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• Who's responding?
• Posted: 2008-01-29 15:10:44 By Darran Z
• I have gotten several responses to CNTF Update to my comments but no comment posted. I would ask that if you are trying to post, try responding to this or try a new thread. Maybe yoru post will come through.
  
  Darran
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• CNTF update
• Posted: 2008-01-29 12:56:14 By Paul S
• So I went for my 3-month visit and was informed of the change in the study.
  
  Originally I was to have the implant removed after 1 year and then have several follow-up visits to make sure things we OK.
  
  Now at one year, I have the option of leaving it in and then I will have 1 final follow-up visit 6 months later and then the study is over, no more visits.
  
  Since the capsule has so far show no negative impacts in studies this change saves Neurotech a lot of money on the explant surgery. Unfortunately, since there is no long-term follow-up we may never ultimately know the long-term benefits.
  
  
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• Iowa Update
• Posted: 2008-01-29 00:58:38 By Stephanie R
• Hello Darran and everyone,
  
  I haven't posted in a little while but wanted to update you on my visit to Dr. Stone a week or so ago. Thank you so much for bringing him to my attention! The whole place, but especially Dr. Stone, was just wonderful.
  
  Anyway, it seems that I am quite the anomaly. I have x-linked cone-rod dystrophy as a manifesting carrier and also the optic neuritis that is associated with multiple sclerosis. I also have MS. He said my optic nerves had been "dinged" by the optic neuritis which causes the episodes of "dimness" like someone has turned out the lights and everything gets blurry after I read for an hour or so. All my other symptoms are associated with the CRD.
  
  I have the distinction of being the only person he has seen with this particular combination of diseases in the same eye! At any rate, I am so grateful to finally have answers and know what is going on after years of stumping every doctor I met.
  
  Thank you so much for letting me know about this man. I think he is probably one of the very few who could have sorted this all out. And I have never seen an eye doctor that said, "I know what is wrong," so that was worth the trip itself. Food in Iowa is good too ....
  
  Steph
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• Anybody in the northern california area.
• Posted: 2008-01-28 18:57:40 By Robert W
• Hey i was wanting to know if anybody lives in the northern california area and wanted to start some kinda support group or something. If so hit me up at bobhowr2005@aol.com. I just got diagnosed with RP last month and im now facing a medical board with the Air Force.
  
  Bob
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• CNTF Question
• Posted: 2008-01-27 14:39:30 By Dan G
• Does anyone know if the company that created the CNTF chip, plans to come out with a new model after all the results are in from the clincal study? I was not sure if this was something they could make adjustments too or not.
  
  Dan
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• CNTF Update??
• Posted: 2008-01-25 20:28:26 By Rick H
• Anyone have any updates on the CNTF study? Any problems or improvements?
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• Reading
• Posted: 2008-01-25 15:34:12 By Bridget S
• Hello,
  Just over the past few weeks, it has gotten so hard to read anything. I love to read magazines, but everytime I try it just gets blurry and foggy. I used to be able to just close them for a little bit and go back to reading. I am a stay at home mom, and I don't drive so reading helps pass the time. Are there any type of things that can help with reading?
  
  Thanks,
  Bridget P
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• SSDI eligibility
• Posted: 2008-01-25 12:50:07 By Tab V
• I have a question regarding SSDI for a 4 yr old that was recently diagnosed with RP. Does he have to be considered legally blind in order to qualify for benefits or will the condition itself qualify him? Any info anyone has would be greatly appreciated.
  
  Thank you!
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• TAX rebates
• Posted: 2008-01-24 16:49:06 By Eddie L
• do the people getting a disablities check get this tax rebates that the government is giving out. i have 2 kids and my wife does not work.
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• RP chatroom
• Posted: 2008-01-24 09:21:05 By Jane D
• Hi Everyone!
  Happy New Year to all of you!
  
