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• No more driving
• Posted: 2007-10-17 01:17:33 By Mary K
• hello!
  I am no longer driving as I can not see well enough any more. I am hoping to get ideas from anyone?? I have Rp and my vision is getting worse.
  Thank you, mary
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• To Marisa, concerned aboiut father
• Posted: 2007-10-16 12:45:07 By DONALD H
• Marisa,My name is Don, I am 76 years old, I first reallized that I had RP at the age of about 45, I am a meat cutter by trade and did not retire until the age of 65.
  
  I think that you have to have a positive attitude, a sense of humor, and most of all, a great support team from your family, to get through this thing called RP, I have all of the above.
  
  I am retired hare in Florida, I play horseshoes, bocce ball, shuffle board, and bowl, keeping active is totally important.
  
  There are 39 membbers of my blood line that have RP, including two sons, and a grand daughter.
  
  So tell your father to keep on trucking, life is still a blast.
  
  DONHAM
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• Dealing With RP
• Posted: 2007-10-16 10:20:18 By Jamie W
• My name is Jamie. I am an 18 year old male from California. I was diagnosed with Retinitis Pigmentosa around 11 or 12. I'm just starting to have to deal with it in a major way. Thruought life so far, my passion has been cars, mstly doing bodywork and painting. I'm just starting to accept that although this is my passion, the chances are that I won't be able to make a living out of it because so much of the work deals with how the car looks. I was wondering if there is anyoe out there that knows about schools that help the seeing impaired with cars. I love cars, and it is what I want to do with my life, I am okay with leaving the auto body industry, but want to stay around cars. Does anybody know maybe any mechanic schools for the blind? Any help would be greatly appreciated. My email is jamiewancewicz@gmail.com.
  
  Thank You,
  Jamie Wancewicz
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• curious
• Posted: 2007-10-15 17:13:20 By erika c
• my father has been diagnosed with retinis pigmentosa and i am curious if you become completely blind, or just loose partial vision.he is not open with the subject so i am doing research on my own. if you do become blind is it a slow progression,does it take years? i am worried about his safety and driving abilities. night blindness was the first sign for him. any info would be very helpful!
  thank you
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• Seeing Floaters - Trouble Sleeping - any help?
• Posted: 2007-10-15 12:53:57 By Dave W
• My almost-8 year old son has been having trouble sleeping saying his visual floaters are worse at night. He's LCA/cone-rod/RP exact diagnosis still TBD.
  
  On another board I heard gatorade might help (must be an electrolyte, dehydration issue)? ANYBODY ever try this, other suggestions to get the floaters to calm down!
  
  dave
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• Vitamin E in supplements
• Posted: 2007-10-15 10:27:47 By Charlie K
• Hi,
  
  I had read some posts on this board about some people taking supplements. A bit of research showed that most of these supplements have a large amount of vitamin E (along with other things, of course). Keeping aside the fact that any benefits are disputed, has anyone wondered if the vit. E can have a negative effect? I remember reading somewhere on this site that it was found that vit. E should be avoided. So are people buying supplements which dont have vit. E? Or is the vit. E study as contentious as the vit. A study which many people disregard?
  
