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• To Marisa P
• Posted: 2007-09-02 19:28:57 By Michael Z
• Hi Marisa-
  
  I noticed that you are on the better health eye program. Do you take all those pills all together in the morning or do you do half in the morning and half at night.
  
  As far as micro current stimulation. I was doing it for about a year and a half. I had to do it 2 times a day - 20 minutes each time. It got so time consuming and my eyes needed about 30 minutes adjustment time afterward each session. I stopped because I didn't feel any progress was being made. I saw no improvements and my RP did get worse. I have been off it for about 2 months now and I feel my vision has gotten more blurry. I'm actually going to restart it tomorrow. Maybe its all in my head. Who knows.
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• Has anyone been denied SSDI
• Posted: 2007-09-02 16:54:47 By Sharmese A
• 
  Hi All,
  
  Has anyone been denied SSDI due to RP, if did you appeal it and did it held? After the appeal did you win and start receiving SSDI? I don't know what to do I applied for SSDI, on April 1, 2007 and just this weekend I received a letter stating "I am not disabled under their rules". On March 27, 2007 I took the Goldmann field test (i think that what its called) and the next day my low vision specialist called and told me that my test came back not good declaring me "Legally Blind". So the low vision specialist sent the results to my Retina Specialist and they both said the same thing and told me to STOP driving because i could seriously injure/kill someone. Seeings how my job is 45mins.-1hour away from my home, I resigned from my job and applied for SSDI. I really don't know what to do. Can someone please help me with any suggestions.
  
  Thanks,
  Sharmese
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• re hi to nitish b
• Posted: 2007-09-02 06:13:59 By Sarah E
• hi nitish b, jUst saying hi back to lyou. It is good to hear from you. talk to you later. sarah.
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• micro current therapy
• Posted: 2007-09-02 00:17:02 By Bob m
• I was wondering if micro current therapy in conjunction with supplements is effective on RP. I have seen some small clinical trials that looked promising but they involved only a handfull of peopleCan anyone shed some light on this?
  Thanks
  Bob in Seattle
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• re lietulane affect on rp
• Posted: 2007-09-01 06:50:07 By Sarah E
• hi n foshera, i hope i'm spelling this right, if i'm not i'm sorry. I have rp and cataracts. Can youi send me the results on htis please.
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• re re hi
• Posted: 2007-09-01 06:47:08 By Sarah E
• hi martha n , it is good to hear from you. It is always good to htink positively. I hope thare is a cure for retinitisis pigmentosa soon. Have you heard about the retinal chip? I have heard a little bit about it, maybe they are further along with it now. I look forward to hearing from you. Talk to you later. Sarah.
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• re re hi
• Posted: 2007-09-01 06:43:22 By Sarah E
• hi martha n , it is good to hear from you. It is always good to htink positively. I hope thare is a cure for retinitisis pigmentosa soon. Have you heard about the retinal chip? I have heard a little bit about it, maybe they are further along with it now. I look forward to hearing from you. Talk to you later. Sarah.
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• Hello
• Posted: 2007-08-30 17:41:16 By Leslie B
• Both of my sisters children and my two children have RP. Yet I can find no family history of RP before this. I was just wondering if this is normal for most if you can trace it back.
  
  lbrewer@pirs.org
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• To Darran Z
• Posted: 2007-08-30 12:39:18 By Joseph D
• Hi Darran - I have a question for you that I would prefer not posting to the group because it is kind of personal in nature. Would you mind emailing me? I would greatly appreciate it. My address is Joseph.Diggins@gmail.com
  
  Thanks.
  
  
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• affect of lutein on RP?
• Posted: 2007-08-30 08:11:12 By sherif a
• i want to know if i use lutien may by harmfull for RP or not because i have cataract and as i red the lutein is good for cataract.
  
  thanks for help....
  
