
Blindness & Visual Impairment Support Group
Blindness is the condition of lacking visual perception due to physiological or psychological factors. This is the group to discuss living with blindness, sharing experiences, and for those that may be facing the prospect of a life without sight. Find support and answers among people who know what you're going through.

deleted_user
People,
I\'ve known I was going blind all my life. However, when it began to happen to me I still wasn\'t prepared.
What changed my life was going to a facility call Blindness and Vision Rehab Services of Pitsburgh. It\'s a residential program that emerses you in blindness and training. I hated the idea at first. My rehab councelor pretty much pushed me to go. He has RP too. It was the very best thing I ever did.
I made a ton of excuses about why I shouldn\'t go, didn\'t need to go, didn\'t want to go.
In the end going was the best thing I ever did for myself.
Here\'s the website for them:
http://www.pghvis.org/
You don\'t have to live in PA to attend and they have grants and stuff to help you afford the program. Also -- if you\'re receiving rehab sevices you can request this type of rehab. It\'s a right -- consumer\'s choice.
And, if you\'d like to know more about how I got to where I am (being ok with RP and all) you should read this article I wrote. It\'s been widely published and has actually helped a lot of folks.
Here\'s the link from the Pittsburgh Post Gazette:
http://www.post-gazette.com/pg/05152/513377.stm
If you can\'t access the article that way let me know and Ill send it to you.
Hang in, people! There\'s way worse stuff than going blind :-) Life does go on.
I\'ve known I was going blind all my life. However, when it began to happen to me I still wasn\'t prepared.
What changed my life was going to a facility call Blindness and Vision Rehab Services of Pitsburgh. It\'s a residential program that emerses you in blindness and training. I hated the idea at first. My rehab councelor pretty much pushed me to go. He has RP too. It was the very best thing I ever did.
I made a ton of excuses about why I shouldn\'t go, didn\'t need to go, didn\'t want to go.
In the end going was the best thing I ever did for myself.
Here\'s the website for them:
http://www.pghvis.org/
You don\'t have to live in PA to attend and they have grants and stuff to help you afford the program. Also -- if you\'re receiving rehab sevices you can request this type of rehab. It\'s a right -- consumer\'s choice.
And, if you\'d like to know more about how I got to where I am (being ok with RP and all) you should read this article I wrote. It\'s been widely published and has actually helped a lot of folks.
Here\'s the link from the Pittsburgh Post Gazette:
http://www.post-gazette.com/pg/05152/513377.stm
If you can\'t access the article that way let me know and Ill send it to you.
Hang in, people! There\'s way worse stuff than going blind :-) Life does go on.
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I have accepted that I am legally blind but am still stubborn as to the cane. I use my hands and feet more than anything - people here in town know what the problem is and ask if I need help, which I usually decline, but they ask first anyways.
For now at least I have my woodworking - furniture building hobby to keep me busy, reading is becoming more difficult every week it seems, but I take care of the home - pay the bills clean the house and do laundry etc.
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I\'m the oldest of my sibs -- and 3 out of the 5 of us has RP. They \"look\" to me as a watermark too.
They teach woodowrking skills at the center I went o also. They show people how to do it totally blind. There are all kinds of gadgets you can use that talk to you to keep going with that.
I wonder -- if your wife couldn\'t drive anymore -- how would SHE expect to be treated? Maybe there are no RP support groups there -- but there must be psychologists somewhere near you. She needs to deal with her feelings. This is the \"for better or worse\" part of the marriage deal. If she got sick would she want to be resented for it? It isn\'t fair to you. You\'re already dealing with a lot. You don\'t deserve this too.
I think it is harder for men than women to have this happen to them. Men are still expected to \"be in charge,\" and all that. My brother just recently lost his license. It\'s been hard on him -- but his wife is supportive and doesn\'t make it worse for him.
Maybe it would help if you did some things to take control of your life again? Get into Voc Rehab? Find another occupation -- or a way to do the job you were doing without sight.