  Charlie
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• fiance broke off wedding - very sad
• Posted: 2007-10-14 02:56:11 By Al U
• I am in the dumps. My fiancée broke of the wedding because she is totally fearful of our future because of RP. She was freaking out over the past week and admitted that for the first time in our relationship she wasn’t looking forward to marrying me. This was after confirming the diagnosis of RP. Our wedding plans were 90% done (dresses, venue, photographer, invitations, video etc.). She is heart stricken about loosing me but admits she can’t handle it. It tried with all my heart to keep us together but in the end I had to let her go. We left with grief and sadness but with no hard feelings. I can’t believe this is happening. I love her so much and want her back. It is hard to be positive and I am a Christian and struggling with my faith.
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• Looking for family
• Posted: 2007-10-11 14:41:18 By Carol C
• My brother has been diagnosed with XLRP, specifically X-linked Cone-Rod Dystrophy. We have known this was in the family for about 30 years ( earlier blind relatives died not knowing what they had). We have recently discovered that there is a DNA test for our specific mutation, which can determine if a male will develop it, and also if a female is a carrier. I know that the g-g-g-grandmother who had this gene had 8 children, but I can only track 3 of them ( 2 of these passed it on as female carriers, the other male with blindness). I want very much to find relatives who can benefit from this new testing, especially females wondering if they carry the gene. I don't know if all 8 survived to adulthood. If you have any of these names in your family, please contact me: Powell,Porter,Skeels,Barnett,Dixon,Eifert, Sayre.We are from Pennsylvania, Ohio, West Virginia, and I believe North Carolina, and this g-g-g-grandma was born in 1830. Our mutation specifically causes poor central visual acuity,difficulty distinguishing colors,photophobia (bright light causes poorer vision), a "ring scotoma" ( vision loss in a doughnut-shaped area), and later loss of night vision as it progresses. My brother can still see clearly from his far periphery and often turns his head to actually see you better. If these symptoms describe you more than those of typical RP ( poor night vision and tunnel vision), please respond. The lab we are using created a test just for us at this point, as we are the only ones with this mutation they have seen so far. If we can determine relationship, you can easily be tested ( although not cheaply!)Carol C.
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• Genetic test packet?
• Posted: 2007-10-11 14:03:28 By Dan G
• Does anyone know where the Genetic testing packet is? From what I think I read sometime back is that it can provide details about RP and if it can be passed on.
  
  Thanks in advance.
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• retnitab/tostitin
• Posted: 2007-10-11 13:36:38 By jing l
• Anybody tried these two medicine (retnitab or tostitin)? The website are "http://www.retnitab.com/index.html" and "http://www.tostitin.com/index.htm". My husband wants me to try those medicines, but I'm not sure whether they are good or not. I have tried a lot of medicines, but none of them works for me.
  
  Thanks!
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• Question
• Posted: 2007-10-10 12:33:53 By Landy M
• Does anyone know if Nicotine has any effect on RP. I used to smoke and now I che the nicotine gum. Just wondering?
  
  Thanks.
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• Section 255 of the Communications Act
• Posted: 2007-10-09 17:49:39 By Sharmese A
• COAT Members Urge Action by Wireless Industry to Improve Disability Accessibility
  
  WASHINGTON, Aug. 14 —Consumers with disabilities are taking their concerns about lack of accessibility of cell phones to the Federal Communications Commission (FCC) this month, with multiple complaints against numerous companies submitted by representatives of the Coalition of Organizations for Accessible Technology (COAT). The FCC is the federal agency that enforces Section 255, an eleven-year-old law that requires phones designed to be accessible for people with disabilities. Complaints are filed against both cell phone carriers and manufacturers.
  
  "Wire line, wireless and VoIP companies and manufacturers are required to make services and products disability accessible and usable," says Jenifer Simpson, Senior Director of Telecommunications Policy at the American Association of People with Disabilities (AAPD), a COAT affiliate organization that helps consumers file their complaints. "Companies scoff at federal law when they fail to design at the front end for the needs of people with all kinds of disabilities. We urge the industry to take more action now so that people with disabilities, including the growing population of seniors, can purchase wireless phones and services without becoming exasperated and frustrated by unusable phones and unresponsive customer service."
  
  "Millions of Americans use hearing aids, for example," states Brenda Battat, Associate Executive Director at the Hearing Loss Association of America (HLAA), another COAT affiliate, "and this number will grow rapidly as the baby boomers age. It is unfathomable to HLAA why there are new cell phones coming into the marketplace that do not address this need."
  
  "These complaints illustrate a market failure on the part of the cell phone industry to address accessibility," adds Paul Schroeder, VP of the Programs and Policy Group at the American Foundation for the Blind (AFB), another COAT affiliate, which assisted over a dozen individuals in submitting complaints to the FCC recently. "While some companies have taken steps, consumers with vision loss have few good options for accessibility, and almost no reliable information about accessibility."
  