  Just a reminder that on Wednesday nights it is the RP chat room and lately no one ahs been there but lets make it come alive again and chat with one another.
  Jane
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• long term disability insurance and career choices
• Posted: 2008-01-23 17:12:21 By Charlie K
• I have a question about long term disability insurance. Are we RP'ers eligibile? I mean would insurance companies give us this insurance knowing that we will 'use' it one day for sure (discounting medical advances of course)? If yes, then shouldnt we just take this insurance just before we cant work anymore? How does this work?
  
  
  
  Does the above apply when employers offer this type of insurance? Also I read somewhere that you are eligible to get 60% of your original salary as long term disability, which should be lot more than SSDI. Why then dont I hear anyone talking about that on this board?
  
  Also I would like your opinions on whether with RP would it be a better idea to go work for public or private universities or large corporations? I might have a chance to choose among these as faculty or as a researcher. But I am not sure who would be more supportive when they find out. Universities I feel should be more supportive as they may not care as much about 'money'. What do you all think? My condition isnt as obvious now, but will be in 3-5 years.
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• Driving
• Posted: 2008-01-23 13:46:19 By Christy P
• Hello All,
  I'm a 32 year old single mom. I was diagonsed with RP when I was 17. My mom and grandfather have it so I was familiar with the condition. my mom was able to drive until she was in her early 50s so I sorta assumed I would have the same luxury. I am now legally blind and know I need to turn my keys in pretty soon. Does anyone have any advice to make this transition easier. Giving up driving has been my 1 fear and I don't know how to face it.
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• Aids for the blind and visually impaired
• Posted: 2008-01-22 22:52:18 By John A
• Hi Everybody!
  
  It's been a long time since I have posted on this board, soforgive me if my question has already been discusse or answered.
  With this the gift giving season past us we are now in the ladder days of returning the items we recieved. I have visited many of the retail web sites that are marketed for the blind and visually impaired and none of these web sites offer a product rating like some of the major web sites do. I don't know about the rest of you but i have and my family has had to return many products that were designed or thought to be useful for the visually impaired or blind.
  If only there was ratings or a little blurb about the product which were tried by other visually impaired or blind consumers it would have saved a lot of headache and frustration having to returne the item. The picture they offer of the product doesn't do me any good at all. But if somebody has already tried using the item and then posted a blurb about it's performance or operation would be a great help for all of us. I know I have a few opinions as I'm sure the rest of you do as well.
  My question is...
  Is there a web page or list with this type of product information ?
  
  Thanks
  ja
  Keep fighting blindness!
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• Long term disability
• Posted: 2008-01-22 21:16:09 By Tracey W
• I have a question. Has anyone gotten long term disability from their employer? If so, how hard is it to get it? I've known that I have Usher's since I was 12 and now I am 44. I always thought that there would come a day that I might have to take disability but now it is hard for me to believe that it is getting close. My job requires alot of reading and numbers. My vision has been narrow for a long time but lately my eyes get so tired and I am starting to have headaches. I also feel like my glasses are dirty but they aren't - it is like a haze. Is that normal?
  
  Also, for SSDI, would I be able to get it for my kids, too?
  
  Thanks for any advice.
  
  Tracey
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• salvation army
• Posted: 2008-01-21 12:31:28 By Nikki s
• hey all, now i know this has nothing to do with rp but was wondering if someone could help. ok so the salvation army person is coming to pick up stuff tomorrow and i dont know how to price used stuff. the slip says to write down the amount so you can use it as a tax deduction. i normally just drop it off but the b/f is slackin so i need to ger rid of this stuff. i have tried their website on things you are allowed to donate and could not find a list either. sooooooooo does anyone know what else you can donate other than clothes and how to price things ???
  THANK YOU!
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• Specialist closest to me?
• Posted: 2008-01-21 12:22:56 By Bradley C
• Does anyone know if there is a list of RP specialist that is close to me? I live in Alabama and I've heard of one that is in Kentucky but I can't remember his name. I've been to the RP "specialist" here in Alabama and it seemed as if I knew more about than they did. It was kind of ridiculous in my opinion. Anyways, if someone could point me to a list I would appreciate it.
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• Income tax
• Posted: 2008-01-19 20:56:07 By Eddie L
• I just finished my first year of disablitie payments from social secrutiy and was wondering , do they send me a w-2 tax information so i can file my federal taxes? started gettinbg my 1st check in july last year. so only have 6 monthes ,
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• Elections and Stem Cells
• Posted: 2008-01-19 16:30:42 By brian n
• Keep in mind, this is a very important election year. Upon recent investigation, Obama appears to be a staunch advocate of Government funded stem-cell research. In fact, he helped draft the bill that would have significantly expanded the cell lines that qualify for government funding. Unfortunately, our benevolent President vetoed. I know there are alot of serious issues (e.g., the war, economy, immigration) but this is a serious issue for those of us who frequent this website.
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• Prototype Electronic Contact Lens
• Posted: 2008-01-18 19:44:46 By Jonathan R
• I found an interesting article about an electronic contact lens.
  
