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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

I feel so hopeless about my macular degeneration

My vision has been deteriorating rapidly. All the joy in my life involves reading, writing and photography. I have tried to look up web site info on jobs and it appears there is very little that the blind can do for a career that isn't "make busy" work to pretend I can work. I currently drive and teach high school, but I do not know how much longer I can drive to work. What's weird is that my distance vision seems to hang in but my ability to read is little or nothing. My retina surgeon doesn't seem to be interested that my life is collapsing around me because, as he puts it, "your vision isn't anywhere near as bad as some of patients. I am so depressed. I am in my early 50s. My dad didn't have macular degeneration until his early 80s. I can't imagine going blind. I would rather be deaf and be able to see. I don't see any possibilities or training out here in the middle of no where.

There are currently 17 replies


Re:I feel so hopeless about my macular degeneration



blind people can do just about any kind of work, and its not busy work unless if that is what you want. I know there are teachers who are blind. Check out nfbnet.org they have an email list of blind teachers I think. Learn how to use jaws and that kind of stuff if you all ready haven't. The Hadley School for the blind offers free courses including braille. Don't give up now; you're still young.


Re:I feel so hopeless about my macular degeneration



If you still like reading, you could use braille, like someone else said, and also you could get audio books on tape. For your vision, try to except it. You can still do things that people who don't have vision problems, but you might have to do them a different way. Good luck!!!


Re:I feel so hopeless about my macular degeneration



I know it's easy for us who have been blind since birth and whatnot but I also understand how scary your situation mus be; however, it's not the end of the world. I'm sure there are plenty of things that you will still be able to do, yes there are visually impaired teachers out there and not just people doing "busy" work.
Keep the faith and everything shall go well.
Mimi


Re:I feel so hopeless about my macular degeneration



But you don't get it - right now I am living in the countryside and transportation is an issue, too.


Re:I feel so hopeless about my macular degeneration



I think I can relate. I found out 2 days ago about my condition Macular Degeneration. It's very scarry. I'm 48 and never ever thought I'd be having these kind of problems. I've worn contacts for years but have noticed drastic changes with my vision over the last couple months. Have an appt with a specialist tomorrow and certainly hope he doesn't tell me I'm not as bad as some of this patients - that's just bad business. I think I'd try to find a new Dr.
How about an occupational therapist? Now may not be a good time to start a new career with all going on. I'm a word processor and don't know how this is going to affect my job, only time will tell.
You hang in there and take it a day at a time.


Re:I feel so hopeless about my macular degeneration



Yes, I understand that! I live in the country too. There is no public transportation in this entire county! I wait on friends and family to get me where I need to go but I HATE to ask. If you have medicaid they will take to dr appointments and such but I don't have that either. I miss going out to my car and going all by myself! I am out of the way for everyone. But its better than moving in town. I'll deal with it.


Re:I feel so hopeless about my macular degeneration



I know how you feel also. About 5 years ago I was diagnosed with macular degeration while we lived in Al. When we came to NC to live I had to get a new Dr. She was under the impression that I was born with it and it would be a slow progression and has not done to much to it. Last year I lost some vision in my left eye. It was not because of the macular deg. it was retinal vessel occlusion a blockage to a vein or artery, which causes hemorrhages & swelling in the eye. So for the last year she has been trying to stop the hemorrhaging with shots and laser and nothing is working. I went yesterday for a second opinion. This dr. also did a full workup and looked at both eyes & point blank told me I will be legally blind in less then 2 years. So now I am on line reading what everyone has to say about it, and I'm scared.