  The complaints from consumers with disabilities include:
  
  
  Cell phones not providing for audio output of information displayed on the screen for users with vision disabilities;
  Cell phones not built for compatibility with hearing aids;
  Visual displays difficult or impossible to navigate for persons with fine motor disabilities;
  No easily-found disability 'point of contact' at the company as required by FCC regulations;
  Number and control keys hard to distinguish by touch;
  Product manuals not available, and not available in alternate formats such as braille or large print;
  No easy-to-find descriptions of accessibility features;
  Phone bills and customer contracts not available in braille, large print, or other easily readable formats; and
  Customer service personnel ill-equipped to handle concerns of consumers with disabilities.
  The Coalition of Organizations for Accessible Technology (COAT) is a new coalition of disability organizations, launched in March 2007, to advocate for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet protocol (IP) technologies. COAT consists of over 100 national, regional, and community-based affiliates dedicated to making sure that as the nation migrates from legacy public switched-based telecommunications to more versatile and innovative IP-based and other communication technologies, people with disabilities will benefit like everyone else. More information about the disability coalition is available at www.coataccess.org.
  
  ###
  
  CONTACT: Jenifer Simpson of AAPD, +1-202-457-0046, or Brenda Battat of HLAA, +1-301-657-2248, or +1-301-657-2249 (TTY), or Adrianna Montague-Gray of AFB, 1-212-502-7675
  
  Wow, I didn't even know that this existed. Did any of you.
  
  Sharmese
  
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• Update Macular Hole Surgery
• Posted: 2007-10-09 11:35:43 By Reyne K
• Hi Everyone,
  
  I have a great update on my Macular Hole Surgery for any oldster (not Darran, LOL) who is interested. It has been 7 weeks and I went for a post op exam again today. I went from 20/400 pre-surgery to 20/60 and the gas bubble is 3/4 gone. I won't ever be rid of the scar tissue on my retina and hence will probably always have the distortion. The vitreo-retinal surgeon from Wills Eye in Phila. thinks that by January I will be back to my 20/40 pre-surgery VA.
  
  I also had to have a zap with the laser for an opacity from the cataract surgery done a week before the MH procedure.
  
  So if anyone gets diagnosed with a macular hole, I highly recommend the Vitrectomy and boring face down positioning after the gas bubble surgery. I have read on PubMed where technology is making the recovery shorter as time goes by.
  
  As far as the visual field loss---they want to wait and see what else resolves in the next post-op appointments.
  
  ~Reyne
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• RP Doctor
• Posted: 2007-10-09 09:17:50 By Andrea B
• Hi,
  
  I found out about 4 months ago that I have RP. I'm 32 years old. I live in a small town in IL. I've been seeing a specialist from Indianapolis and he diagnosed me. He doesn't have a lot of information on RP so I've been trying to get as much info as I can from this site. I have made an appointment with a doctor in Chicago. I got his name from this site. I was wondering if anyone else has seen him. I am going to see Dr. Fishman. If anyone has any experiences with him I would really like to hear them.
  
  Thanks!
  Andi
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• Bioptics??
• Posted: 2007-10-08 20:28:55 By Mary C
• Can someone tell me if these things are legal, and How they work?? I Think it's suposed to be a little telescope to help you see when you are driving! IDK Any help will be appreciated
  
  Coble
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• Bioptics??
• Posted: 2007-10-08 20:28:45 By Mary C
• Can someone tell me if these things are legal, and How they work?? I Think it's suposed to be a little telescope to help you see when you are driving! IDK Any help will be appreciated
  
  Coble
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• Angela, Jennifer and others
• Posted: 2007-10-08 20:15:27 By Marisa P
• Hi,
  
  I know there are several young mothers on this site with RP/Usher who may be interested in corresponding with others in a similar position. I have a friend who is thirty and has two small children who would love to "meet" other young mothers. She's an incredible professional woman and I think you can all learn from each other as you raise your kids facing the challenges of RP/Usher. E-mail me at mpostlewate@yahoo.com if you are interested.
  
