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AFBAmerican Foundation®
for the Blind

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Slowly Going Blind. Advice Wanted.

I have glaucoma and am slowly losing my vision. I'm told that I will eventually go blind since there is no cure. Surgeries can slow it down, but not stop it. So no matter what I do I will be completely blind one day . So I figured I'd better start preparing now while I still have sight.

Basically, I'm wondering if anyone out there has some advice for me in how to cope with this. The reality of this is starting to sink in and has me a little scared. What should I do to start preparing myself for becoming blind? Are there places that can help me (I live in southern CA)? Are there state or government institutions that offer free services?

I'm sure there are a thousand questions I could ask. if anyone has any advice it would be GREATLY appreciated. Thank you!

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Re:Slowly Going Blind. Advice Wanted.



Good morning,

Doctors do not always know whether you will or will not lose your vision due to many conditions including glaucoma. I hope you plan on taking good care of your eyes and follow their directions such as with drops and such.

It is tough to be told that you will be completely blind, I think many of us who utilize these messages boards may have heard that. I know I heard those words around my 18th birthday. The doctor told me that I would be totally blind by 25 or 30. I am 31 with a couple of degrees of vision left. I definitely believe it is important to prepare and start filling your toolbox with the tools that will help you to succeed in life. There are many organizations and resources that you should learn about & utilize.

CA has a state vocational rehabilitation agency and has a division of blind services with in that agency. This is a state agency that receives federal funds as well, to help prepare or rehabilitate persons with disabilities. This could habilitation (get them to work for the first time) or rehabilitation (get them back to work). They will be a great resource and you will have to work with them (be persistent). Depending where you are in the southern part of CA depends on the organizations that will be applicable to you. The Junior Blind is based out of LA, but has outreach. They are an amazing program that serves adults as well as children. They have a residential program (people come and stay during the week to receive training) there too. There are programs in the San Diego and other areas in your state. I would contact your state VR agency which you can find through AFB's directory of services on afb.org. Most organizations will want you to be a client of VR or will help you to become one.

I would explore AFB's message boards and family of sites such as: AFB CareerConnect (aimed at helping teens and adults who are visually impaired get to work through resources, mentors, articles and other content); FamilyConnect (resources for families of children who are visually impaired); Senior Site (designed for seniors and families of seniors who are losing their vision); AccessWorld (a free online magazine that evaluates technology and such); AFB Press (you can find related AFB books from our online book store); and a lot of other great information through AFB.org.

The Hadley School for the Blind at www.hadley.edu. An online or through the mail school aimed at helping adults and students get blindness skills. They can send tapes, large print, or be accessed through the web. These are free!

Online catalogs such as maxiaids where you can find products and such. (Would consult with counselors from VR or local agencies first though).

Support groups and counseling can be very important during the adjustment process. These message boards can help with that, but I suggest counseling as well. I know it made a big difference for me.

The National Federation of the Blind and the American Council of the Blind are two consumer groups for the blind that help advocate and can be useful for the adjustment process; they would be able to aid you in finding resources as well.

This is just a start, I hope this helped a bit!

Sincerely,
Joe S.
AFB Staff


Re:Slowly Going Blind. Advice Wanted.



Thanks very much for the detailed response, Joe! I REALLY appreciate it. I am looking into much of what you wrote. Thanks again for this!

--Mike


Re:Slowly Going Blind. Advice Wanted.



No problem, I hope they help you out. If you have anyother questions, let us know.

Sincerely,
Joe S.


Re:Slowly Going Blind. Advice Wanted.



This video on Youtube might help its based in California and its a series that comes on on the adaptive channels i believe. its called CrubCuts
http://www.youtube.com/watch?v=lRaPP5vTm-o
Its got many interesting things in each episode and they talk about services
hope it helps your actually living in a pretty good area for services I've been looking for services myself and most of the services and websites are in California rather than in my area in North Carolina. I can't even find a reliable place to teach me skills like O&M I had to learn the skills on my own using only a few guide lines. Which because of the lack of reliable resources I have basically been crippled from getting a guide dog from most schools because of the lack of major O&M skills.
Which back to the services in your area their are several down-loadable,large print and braille book agencies in your area in addition to using places like itunes theirs i believe its called Lighthouse for the blind
http://www.lhb.org/
,Freedom scientific offers a lot of great software,screen readers,magnifiers, CCTV s The SARA is a pretty nice product I've been meaning to try all you have to do is scan the books pages and press play and the voices are human and easy to understand.
http://www.freedomscientific.com/
ai squared has created some amazing products one I'm positive you know is ZOOMTEXT
http://www.aisquared.com/products
Another site that has a lot of products for the blind and visually impaired is the American printing house for the blind
http://www.aph.org/
I hope those come in handy
Lindsay
Washington state school for the blind
http://www.wssb.wa.gov/Content/offcampus/video.asp...
Larry Colbert's guide dog. Banner
http://www.youtube.com/watch?v=YZ17L8j6bsY
Larry Colbert
www.DrivingVision.com


Re:Slowly Going Blind. Advice Wanted.



Thank you kindly, Wingman! Good stuff!


Re:Slowly Going Blind. Advice Wanted.



the best advice i can give is from practical experience..follow your deoctors advice...take the medicatios and vitamins as directed... it is very important to have caregivers...if caregivers are not available try to locate in a nursing home that will fulfill your needs....find a good nursing home will be very difficult.........the demand for nursing homes for the blind is tremendous ...however the supply is very small.............hope................ this info helps,...


Re:Slowly Going Blind. Advice Wanted.



There are a lot of things I could say, but...here are three.
First, I am so sorry; as one who is mostly blind, I dread thought of losing more, but I know it must be way more difficult for one who has had sight. Secondly, learn Braille. You won't regret it. Finally, network! Talk to blind individuals and their families! I would be happy to communicate with you through e-mail.
My address is laneytroutman@carolina.rr.com.
Blessings,
Laney


Re:Slowly Going Blind. Advice Wanted.



I just found this resource, great responses and support, thank you!


Re:Slowly Going Blind. Advice Wanted.



My MD tells me I am the only patient he has had that describes my loss of vision in 'Claratin Clear' terms. When I wake up some mornings, I can barely make out the outline of the furniture - detail is covered with white film not darkness. By noon, it's better and I can function. Others say it is getting darker as they go blind. I have glaucoma and realize some day I will need help, but the claratin clear film puzzles me. .


Re:Slowly Going Blind. Advice Wanted.



Abledata is a Govt. supported database of assistive techno;ogy (AT), including vision impairment in all degrees. Here you will find descriptions and information about things like magnifiers (glass and electronic), and systems that turn print to speech and files to speech. There are some user reviews (the sight impaired are behind here) and a classified section for used AT.

AFB's Technology Talk message board has a lot about new and old AT.

Not all professional services are alike; they are no better for you than the individuals you deal with. Look elsewhere for what can be done and AT used and to learn what questions should be asked. "One size does not fit all."


Re:Slowly Going Blind. Advice Wanted.



if you are financially able to find a good nursing home or a caregiver........i would like to find a good nurseing home .....however my caregiver does give good care and companionship.....i would appreciate any persons living in a nursing home where low vision indivividuals reside to contact me..kerryhead211@hotmail.com


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