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• re hi
• Posted: 2007-08-30 04:34:14 By Sarah E
• hi karen s my name is sarah and i'm anew user. i would like to chat with other people with rp . It is good you stay very positive. I try to do that myself. Sometimes it doesn't work though. I would like to talk more with youi and other people with rp. Talk to you later. sarah.
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• hi everybodyy
• Posted: 2007-08-30 04:28:36 By Sarah E
• hi everybody, hOw are you?Ihave an answer for marisa p i keep busy by volunteering at an independent living center. There are people there with all kinds of different disabilities. It has given me a different perspective on my own idsability. This message board has been very helpful thought. Ihave gotten to meet and talk to other people with rp. I can see how they deal with it.
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• newly diagnosed
• Posted: 2007-08-29 20:52:36 By Angela F
• Hi, My name is Angela Fontana. I am 26 and I was diagnosed in May with RP. My dad has it and I am the 1st of 5 children to be diagnosed. Two of my sisters probably have it but have not been officially diagnosed with it yet. Our doctor said to start 15000IU of Vitamin A. Does anyone know where to find it and if 15 yr olds can take it? and what about DHA?
  Thanks,
  Angela
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• late stage cntf trial
• Posted: 2007-08-29 20:42:52 By Nikki s
• well i went for my screening and i was told the trial i qualified for was closed..i am pretty sure it was the late stage one seen how i could only read the top line and one on the secong line.
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• Hi
• Posted: 2007-08-29 01:03:19 By Karen S
• Well, i haven"t been on here in along time so I will re intriduce myself. My name is Karen I live in Layton, Utah I am 30 I am married and have three girls. I found out i had RP when I was 20. I have no perifeal vision left at all. I think I do pretty good and I try to stay positive. I would like to here from anyone who wants to chat. It helps to know there are people out there who have what I have and understand. My email is- tksummerhays@msn.com
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• Frustrated
• Posted: 2007-08-28 20:50:12 By Michael Z
• I am almost 33 years old and was originally diagnosed with RP in 1983. I am blind in my right eye and have blurry tunnel vision in my left. As many of us, I am just so frustrated with what this disease brings. When is a cure going to come? CNTF won't help me because I'm already in the advanced stage. When is this stem cell therapy going to be a reality? If our next President is pro stem cell therapy, does anyone have any ideas when we can see a therapy?
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• Anyone currently have the ECT CNTF Implant?
• Posted: 2007-08-28 18:46:17 By Rick H
• I am scheduled to get the ECT CNTF implant on 9/7/2007 and would like to get feedback from anyone who has had the implant or currently is in the clinical trials. Has anyone experienced any bad side effects? I have RP and will take part in the Late Stage study.
  
  Thanks,
  
  Rick H Michigan
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• cataract and macular hole surgery
• Posted: 2007-08-28 14:01:10 By Reyne K
• Hi Everyone,
  
  Two weeks ago I had cataract surgery. I must tell anyone who is contemplating it, to go for it! They inserted a UV blue blocker Alcon intraocular lens and the whole procedure took about 10 minutes. Piece of cake!!
  
  But then the following week I had an ILM peel with a vitrectomy on the same eye. This was done due to a macular hole. Needless to say, this was probably the most anxious I have ever been in my whole life. The surgery went well even though the gas bubble has not resolved yet and will probably take up to 8 weeks. In the mean time, my acuity is only counting fingers and that is if they are 1/2 inch from my eye. The hardest part of this surgery was the 24/7 posturing afterwards. That means face down and don't do anything all day. Now they have got it down (in my case) to 5 days. I would say to anyone who has lost their sight to a macular hole to go for it as it will give one additional years of sight. I am only 56 and this usually happens to people in their 70's. The ILM (internal limiting membrane) peel was done to take away any scar tissue on the retina causing distortion. I am really doctored out, but was so pleased with the Wills Eye Surgery Center in Philadelphia. They treated me like a queen and were so professional and kind. You don't know what dilating drops are until you have it for surgery. These lasted for 2 days along with a facial block that was kind of scary! As the song goes...Let it go, the worst is over! :)
  
  Reyne
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• Saying Good-bye to Sight and Sound
• Posted: 2007-08-28 10:34:45 By andrew b
• Many of you know that I have Ushers Syndrome, a degenerative disease that causes blindness and deafness. If you know me well, you know I'll never quit fighting, never stop racing for a cure, and never stop loving the life I'm so lucky and blessed to have. With any serious ailment, its important to vocalize your thoughts, so I've written some thoughts below that express many of the wild emotions that often cross my path.
  
  
  
  
  To Sight and Sound I'm saying good-bye,
  Weeping over your loss, ever I cry.
  Like no unwelcome guest, it pains me to say,
  God please, if only you could stay just another day.
  
  
  
  When you go, you take too, too much with you.
  The Embrace of a strangers Smile,
  The Gut-wrenching hilarity of my best friend's Laughter,
  The Warmth of the Sheen in my wife's hair,
  The Envelopment of each new word my son Says,
  Please don't go, there's still too much to do.
  
  
  
  Why now do you want to leave, have to leave?
  Was it something I said, something I did?
  If only you could give me answers please,
  If only it's a jest, or with me you kid.
  
  
  
  Over and over in my head, I see what I will not see.
  The ebb and flow of the waters of Capri.
  The enormity of the Grand Canyon ever so deep,
  And the beauty of my son, at night asleep.
  No more customers who's hands to embrace,
  Due to this evil, against which I race.
  
  
  
  I know not the day nor the hour,
  Only that your bags are packed and ready to go.
  Keep you forever I would, if I just had the power,
  Of what I can do, I simply don't know.
  
  
  
  Please, please, please, what Powers that be,
  Grant me this wish to continue
  to
  Hear
  and
  to
  See.
  