  http://www.eurekalert.org/pub_releases/2008-01/uow-clw011708.php
  http://www.eurekalert.org/multimedia/pub/6552.php?from=107729
  http://www.eurekalert.org/multimedia/pub/6553.php?from=107729
  
  I would be nice if they could integrate some decent resolution light amplification versions.
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• Question about diagnosis
• Posted: 2008-01-18 15:54:41 By Becky N
• I have never posted here but read others post often and have found alot of the information very helpful. I recently obtained a copy of my medical records and instead of helping it has only seemed to confuse me more. The dr. has indicated that his impressions are rod/cone dystrophy and minimal macular edema. He also indicated my visual field testing showed constriction to ten degrees. The ERG I had done many years ago states that I have advanced disease of the outer retina such as RP as all waves were flat during the test?. But the diagnosis that is listed is macular schisis which I have never heard of and can not seem to find alot of info on either. Has anyone heard of this?? Should I seek a second opinion??
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• Update on 11yr old 'probably RP'
• Posted: 2008-01-17 06:55:11 By wendy f
• Hi,
  Well its been a hard few weeks here. The eye doc rang me on 17th Dec to say my daughter has all the signs of RP without the Pigmentation. Darren gave advice. We had to then 'sit it out' over the Xmas period and wait for everyone to start back to work...
  In the meantime I discovered my daughter is having serious problems getting around in the dark, in busy places, in using stairs etc, and has what I would describe as pretty severe tunnel vision.
  So, this week we've been to the VI assessment clinic. Present was our Peadiatrician, an Optomatrist and two VI teachers.
  They told me my daughter probably has Usher Syndrome (I'm not shocked, I had my suspicions)They said her ERG 'showed extensive photoreceptor abnormality' Her visual acuity however is very good at 6/6 both eyes. She has no clour blindness and can read at font N12
  They offered 'sightd guide' training but that was about it. They didn't know anything about Usher really and said they haven't had one before!
  I remembered when I got home to ask what degree of loss she has with the tunnel vision and I'm waiting for them to call me with that info.
  Educationally we have a school with a VI unit but no HI experience and also a school with a HI unit but no VI experience! My daughter prefers the light in the school with the VI unit, she says the HI unit school is too dark.
  They are keen for her to go to the HI unit school but I'm concerned about her safety as mobility is a problem already for her. Also the school has alot of 'pillars' on the day we visited she walked into two!!
  She was referred to Addenbrookes to a Miss Allen, I rang to chase the appointment and was told Miss Allen says its so rare that she is referring us straight to the geneticist and won't see my child herself! I kicked up a fuss and now she has agreed to see us next week, 23rd. They will do visual field then eye drops for Miss Allen to look in her eyes.
  Any tips appreciated. I'm not impressed with how blaze they are about it. I don't feel any of them know enough about the effect Usher has on a person life...
  Thanks Wendy in the UK
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• CNTF Problem?
• Posted: 2008-01-16 16:09:16 By Larry G
• I have a problem that I think is related to my CNTF implant. Prior to receiving the implant I have been taking eye drops of Nevanac and Trusopt for my CME without any problems. I take the drops because I had a bad reaction to Diamox sequals. Since the implant I have developed an allergic reaction to the drops. Has anyone else experienced anything like this, with or without having the implant?
  
