in honor of those who lost their lives on 9/11, their families, friends and loved ones who continue to endure the pain, and those who today are fighting at home and
  abroad to preserve our cherished freedoms.
  
  In the days, weeks and months following 9/11, our
  country was bathed in American flags as citizens mourned the incredible losses and stood shoulder-to-shoulder against terrorism. Sadly, those flags have all but
  disappeared. Our patriotism pulled us through some
  tough times and it shouldn't take another attack to galvanize us in solidarity. Our American flag is the fabric of our country and together we can prevail over terrorism of all kinds.
  
  Action Plan: So, here's what we need you to do...
  
  (1) Copy and paste this E-mail into a new E-mail and send it to everyone you know (at least 11 people). Please don't
  be the one to break this chain. Take a moment to
  think back to how you felt on 9/11 and let those sentiments guide you.
  
  (2) Fly an American flag of any size on 9/11.
  Honestly, Americans should fly the flag year-round, but if you don't, then at least make it a priority on this day.
  
  God Bless You and GOD BLESS AMERICA!
  
  Thank you for your participation.
  
  
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• Would like RP/US pals
• Posted: 2007-09-05 22:41:57 By Jeri B
• Hello, my name is Jeri and I'm almost 39 and I live in eastern Oregon. I was diagnosed with RP at 11 and Usher's Syndrome (hearing loss) at 3. I was declared legally blind in 2004 and I wear hearing aids. My sister also has this condition (hers is much worse) and she's a year older than me. We have a younger brother a year younger than me and he doesn't have any of it and we have not been able to trace these diseases in the family anywhere. I have 5 boys (ages 16 down to 5 months) and none of them seem to have it. My sister has a son who is 14 and he doesn't have it either. We were also told at an early age we would be totally deaf and totally blind before we reached 25. We both have attended regular public schools to high school graduation. My sister just got into the clinical trial set for her eye implantation for September 19th (Portland area) and I live too far away to try and participate in the studies. Would like to have a network of friends who understand the situation we live in our daily lives.
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• my six year old and rp
• Posted: 2007-09-05 18:34:21 By paul m
• hello my name is paul iam 39years old and have the pleasure to have three wonderful children.however my first born joseph has been under a specialist for a year and a half,and the result of it all is he has rp.he gets on with wearing glasses for school and gets involved with every thing a six year old does.my other two daughters are clear and where this faulty gene came from we do not know,my wife can not deal with it at all and I have found my self over the last 12 months being the sole member of our partnership sitting in on the tests our son has had.I do my crying on the inside and tend to be posative most of the time.this is begining to get harder by the day or night as here I am tonight leaving this message,any advice would be very much appreciated as we have a unsure future ahead.thanks paul...... ps you will have to exsuse any spelling mistakes as Iam a plasterer from liverpool england who has never left a message on any forum before!!!!!!!!!!!!!!
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• Retinal Photography
• Posted: 2007-09-05 17:17:59 By Mike S
• Does anyone have photos taken of their Retina?
  
  I've been seeing a local optomotrist for the last few years for my prescription glasses. He recommended that I find an optomotrist who can take photos of my retina on a yearly basis. It seems like a good alternative to the field vision tests.
  
  I wasn't sure if anyone else does this. He was surprised that I had never seen my own retina.
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• Good conversation wanted
• Posted: 2007-09-05 00:32:03 By Nick A
• Hi. My name's Nick, i'm 31-years old from Canton, OH. I'm new to this site; however, I'm not new to RP. I'd like to have some nice conversations with anyone on here who has RP. My email is tiburon0676@yahoo.com. Feel free to Instant Message me too if you want to chat. My screen name on Yahoo is Tiburon0676. Thanks.
  Nick
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• What else?
• Posted: 2007-09-04 23:10:04 By Rose P
• I realize that rp is what brings us together, it's our common bond so to speak. It has affected our lives, whether it be directly or indirectly. Personally, I have lived with RP all my life. It's something I am forced to deal with, but it doesn't define me. I'd like to get to know all of you, but not just about your RP. For example: I am a 21year old college student; an aspiring writer; a lover of literature, as well as horror/suspense novels; I'm into the old no doubt stuff, green day, but Tim Mcgraw's pretty cool; I love the WWE, and ugly betty. those are a few things about me, and I'm looking foreword to hearing stuff about all of you. You can e-mail me at rp1rules@gmail.com hope to hear from you soon!
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• Just wanting to vent
• Posted: 2007-09-04 10:01:01 By Beth M
• I just wanted to vent to people who understand. My husband is a police officer. We were invited to a retirement party for a fellow officer on Saturday.
  Most of the officers are aware of my vision and are ok with it. One of the officers there brought his sister to the party.
  Somehow the coversation got turned to my vision and I was explaining it to the sister. She was an RN with the local hospital. She was in awe that I couldn't drive and made the comment " How do you survive not driving?" I was like "well I've never driven, so it's not a big deal". And then she continued going on with my husband as to like "you poor thing".
  When it was time to eat we went into the house and like you all know, I had to let my vision adjust to the lighting. My husband and I have a system worked out in unfamiliar settings where he helps me if he thinks I need it, but doesn't do it for me because he knows how my pride is. Anyway, he was assisting me with fixing my plate and this woman goes up to him and pushes him away and says,"you go relax, I'm a nurse, I know how to take care of her, You've done enough." and proceeds to load my plate with food for me. I was in shock and disbelief. Are people really this stupid in society about blindness? OH MY GOODNESS. I mean, I've been in some situations where people are a bit odd, but this took the cake. I may be blind, but I am not helpless. I told her I could do it myself, but he woman was positively impossible.
  What would you guys have done in this situation? I really could use the advise, because I have gotten to a point that I don't even like going places around people because I am so uncomfortable with explaining this all the time to people who just don't get it! A party that should have been enjoyable was ruined because one person decided to make me an invalid and everyone around them uncomfortable.
  Sorry, but I just need to vent and get this off my chest. I AM NOT HELPLESS!!!!!!!!
  BETH:)
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• We need Help
• Posted: 2007-09-04 06:45:12 By Mose H
• i hope that FFB could be more famous so rich people can help us and donate more mony for research ...my qustion to darren u think that a cure will be able in the next 5 year caus í feel so deppressed sometime ...
  any good rp site with news abot RP research sorry for my english
  
  wish good luk all people
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• RP and Myspace
• Posted: 2007-09-02 22:51:15 By Nick A
• Wanted to leave a quick message on here and say hello. I'm a 31 year-old male with RP. Have had it all my life. I'm putting together a page on Myspace.com for people with RP. Once I have it up and running I hope those of you with RP and in the Myspace world will ask to be added as a friend. My goal for the Myspace site for RP is to further educate people who don't have RP. I will post the link shortly. Nice to meet everyone. Take care
  Nick
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