  
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• VisionWalk - Join my Team
• Posted: 2007-08-28 09:43:35 By andrew b
• If you don't have a team already, please join my team, or donate through my team. I'm walking in the Atlanta VisionWalk on the 11th of November, and need help to beat my goal of $2,000. Last year my team raised 1600, so $2,000 will be a stretch. Go to visionwalk.org then search for team "Bryant". If you have any questions, please feel free to post them here.
  
  dru
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• Hello Looking for someone to talk to
• Posted: 2007-08-28 00:10:22 By Jessica A
• Hello all my name is Jessica and i am 21 yrs old. my family understand want i am going threw but only a few of my friend understand i am just looking for some friends that know what i am going threw and someone to talk to about this i have had rp since i was 14 yrs old my email addresses are
  almondj02601@hotmail.com
  forfer_urs_2@yahoo.com
  Thanks Jessica
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• Blind Climber
• Posted: 2007-08-27 19:07:55 By Nikki s
• I saw this on my local news, thought it was interesting!
  
  Mt. Kilimanjaro
  
  
  Training in Grand Haven
  
  
  Climbing Kilimanjaro
  
  
  By JACK DOLES
  
  GRAND RAPIDS - Some people live for a challenge. They see the highest mountain, and they feel the need to climb it.
  
  Bill Barkeley can't see the top of the mountain that he's going to climb.
  
  Mt. Kilimanjaro.
  
  "Unfortunately I don't know what it's going to take to get to the top. But I know it takes a lot of climbing," he said.
  
  Barkeley, 45, will climb to the top of Mt. Kilimanjaro, the crown of Africa, a climb that will take him through six eco-systems before finally reaching the icy summit 19,000 feet above sea level.
  
  Barkeley's vision is a 20-degree field and narrowing. Before too much longer, all he'll see are pictures of adventures past ingrained in his memory.
  
  "If I'm going blind, I would like to see the best the world has to offer."
  
  Kilimanjaro has plenty to offer. But everyone who makes this trek has two major hurdles to overcome - fitness and altitude sickness.
  
  You can't prepare for the heights, but he's doing everything he can to get fit. He trains two-and-a-half-hours a day, with barbells stuffed in his backpack and using walking sticks to negotiate his way around a nature trail in Grand Haven.
  
  More often than not, he pushes his body beyond limits he thought possible. "That's where doing something to do something, versus doing something with a purpose, makes a difference in doing something 10 times versus doing something 30 times. You're going to do it 30 times."
  
  As crucial as it is to get fit for this mission, Barkeley couldn't make the climb without help from a guide and from technology. Blindness is not his only obstacle.
  
  When he was 5 he began losing his hearing, 23 years before he started losing his sight. Doctors diagnosed him with Usher's Syndrome, a rare disease that strips its victims of both senses.
  
  When the visual component hit at 28, he became one of 15,000 people in the United States - and only 100,000 in the world - to lose both senses.
  
  "I said to people, ‘I feel like I won the Lotto," he said.
  
  But it's the type of thing that can rock a man to his core and shatter his faith.
  
  "He's got a plan," Barkeley said. "You just got to have faith that there's a reason."
  
  Instead of getting caught up in wondering why or withdrawing into the inevitable darkness, he chose a path "about what you can do with your energy. You can go to the negative, and you can let people or things dictate what that will do to you. Or you can go, you know, hey, it's not easy. It's not the road I wanted. It's not perfect. But you know what, I can still do some pretty cool stuff."
  
  His positive energy is rubbing off.
  
  When the Hear the World Foundation learned of his upcoming plan, the organization gave him a $10,000 grant for a new Phonak FM system.
  
  Now he'll be able to communicate with his guide, Jeff Evans, as they make their way up the mountain.
  
  Usher's Syndrome, he said, is the best thing that ever happened to him "because I think that it's kind of like, if you've been given everything in your life, sometimes people don't know what to do with all of the gives they've been given. Sometimes constraints can become the greatest harnessing power to helping you go somewhere."
  
  Barkeley wants to turn this adventure into an opportunity to help others. "It's about telling the world about hearing disabilities and the fact there's a lot of things people can do, and there's not really much that can get in the way."
  
  All it takes, he said, is a vision.
  
  "That's why I think I'm being called for this project," he said. "It's bigger than me. It's part of God's plan. There's something going on there. I've been wearing these hearing aids since I was 5 years old. This is a message that needs to get out.
  
  "I've been asked to do it. And I'll do it."
  
