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• Short and Long Term Disability through an employer
• Posted: 2008-03-20 18:49:19 By Christy P
• Hello All,
  I've read about the process many of you have gone through applying for SSDI but has anyone applied for short or long term disability through their employers insurance (with a private insurance company like Unum or someone like that) and if so what was that process like for you?
  
  I am starting it now and wondering what I'm in for.
  
  Thanks,
  Christy
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• Treatment?
• Posted: 2008-03-19 19:42:04 By Elvia D
• My 5 year son was just diagnosed, what treatments can I seek for him now?
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• GOOD NEWS
• Posted: 2008-03-19 17:32:59 By HAMZA A
• READ HOMEY`S
  
  http://www.standardnewswire.com/news/474542427.html
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• CNTF update
• Posted: 2008-03-18 22:20:58 By Carol C
• MY brother had his 6 month check-up today on his CNTF implant, and , again, they would not give him any specifics, but said to him: "yes, this is a good day!" He notices improvement all the time. Of course, he's still quite visualy impaired yet compared to someone witout RP. He has 1 year to mull over the idea of leaving it in. They told him that if he chooses to leave it in longer, and then needs it out, he'll have to cover the cost. This will be substantial as I can't believe his insurance would touch it as it was research/ experimental. It seems to me like they might come up with a Phase II 1/2 or something, letting some keep them, and study their experience over many years, but I guess that would take different and MORE grant money. His checkup included an ERG, bloodwork, and exam by the specialist in charge, who said everything looked great. He has no more checkups until completion ( Sept) when he will get a field of vision test, among other things. Another note: he met a man at his mobility training classes with the exact symptoms he has, and he has never met anyone before like himself. Has anyone else experienced seeing a light that moves around rapidly in an arc around the edge, then disappears? This is different then the flashing lights, which he also has.
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• Prism glasses for peripheral vision
• Posted: 2008-03-18 16:59:06 By Elizabeth J
• Does anyone know of the latest research or lastest invention for peripheral vision expansion for the RP condition? Just seems like there should be glasses or some device that would expand the visual field. I have the 20/20 vision but was wondering how to expand the visual field if possible. Liz
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• looking for info
• Posted: 2008-03-17 12:51:32 By howard h
• hello, im a 45 y/o male in penna.i was dianosed 2 years ago with rp.i dont know much about this.does this always lead to total blindness or is this a progressive thing to where it may take years to lose my vision all together? thanks, howard
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• Looking for doctor recommendation in Boston area
• Posted: 2008-03-17 10:43:33 By Kristy A
• Hi all,
  Can anyone recommend a retinal specialist in the Boston area? I have seen Dr. Berson and Dr. Tang but am looking for a another doctor to be my regular, long-term specialist. If it is helpful to know, I have early-stage RP.
  Thanks so much,
  Kristy
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• necessity of ERG post-diagnosis?
• Posted: 2008-03-16 12:52:32 By Kristy A
• Hi everyone,
  I'm trying to ascertain whether it's necessary for me to have an ERG regularly, as my doctors have recommended. I'd love to hear what you all have learned from your doctors.
  
  I'm in the early stages of RP and have seen two retinal specialists; both want me to have an ERG every year to two years. Is this necessary? I had one ERG when I was diagnosed with RP two years ago. The doctors recommend the tests be done regularly to be able to measure the progression of my RP. I simiply don't see the use, and I felt that I experienced a noticeable decrease in my vision after the test. any thoughts?
  Thanks,
  Kristy
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• Flashing lights again
• Posted: 2008-03-15 15:46:25 By Benny M
• I know this has been discussed here before.But I don't recall it being said whether people have flashing lights in one eye more than the other or if it's the same. I have been having bright flashing lights in my right eye for 2 or 3 years on a fairly regular basis (Like at least once a day, usually more.).With an occasional light in my left eye (Maybe once a month). They break up and go away pretty quick. Here lately I've been getting them more frequently in my left also, like several a week. When I get them in both at the same time, they are a mirror image of each other. Which makes it kind of hard to focus on anything.
  So I was wondering if they affect anyone else this way or if it's different for everyone? Also could it be a sign my RP is getting worse? Thanks.
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• Off Topic
• Posted: 2008-03-15 15:32:34 By Cynthia M
• My 13 year old daughter is missing. It is believed she may be in the El Cajon/San Diego CA area or anywhere in AZ. If you could please visit my blog at http://mygreat8.blogspot.com to see her picture I would greatly appreciate it. Magui has RP, which was diagnosed in March of 2007. Her last visual field a year ago, showed her at around 40 degrees visual field left. In January, it was found, her RP had progressed quite a bit.
  