Re:I feel so hopeless about my macular degeneration



First, remember that you are loved, and that people enjoy an opportunity to help someone who's handicapped. My husband is legally blind from hereditary macular degeneration, as are both of his sibs, and a niece and nephew in their 30s. His mother, 2 aunts, and grandmother all had it. It seems to hit about 50 or so, and gets worse, of course (degeneration). My mom (a teacher) had it, too. There are laser treatments if you catch a rogue blood vessel in time. Most blind people do not "work", per se, but can supervise the grandchildren, prepare the food for family gatherings, entertain children with stories, and so on. But here's a practical suggestion. Throughout the U.S. there are many schools for the deaf and blind that hire deaf and blind teachers. Check that out, and if you luck out, move close to the school, preferably within walking distance. Transportation continues to be a problem, as programs are usually for people with more "profound" disabilities, such as paraplegics. Get good with your cane, and don't be afraid to get out in the world. Blindness is awful, to be sure, but look at it as a challenge. If a teacher can't learn a new way of life, we're all in trouble. Hang in there! If all else fails, write a book!


Re:STILL so hopeless about my macular degeneration



So you just said most blind people don't work but they can take care of the family children? That is what option I have? I promise you, I am not a babysitter type. I have worked all my life and I don't know what I can do to keep my professional career. I teach high school students. I have news for you. They would NOT be cooperative and attentive, no matter what the theorists tell you, in a classroom with a blind teacher. They already notice that I can't see what they are up to on my right side.

I have disability insurance but they say that I can't use it because I am not blind enough. They said that I can get jobs that get minimum wage. I am NOT ready to give in to this yet.

I do NOT romanticize losing my vision and it bothers me that so many do. Just look at the job listings. They are few and far between and certainly not a liveable wage in that "in-between" stage of "almost blind enough" and blind. I use up my sick days on visits to the doctor to get shots in my eye. I would love to see what the AFB actually does for professionals who want to keep their job.


Re:I feel so hopeless about my macular degeneration



the earlier you adapt to the changes, the happier you will become.
and I don't think the school can fire you because of your disability, I think that's illegal. About your students. that would be a good lesson to teach them how to respect people who have disability.


Re:I feel so hopeless about my macular degeneration



Reading through this thread of conversation I was touched by mixed feelings. While pleased to see the encouraging advice some have shared, I was also troubled by the comment that people who are blind or visually impaired “don’t work per se.” That is misinformation. While some choose to be homemakers and are good at it, as others pointed out, people with vision loss DO work and in many different careers. I love the fact that you said you “are not ready to give in to this.” That’s a very positive signal on your part.

What does the AFB do to help people with vision loss who want to work? Go to AFB CareerConnect, our free online program designed to expand employment possibilities for people with vision loss and read the Success Stories to see the vast array of jobs people are doing. Note the common thread throughout all the articles. Each and every person took the time to become competent using blindness compensatory skills. They learned Orientation & Mobility so that they could travel independently, assistive technology for computers so that they could have access to the same information everyone else has, they learned to use other devices and means of reading, writing, keeping records, etc and they learned self advocacy to present themselves to a sighted world with confidence. All of these folks, myself included, now enjoy a full, meaningful life as a result.

There is far too much information to post here but, suffice it to say that many, many, many people who are blind or visually impaired are successful educators; some teach high school, others elementary or middle school and some post secondary level. You name the subject and they are teaching it. In addition to compensatory skills, part of the process for them was learning about job accommodations which made working possible. If you live in the U.S., by law these accommodations are available for you as well. The law also prevents your employer from firing you based on your disability. I would suggest taking advantage of these protections and look into taking a leave of absence and enroll in a rehabilitation program for people who are losing their sight.

Through CareerConnect you can connect with any number of educators with vision loss and talk to them about their careers and how they do it. Many components must come together for a person to be successful and the two best ways of making this happen are becoming a client of your state rehab agency or a private one and talking with others who have “been there, done that.” This is where the CareerConnect mentors come in to play.

Vision loss is not something a person can go alone. Professional help, through rehabilitation agencies, is needful and available at no cost to you, as is a connection to talk with CareerConnect mentors. Please feel free to contact the CareerConnect staff if you need help using our program. We wish you the best and will support you in your endeavors as best we can.