  Bill Barkeley begins his trip September 12. Follow along on 24 Hour News 8 and on woodtv.com
  
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• confussed about 2 different rp msg boards
• Posted: 2007-08-25 10:56:46 By carolina s
• Hello all
  I have been checking msgs by going to community and then messages and then click on rp, however I noticed that if you go to first to rp and then click on msgs it takes you to different postings....So which one is it ? why are they 2 different ones for rp vs one or am doing something wrong ???
  thanks carolina
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• re hello is anyone out there
• Posted: 2007-08-25 05:39:59 By Sarah E
• hi amanda m my name is sarah. I'm trying to get to know other people with rp myself. If you want someone to talk with you can email me at sarahedwards21@yahoo.com. I'm 30 years old and have been dealing with rp all of my life.
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• new user with rp
• Posted: 2007-08-24 11:21:55 By Sarah E
• hi my name is sarah i'm a new user and i have retinitis pigmentosa. i was just wanting ot chat with some other people with retinitisis pigmentosa.
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• 4 year old son with RP
• Posted: 2007-08-23 22:40:34 By Lis A
• Hello everybody. I am Lis from Panama. I have a 4 year old son that is diagnosed with RP and I am devastated. I need someone to talk to and give support. Does anybody have a son diagnosed so early. Please help me.
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• worse in the morning
• Posted: 2007-08-23 09:15:58 By julia b
• is it just me or do a lot of you find your vision is much worse in the morning?
  Julia
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• HELLO IS ANYONE OUT THERE
• Posted: 2007-08-22 23:29:29 By amanda m
• hi my name is amanda i am 18. i live in the usa. illonio to be exact.
  i have diagnoised since a very young age. and am still very young. cept i have NO perphial vision whats so ever. they say my rp is progressing very fast. they think i will be blind by 30.
  i just want someone to talk to. you know someone who knows what is going on.
  MY PARENTS DONT UNDERSTAND
  MY SISTER HAS IT BUT SHE IS TEN TIMES BETTER THEN ME
  I HAVENT EVEN BEEN ABLE TO TELL MY BOYFRIEND YET.
  qustions go through my hesad all the time. what will i do if i go blind what will i do.
  im just looking for someone who knows. and just for new friends
  please email me at
  lilmerbaby@yahoo.com
  thanks cant wait for the emails
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• Facing Myself
• Posted: 2007-08-22 13:51:39 By Bradley C
• The past couple of weeks I've had some real iisues with facing myself and some of the aspects of my life. I'm learing that although I have a eye disease that is currently impossible to cure, I can't let this control my life. You see not only does our disease affect the people that are closest to us, so can our attitudes toward our disease. I learned that it is hard enough on the people that love you the most just dealing with the everyday things that you go through with the disease. Then on top of that, for the most of us, we have a really poor attitude toward certain situations. So this in turn makes it twice as hard on the person that is helping us get through this time in our lives.
  I've also struggled with my beliefs the last couple weeks. Before I start I'm not trying to push God on anyone or any way shape or form trying to push a religon on you. These are my opinions. I've been raised a christian my whole life, and I attend church regularly. One thing that I'm learning is that for me to be able to live a happy well meaning life. I have to be able to accept that I have a eye disease and no, things aren't going to be the same for me as they are other people. This is opposite of what my church tells me to believe. I should believe that God can and will heal my eyes and that I shouldn't speak the eye disease over myself. So they kind of collide with each other. On one hand I need to learn to accept the disease and live my life to the fullest and on the other hand I need to live my life like I don't have an eye disease and proclaim that I don't. The times that my eyes have been prayed for is something crazy. I keep asking myself is there something that I need to do, do I lack faith, what am I doing wrong? This is becoming a real issue in my life.
  So saying all of that, I just wanted to let you guys know that our eye disease is hard enough on the people around us. They want a cure for us just as bad as we want it for ourselves. Let's take the inititive to realize that the people aroudn us hurt to. That other people have real issues in their life. Understand that when the person your walking with is only trying to help you when they tell you there is a step to watch for, that there is a person your about to run into, that it isn't wise for you to walk to the store alone, and my wife's famous "arm tug" when i'm about to run into something. They don't do these things to aggrivate us. They are trying to help and instead of us giving them grief with remarks like "I KNOW", "I CAN SEE THAT", "IT'S DAYLIGHT, I DON'T NEED YOUR HELP", "I CAN SEE JUST FINE". Let's just be thankful that we have someone to help us along the way.
  Sorry I'm rambling but.. I just felt like I needed to get some things off my chest.
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• Acai berry
• Posted: 2007-08-22 09:33:02 By Tim B
• My wife's grandfather has been recently taking the juice MonaVie. Its main ingredient is the Acai berry, which has many many nutritional benefits, and also has 19 other juices. The Monavie has helped him feel not so sore. It helps inflammation, heart, cholesterol, etc. But its very expensive. A month's supply is between 100-140, depending where you buy it. You can buy just the Acai capsule for a lot less.
  
  Has anyone heard of Acai and do you think it would help the RP?
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