  Thank you.
  
  Cynthia
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• public transportation
• Posted: 2008-03-15 02:30:14 By John T
• I just moved to Minneapolis from a medium sized city and am trying to fiugre out the best option for public transportation. In my previous location, there was only one bus on my particular bus line so it was easy for me to hop on and get to where I needed to go. Now, in a large city, there are multiple busses but I can't see the number to ensure being on the correct bus. Has anyone traveled down this road? what did u do? My job requires quite a bit of transportation so I'm trying to manage.
  Thanks,
  John
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• Information
• Posted: 2008-03-14 22:11:04 By Corinne T
• Hi,
  I am studying to be an adaptive physical education teacher and right now I am working on a research paper on RP. I have the basic information on what RP is but I am looking for more in depth information such as physical characteristics, social/emotional characteristics, and cognitive characteristics. Also what activities would or woulnd't be beneficial for an individual with RP. Can anyone possibly help me out with informative sources to find this information? That would great if you could.
  Thanks in advance.
  
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• Coping at Work with low vision
• Posted: 2008-03-13 19:06:17 By joan s
• Hi,
  
  I am new to the world of message boards but I need help and don't know where to start. I am interested in finding some other people with issues similar to mine so that we might share ideas for coping with low vision at work.
  
  Here is my situation. I am an engineer in a large chemical company. I work in an office. My vision is not bad relative to many with RP, about 20/70. I have what seems to be an unusual expression of RP: in addition to losing peripheral vision, I also have macular blind spots.
  
  I have special computer equipment and readers to allow me to do my desk work. I thought that I was dealing well enough to do my job. In fact, unless I tell them, most people don't know I have a vision problem. Today's technology is great but there are somethngs I am really struggling with, like how to communicate effectively in large rooms whn I can't see people's faces, can't make eye contact, need extra time to read slide presentations...
  
  Anyone been through or going through this and have suggestions for coping? I have lots of quesitons.
  
  Joan
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• im new
• Posted: 2008-03-13 12:07:47 By jana p
• my son is 5 found out he has rp last year, still feeling the loss of hope for the future for him, i just need to talk to people who are dealing with this and am at lost for what to do, when i look at him i still cry, will this get any eaiser? janap
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• New to board
• Posted: 2008-03-12 17:16:28 By Zane B
• Well I have been living with RP for a very long time. Yep my vision stinks and I don't even bother getting glasses any longer. They truly don't help much anyway. I use adaptive technology which is much fun. On a state committee for updating accessability for our state systems.
  
  Has anyone tried Tostitin. Sort of sounds like a snake oil pitch. Pricy too. $115 for 80 days. Has anyone tried it and gotten any improvements.
  
  Just saying hello...
  
  zane
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• MOVING
• Posted: 2008-03-11 20:01:00 By Jacqueline B
• Hello all, My 19 year old daughter who has RP has met someone, he understands the diagnosis and the future for her.YEH! The only problem is they are considering moving to Ohio. We live in Florida now. Does anyone know how to find what services are available in Ohio? Besides a snow plow!LOL
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• myreader or myreader2
• Posted: 2008-03-11 17:50:39 By Rick H
• Has anybody had any experiences with either of these machines Thank you Rick
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• RP kid on Long Island
• Posted: 2008-03-10 23:31:39 By Helaine K
• Hi - my son is 7 and was recently diagnosed with RP. We did not tell him yet. I'm sure there are parents with young children with this disease and I was wondering how they are handling it in terms of what they are telling the kids. Also, we live on Long Island and would love to talk to some parents who have children with RP - we could use the support. I met wonderful people at the FFB seminar last month and I am so grateful! Thank you!
  