BTW -- rural living is nice -- but not terribley practical for someone who can\'t drive.
This is a major life change -- for both of you. Maybe you all neeed to make some real decisions about how to handle your lives in a new way.
I know I can\'t fix whats wrong with my retinas - at least not yet - and have adapted to using my hands and fingers more. I can even find stuff in the junkdrawer that my wife can\'t lol.I don\'t feel sorry for myself at all - its a matter of adapting is how I look at it, and I have money coming in to at least pay the bills. Its my relationship that has me down, not my blindness.
I am the sighted person in my marriage. I would be happy to email your wife about my feelings. I am in this for the long haul - in sickness and in health with my spouse! I have had my selfish moments, my times of resenting what has happened. For us it came on hubby fast. He did have warning signs, that he chose to ignore, and to be honest that made me mad, no downright angry! But hey, we move on. I can\'t wallow over what if for the rest of my life!
We just found out in October 2006 that he was legally blind. We have a training center here in Oregon, about a 2 hour drive from where we live. I am going to print out the Pittsburg article and read it to him. (We don\'t have a talking PC yet.) He is resistant to going. 11 weeks seems like a long time, but since he lives in Oregon this is a FREE opportunity for him. I want to encourage him to take this training! I think he is worried that I won\'t be able to handle being away from him that long, however I think it will be the best thing for us both - he needs specific training that I can\'t provide to him on my own.
Keep up the good fight, thanks for being there!
Blue Heron
I like that name! I LOVED your article! May I print it and read it to my hubby? I\'m not sure he will like it as much as I do, he is still the King of Denial, but I think he needs to hear how someone else has dealt with their issue.
Hubby has a bachelors degree in counseling. He can see everyone else\'s faults, flaws and failures so clearly, but isn\'t seeing that he needs help too. I am frustrated with the self pity, but I am NOT going to give up on him! I value him too much to do that!
Thanks for the article radiopeg! I don\'t think my hubby wants to be called BlindXXXXXXX either, so this might be a good thing for him to hear.
BH
Thanks for the offer of talking w/ her - I may just take you up on that.If I can get her to see and KNOW she\'s not alone in this then the better we\'ll all be. She\'s also \"empty nesting\" as her youngest daughter ( we have 5 daughters total- none together) has now moved back to her Dad\'s and the rest are on their own - kinda.
I understand at least some of the difficulties you and she face, but like Peg said its happening to me, and we need to move forward together.
I have attempted to get back into my former job, but they are having budget crisises again and it make take awhile if at all.I\'d still be with them if they had the technology they use now and work from home. They wouldn\'t spend the money for me to work remotely, but now the whole department does 2 years later!
Thanks again for the responses its good to vent a bit
BH -- nobody has a "talking PC" :-) There are programs you install on your comp -- like JAWS or Zoom Text -- that have text to voice features. Open Book and Kersweil allow you to scan books and other printed material and then it reads it back to you. Technology is THE KEY to making the world more accessable to blind and visually impaired folks. Training is very important.
Personal Adjustment to Blindness training is also key to living successfully with vision loss -- and not being a nurden on your family and loved ones. While it isn't our fault we're lsoing our sight -- it doesn't mean we have to be dependant on everyone around uis or be a burden. That's NOT fair to our sighted friends and family.
(and ps... even iif your hubby DID pay attention to warning signs -- he still couldn't stop what's happening to him)
My BF has optic atrophy and we're both severly visually impaiered. We shop, clean the house, go to classes, go out with friends, do laundry and travel all over the place. We just went to Florida all by our own selves this past Thanksgiving. Just us and our litle white canes :-) How? We've been properly trained!
Good luck to all of you. ANd keep moving forward.
The National Federation of the Blind at NFB.org began a mentoring program last summer. You can get a mentor to help with most of the issues I have seen on this board.
I use adaptive equipment and work as a management analyst for the fed gov.
Good luck to all of you :)