  Marisa
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• CNTF Support Group??
• Posted: 2007-10-08 17:20:54 By Andrew S
• I recently recieved an email from Melissa I believe directing me to another email address to request an invitation to join the group. However, I have recieved no reply from this thirt party. If somebody could put me in touch with the support group I would greatly appreciate it.
  Andrew
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• CNTF implant
• Posted: 2007-10-08 17:19:58 By Joshua D
• Hello everyone.
  
  I just had my surgery last Friday for the cntf implant. I was just wondering how long it took others to get their visual acuity back. I can't see anything out of my left eye and my right eye comes and goes a bit. My doctor told me I would see gradual improvement day to day until I get back where I was, but I haven't had any improvement yet. Thanks in advance. Also, if anyone has info on the implant support group please.
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• RP Support Group
• Posted: 2007-10-08 17:04:14 By Nanette K
• Hi - I have a 20 year old son who has RP. We are looking for a support group for him. We live in Central New Jersey.
  
  Please let me know of any support groups.
  
  Thank you VERY much!
  
  Nan
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• My update on CNTF trials
• Posted: 2007-10-07 18:39:17 By carolina s
• Hello everyone
  Since I am getting some requests on updating you on my vision afeter the CNTF implant I'll share with you that at almost 3 months after the surgery I have not noticed any improvement. I am not too discouraged by this since it may take quite a while to notice any changes. I hear that some people have noticed some improvement in their acuity after the CNTF. I am in the early stages study and I am not expecting acuity improvement but visual field improvement.
  Let's keep our fingers crossed !
  Cheers
  carolina
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• Ihave RP, I will be OK
• Posted: 2007-10-07 11:05:44 By Landy M
• Hi, I just wanted to inform the people out there that were so helpful during my stressful time what the outcome of my ERG and testing were. I do have mild RP, the doctor (who was great), said my form is not as aggressive as others. He said that when it manifests at my age that it usually progresses slower. I have to see him once a year and take a lot of vitamin A.
  
  Thank you.
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• Para Marisa
• Posted: 2007-10-06 12:58:55 By Luis G
• Hola Marisa:
  
  Deseo que te encuentres bien al leer este mensaje. Trataré de ser breve. He leido de ti que estás tomando StemEnhance y que en lo que respecta a RP no has visto mejoría alguna pero sí en algunas partes de tu cuerpo. ¿Cómo consigues este producto? Lo solicitas por internet o lo compras en alguna tienda o farmacia? Te lo pregunto porque la próxima semana vuelo a TAMU, College Station, TX y quisiera comprar el StemEnhance. ¿Podrías sugerirme lugares, cadenas, tiendas de autoservicio donde podría comprarlo?
  
  De antemano te lo agradezco muchísimo. Saludos!
  
  Luis G.
  
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• hello
• Posted: 2007-10-05 16:42:25 By brenda s
• Hi,
  
  my name is Brenda and I'm new to the message board. I'm 24 years old and I just been diagnosed with RP . And I feel very lost I don't know what to do . I don't have many people to talk to about my condition no one seem understand. Only person I know who was close to that had RP was my father. But, he is dead now, he pass away with cancer a few month aga. I found out I had RP a month or so before he die. I really wish he could be here to help me but he is gone he would understand. we were really close to one another. when I told him that I was diagnosed with RP he didn't say much because he was so sick. I feel so lost right now my vision has changed alot. I have alot of trouble seeing at night. and I don't know what to expect I hope I can find someone to talk to here.
  