  Thanks,
  Larry
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• Legal clinic for blind's vision: justice for all
• Posted: 2008-01-16 15:52:58 By Dudley C
• Super article in today's Chicago Tribune: Legal clinic for blind's vision: justice for all Veteran jurist helps the visually impaired with legal troubles. His insight? He's blind too.
  
  http://www.chicagotribune.com/news/local/chi-blindjudge_16jan16,0,4355400.story
  
  
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• SSA: Ticket-to-Work Program
• Posted: 2008-01-16 13:45:17 By Darran Z
• It seems many are confusing the fact of working while Disabled. I suggest everyone who is considering getting SSDI and think they can work and apply for it read the "Ticket To Work" Program and publications of the SS site.
  
  The way this works is set up for those who ARE ALREADY ON SSDI and trying to get back to work. NOT WORKING AND APPLYING FOR SSDI, it won't fly that way. They will deny you if you are working, even part-time, no matter how much money you are making. The amount of money you earn while trying to apply for SSDI is irrelevant as they look at you as being able to work, not what you do.
  
  The trick of the trade is understand HOW these rules apply to you. Understanding the different phases (Trial work period, Extended period, and the final period--can't remember what it's called). Each have DIFFERENT rules applying for the $1570 that someone who is Statutory Blind to be able to work and keep their SSDI benefits.
  
  But if you are currently working and thinking you can apply for SSDI and keep your job (even if your income is below the SGA limit of $1570) you will be in for a surprise. I can gaurantee you will be denied.
  
  Darran
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• Anyone in Michigan?
• Posted: 2008-01-16 09:17:47 By danelle t
• At the beginning of March there is a five day expenses paid mini adjustment in Traverse City Michigan, and I am wondering if anyone on here is going?
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• any advice on picking a medicare supplemental insurance policy and drug coverage
• Posted: 2008-01-13 19:45:36 By mary o
• Hi everyone! I haven't posted on here for awhile but I read this everyday. I will be eligible for medicare in March of this year due to drawing disability for my rp. I would like to know what companies, policies, benefits, drug coverage, etc. people have chosen. Or did you stay on your present insurance coverage and take the medicare. I'm on my husband's insurance now but it is quite expensive. I've also heard that if I turn down the medicare now, it will be more expensive later. Does anyone have any advice on this matter? Thanks in advance!
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• DIFFRENT STAGES
• Posted: 2008-01-13 13:30:33 By HAMZA A
• I JUST WANTED TO KNOW WHAT STAGE PPL ARE WITH THERE RP LIKE I CAN NOT SEE PEOPLES ARMS AND LEGS WHEN I LOOK AT SOMEONES FACE IS ANYONE AT THIS STAGE ?
  IF SO HW LONG DOES THIS STAGE LAST
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• SOCIAL SECURITY
• Posted: 2008-01-12 17:47:47 By Nikki s
• Hello all,
  
  I was wondering if anyone knows if your disability checks are always a month behind.. for example do you get paid decembers payment in january? and january in february and so on??
  
  and is it possible for them to not pay you for a month?????!!!
  
  THANX!
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• 50 years UNTIL FOR A CURE
• Posted: 2008-01-12 15:55:32 By HAMZA A
• I READ MARISSA P SAYING SOMETHING ABOUT A CURE IN 50 YEARS IS THAT TRUE THATS CRAZY LOL A LONG TIME I HEARD 2 YEARS FOR A CURE AND I ALSO HEARD 10 BUT 50 IS JUST WHOA
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• Support group for PEI
• Posted: 2008-01-12 15:09:26 By Heidi W
• Hi everyone i'm Heidi and I have RP. I just created a support group for anyone living in Prince Edward Island. I'm looking to meet other visually impaired people like myself so please feel free to join. Thanks
  
  http://groups.msn.com/VISGPEI
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