  Helaine
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• Seeing Eye Dogs
• Posted: 2008-03-10 07:27:57 By Jamie W
• Hey everybody, I am Jamie. I am a 19 year old male in San Jose, CA living with retinitis pigmentosa. For as long as I can remember I have always had trouble with field vision and night blindness. Now that I am 19, I am starting to drive, with my doctors permission. Obviously, I cannot drive at night. But my question is.... In San Jose, where is a good place to go for seeing eye dogs, and do you think I would be a good candidate for one? Thank you all.
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• SS benefits
• Posted: 2008-03-09 16:02:59 By Vicki T
• Hi everyone. Last month I applied for SS benefits, over the phone and then filled out all the forms and mailed them back, etc. They told me it could take 3 to 5 months to reach a decision! Wow, why so long? Since my vision is now 20/50 and a VF of less than 10 degrees, I'm assuming I would be condidered legally blind. Is that correct? (the poor VF is what would be the determining factor here since my VA isn't poor enough yet) How long did it take some of you to hear back from SS? I can't understand why it should take so long since all they really need to do is confirm my condition with my eye Dr., right? I am currently not working and could definately use the income. (Thank goodness my husband works.) Just wondered if some of you heard back in a shorter ammount of time. Also wondered how long it took to get your first SS check. Thanks......waiting patiently, but not liking it, :)
  Vicki T
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• please explain,...
• Posted: 2008-03-09 08:55:02 By Patience T
• I have RP, my parents and sibings dont. My husband does not have it...my question is what are the stistics in this case, which I know many people have been in. I have 2 children and one on the way, what are the odds of my children being affected. I know nothing is in concrete but Im just curious as to typical odds.
  
  Thank you
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• RP, a congenital disease?
• Posted: 2008-03-08 19:18:39 By Luis G
• Hi all,
  
  If RP is a genetic disease does it mean it is a congenital one?
  
  I'd like to know if insurance companies in the US exclude or not genetic or congenital diseases. Well, I have just realized that my company contracted a life insurance and also bought an additional coverage for total and permanent disability. I wonder if advanced RP can be considered as a total and permanent disability, and if insurance companies (at least in the US) includes it in their list of conditions.
  
  Hope to hear from you, greetings
  
  Luis G.
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• CRD/RCD
• Posted: 2008-03-07 15:55:24 By maris s
• Which one is a more severe form of RP? and is a non-recordable ERG consistent with CRD or RCD form of RP?
  Please help
  
  Maris
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• CCTV HELP
• Posted: 2008-03-06 22:35:42 By Rick H
• I am new to this message board.
  I am 44 years old and was diagnosed with cone-rod dystrophy two and a half years ago. I am having trouble reading more than a page or two at a time.
  My eyes will fatigue and I start seeing yellow lines throughout the page. I am looking into a cctv I have seen the MERLIN 19" LCD
  and the DESKTOP CLEARVIEW PLUS by OPTELEC and yet to see the MY READER machine. I am also debating portable or desktop. I realize it is personal preference; however if anyone has any good or bad experiences with these machines I would appreciate it. Thank you Rick H
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• Stem Cells
• Posted: 2008-03-06 19:35:17 By Luis G
• Hi everybody!
  
  I just want to share the following:
  
  http://www.advancedcell.com/press-release/advanced-cell-technology-announces-completion-of-pre-ind-meeting-with-the-fda-for-rpe-therapy-for-the-treatment-of-retinal-degenerative-disease
  
  What do you think?
  