  Brenda
  
  ps, my email address is franknbrenda@aol.com
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• Questions
• Posted: 2007-10-05 16:21:55 By Angela R
• Hi my name is Angela and I am new to the message board. I am from St.Louis and recently read about someone seeing a great doctor. I am going to Dr.Wolfe and I too have an appointment on the 10/16. I have not been diagnosed but I will give some history. My grandfather was diagnosed with RP and so was his brother and his other brother had extremely bad eye sight but never diagnosed. When I was five years old my pediatrician looked in my eye and told my mom I needed to go see Dr. Wolfe (RP specialist?). My mom was checked and told she was a carrier (X-link?). He told my mom to tell me when I was of age to never have any children. I have always had perfect vision and I am married now with an 8 month baby girl. I have been having headaches for months so my husband told me to get my eyes checked. All this information came out because my mom told me not to get worried when they looked in my eye. They dialated my eyes and I was scared to see the doctors reaction (something they had never seen or like they said perhaps the beginning of RP). This is not a topic my family likes to discuss because my mom watched my grandfather go blind. She just told me what this doctor had to say two weeks ago. No one in my family ever researched RP so my mom didn't know what it meant to be a carrier until my husband and I told her. Are there other carriers? And from the information I read I think I may be an X-link carrier? I have so many questions. Are there any that I need to be asking on 10/16? If so I need your help.
  
  My husband is completely worried and if I am a carrier he does not want any more children. I feel blessed to have my daughter and was always open to adoption but this saddens me because I wanted to be pregnant again.
  
  I may be jumping to conclusions but feel totally confused. I apologize but really have no one to talk too.
  
  Please Help Me.
  
  Angela
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• Darran
• Posted: 2007-10-05 12:28:54 By Kimberly C
• Darran:
  You seem very to know a lot about RP. My sister at 46 was diagnosed this week. Does this lead to total blindness eventually? I have researched and found that it's probably very individualized. She is considered to have the mildest form of RP right now but was told she is legally blind and not to drive anymore. Is there anything we need to plan for. She wants us to do nothing at the moment. I'm sure she is trying to process all the imformation to make good decisions. She is going for a 2nd opinion but from what I have research it's a pretty clear diagnosis.She is fearful she has passed the gene to her son.
  Thanks for any info or recommendation you can offer,
  Thanks,
  KRC
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• signs and symptoms?
• Posted: 2007-10-05 07:45:49 By Angela D
• I was diagnosed with RP when I was a very young child. My grandfather and his twin on my fathers side were both born blind.
  I have always had to wear glasses, although in the last few years my eyesight has gotten worse. My eyes will both go blurry and it is hard to see even with my glasses. I wake up sometimes and am not able to see anything for a few minutes. I was wondering if these were signs that the RP is advancing. I have spoken to my eye doctor and all she said was that there was nothing that could be done and that these things were only going to get worse, and that she really didn't know enough about RP to even begin to tell me what I should keep "an eye out for", I am just curious as to what I should watch for...
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• depression
• Posted: 2007-10-04 22:53:24 By karen s
• I am new to the message board, but have found the comments very helpful. I have rp with 5/10% field. I know some of you will say I am feeling sorry for myself and I probably am. However, I no longer drive, my children are grown and living on their own, so I am suffering from the preverbial empty nest syndrome. Since I can't drive I sit here without much enthusiaism for anything. I too resist the cane and hve thought of a dog. Any suggestions for someone on the pity pot?
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• RP
• Posted: 2007-10-04 00:20:55 By Rev. Randy C
• Iam pretty much new at all of this, My son has RP and has had it all his life. He is now in his 20's and his eye site is getting worse about every year to six months. Is there anything out there that I can do to help him ?
  I would love to hear some good news. Thanks for your time.
  
  Randy
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• is that the cure
• Posted: 2007-10-03 10:29:28 By ali k
• hi all am ali am syria am 26 old i have Retinitis Pigmentosa i begane to fell it sence i was 16 , now i have more spots in my eyes i cant see through it but the thing that this spots r not dark only not clear its like u looking through dirty glass so by comparing to other ppl with Retinitis Pigmentosa i think its not the badest one but its make me hit things all the time and fully blind in the dark .
  i read about cur by takeing omega 3 and A + E every day well help to stop the disease and rebiuld the cells
  my question is that truth and if for how long i have to take this pills
  and thank you
  
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