Detra Bannister, CareerConnect Program Specialist
http://www.afb.org/careerconnect


Re:I feel so hopeless about my macular degeneration



Dear friend do some daily selfless services outdoor or online as you like.By doing this first of all tension remove and your sight also increase because if you increase your virtue your all problem remove automatically.


Re:I feel so hopeless about my macular degeneration



bargate on 01/10/2010

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Yes, Yes, gate gate, paragate, parasamgate, bodhisvaha... I know Buddhism, too. But again, the problem is when you are in the middle of going blind. My so-called GOOD eye just got a detached retina. Again, my specialist says not blind enough yet. I work 60 miles from where I live. I moved in with my mother who is 30 miles closer, so I am far from my children and husband M-F. I am trying, but can I can only wonder how I will get to work in a year or two. Oh, another problem. The agency that works for the visually impaired is another 45 minutes to the south of where my real home is, and the agency that works for the visually impaired where I work won't let me use their services because I don't live in the area. So, it all involves driving.

I am very scared and especially angry. I love to work and I love all the things that are visual.


Re:I feel so hopeless about my macular degeneration



Wow...i came online this morning to try and get some hofeful guidance in this area.
My father was declared legally blind at age 48 in 1960, and his older brother at the same time. My father was one of the head diesel mechanics at the big garage where he worked.
My older brother was declared legally blind at 68. He was retired from the Navy and another career.
I am now 59. I would consider myself legally blind in my left eye, although I've not had an official diagnosis due to no health insurance.
I am in the process of trying to find all the information I can about careers for the blind.
I've gotten a couple of leads on info from these postings today, but what I sense more than anything with all this, is the "thread" of frustration that is commonly felt by ones who are losing their vision and finding difficulty with getting help simply because they are not "BLIND ENOUGH"....how sad.
My father was amazing. He started a plant nursery that lead him into his 2nd career of lawn landscaping and maintenance. He had that business for 15 years with 2 crews before selling hit.
I pray I can be as resiliant as him.
God's best to you all...


Re:I feel so hopeless about my macular degeneration



Missustoad:

I had a Detached Retina on what used to be my strongest eye about 1.5 years ago. The Surgery made
the eye much worse than it was before the surgery and it has stayed the same since, except now it is sliding again. My other eye remains good. But for how long? And should I bother getting my DR eye which may be now going down for the count looked at? The surgical techniques are basically witchdoctor voodoo. I guess if a person's eye loses the retina completely, it will have to be removed sooner or later. Loads of fun. I hope to work another 6 years. Since no one knows why my one eye completely went to heck, no one knows how long I have left on my good eye. And I have NO idea where I'd go to get my good eye worked on. I figure once you have any type of surgery on an eye, it will never be what it once was.


Re: I feel so hopeless about my macular degeneration



Hi my name is Anabel and i was told by an retina doctor that i have macular degeneration, well im only "15" Yeahiknow wo im so young tohave that.i been reading your stories and the more i read the worst i feel because no one relates to me. you all talk about how you cant really drive or work, but none say that HIGH SCHOOL is horrible and that i cant never drive or even end up blind or not be able to be a dancer. i believe its harder for me because im so young. you guys already drived before or evn reached your dreams. You see me driving will never happen. But NOW im putting my faithin God because this pain is so deep no psycoligist can help me feel good only God "Amen" any questions?


There is hope through knowledge!



Hello my name is Dr. Jared Cooper, I am a Low Vision Optometrist specializing in the visual treatment of those suffering from macular degeneration. If you are frightened for your parents then you are not alone. I heard this so often that I actually wrote an article specifically for the children of parents diagnosed with the disease. Please feel free to read it the article, I am sure the information will help you be better suited to help your loved ones. Feel free to contact me if you have any questions.
Dr. Jared Cooper
Cut and paste the Article onto your address Bar:
http://www.drjaredcooper.com/what-children-of-the-...


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