  Luis G.
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• New Findings Chat on 3/6
• Posted: 2008-03-06 18:28:33 By Jeanette P
• Did anyone participate in the "New RP Findings" chat from today? I tried to join but some setting on my laptop was not allowing the chat software to work so I gave up. Chat is still going on for another 30 minutes but there is no phone number to call for Tech Support so guess I'll just read the transscript. I did have a few questions to ask. Oh well. Does anyone have any suggestions for how I can maybe get the chat box is appear next time? It was there but nothing was in it. REALLY and I could have seen it if there was :-) My central vision is still very good. Thanks for any suggestions! Jeanette
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• diamox and cme
• Posted: 2008-03-06 14:05:48 By Nikki s
• wow did i open a whole new can , ok so a while back i posted that i was being treated for my cme , i tried some drops they did not work i went and did the steroid injections and they worked real good at first now my left eye is the worst its ever been before i started seeing this specialist!!! he said the pressure wont come down so he cant inject my left eye and so now there is nothing else he can do for me except try the diamox..oh and now he says within the month i now have a cataract in my left eye soooooo i went to fill my diamox rx 500mg and it was 200 dollars!!! oh goodness so i called and asked for the generic which is 250mg but waaaay cheaper ..the 30count is like 14 bucks..oh good ness i just knew i shoulda never got the shots!!! now i am worse off than i was...and will definately get secong opinion on the cataract..cuz wow that formed quick..
  anyonw else have to pay that much for the diamox??? i sure hope this works its my last resort i guess other than that i live again with the cme and i am right back to where i started thats why i hate the specialists!!!! GRRRR
  sorry had to vent
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• I will eventually have to have laser surgery.
• Posted: 2008-03-05 00:26:14 By Patrick C
• I went to the eye doctor last week so I could get some contacts ordered. She told me that I'm developing cataracts on both eyes and she wants to see me again in 6 months to check up on them.
  
  I have a question though. I asked her this, but she wouldn't give me a straight answer to my question. I will talk to her about it more when I see her.
  
  Most or all of you know that when you wear contacts, it takes away your near sighted vision. When you have laser surgey, they put a prescription lens in your eyes. I was wondering if you could get a neutral lens (like a natural lens instead of a prescription lens) and still wear contacts, so I could have the option of being able to see up close or not. I already have enough trouble reading as it is. I don't want anymore.
  
  Also, many people are working on cures for RP, and I'm very hopeful that one will come out in the not so distant future. If you have a prescription lens put in your eyes, could they take it out and put a non-prescription lens in your eyes so you could recieve the cure?
  
  Any insight on this would be appreciated. Thank you.
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• Yep, Im the CNTF rulebreaker...
• Posted: 2008-03-04 22:12:45 By heather p
• Hey everyone...It has been awhile since I have posted anything-the last 6 months have just flown by. I have just returned from a month long trip to Europe (where even with bumpy cobblestone streets and tons of stairs I didnt trip once! YAY) and am 5 months pregnant. Neurotech has been womderful about letting me keep my implant. As many of you know, one of the rules for the study is to not become pregnant or breast feed while in the study. THey said it was fine and that I might just need to undergo additional testing but overall weren't too concerned. I was so relieved!!!
  
  The implant itself is fine. Haven't noticed any huge change but like I said, made it traveling around and did pretty well considering. :)
  
  Hope all is well with you and I'll try to pop in more often. Cheers!
  
  
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• Vitamin A Palmitate?
• Posted: 2008-03-02 19:57:48 By Vicki T
• Hi everyone. Are there any "vitamin experts" out there? I want to know what the difference is between vitamin A Palmitate and the other vit. A from fish oil or other ingredients. I read an article many years ago on the benefits of taking vit. A for people with RP but it said only the type derived from Palmitate was effective. Has anyone else heard that? If so, why is that? I used to be able to buy that kind at the drug store but now I can only find the fish oil type. Guess I'll have to shop online to get it now? I'm up for trying anything if it helps slow down this disease. I'd appreciate any replies on this subject. Thanks!
  Vicki T
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