Going blind-lifestyle change for deaf...

Annie555J5

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If a deaf person receives news that one is going blind due to diabetes or other conditions, how would one adapt to the new lifestyle or prepare for it? The reason why I'm asking is that I'm deaf and have a condition that causes visual problems and may worsen over the months or years...

Any input? I realize that not many deaf/blind people are on this forum, but am sure many of you are friends with deaf/blind people.

Thanks, Annie
 
Hi. If it were me, I would get a chimp and train him/her while I still have my sight. :)
 
very interesting reply about the chimp.... Guess no one takes this seriously? It can happen to anyone that one could be blinded by chemicals or a hit on the head or getting old, causing vision problems...
 
Sure anyone can be blinded by chemicals, etc. But, in your situation I would try to find what is the cause, and try to prevent it from getting worse. Easy said than done though.
 
If you are not too shy i would ask hearagain she is deafblind and im sure would be glad to answer your questions
 
very interesting reply about the chimp.... Guess no one takes this seriously? It can happen to anyone that one could be blinded by chemicals or a hit on the head or getting old, causing vision problems...

I so did not post in jest. I thought about it and that was my response. In case you didn't know Chimpanses are very intellegent and do just about everything. Sorry you did not take me seriously.
 
Sure, that'll be cool. How shall we connect? ~Annie

I dont think u can send a private message until u reach 100 posts..so maybe go to her page and send her a comment on her profile page by searching hearagain. I also sent her a link to ur thread so that she can go and read it :)
 
Actually, its not THAT unusual. There's a signifcent deaf blind population out there, due to that syndrome that causes deaf-blindness.
 
Yes, Usher Syndrome. It's so common that when I was telling my friend about my other friend who is deaf-blind, she asked if he had Ushers.l
 
Annie,

I just saw your post and would be happy to answer any questions you have about deafblindness. Just let me know here or send me a PM. :)
 
Usher syndrome? I knew some people with that at RIT.

Ones with Congenital Rubella syndrome can possibly be deaf/blind, but mostly just deaf cases. In addition Rubella is considered irradicated from United states with <10 reported cases anually by CDC. Although many contries do not mandate MMR or just a Rubella vaccination so this is still current issue in many countries. Im sure individuals here are deaf who had CRS born in 50's and 60's before vaccine was approved by fda in mid 1960's (United States) I do not have accurate epidemiology reports with other contries. I know 30 yrs ago UK was just administering it to prepubesant females and those immediately post partum. Anyway, I'm drifting off topic and getting on tangent. so Im finished
 
Safety Glasses

After this, plug ears and use microphone scope for MOUTH with speaker system ONLY or earphones.
 
I am also deafblind. It's best to get someone to help you with Rehabilitation. Learn things like Braille, Long cane and blindness skills.
 
Vision loss can be scary, but trust me, you live through and with it. As someone said, rehab can be a great starting point.

I'll try to sum up what you're going to need.

Communication:

Do you sign? If no, now is the time to start. If you do sign, work on your tactile awareness of signs. Pop on a blindfold and sign with a friend.

The other major aspect of your communication is going to be braille, which I will probably mention again: suffice to say, it's an essential skill to have. Most of us use devices like a pacmate (an accessible pocket pc for the blind/deafblind with a brailled display) connected to a standard visual display to have tty-style conversations.

Do you use or benefit from hearing aids? As a deafblind person, it's essential that you make the most of your residual hearing- not to the extent of stress, though!

Access:

How do you plan on computing? You have two options, which are A: screen magnification and B: braille. Programs like JAWS and Zoomtext are options here, the second requiring a very expensive braille display you should try to get an agency to buy for you.

Travel:

Travel is absolutely essential. Learn how to use a cane! Getting good cane skills, and especially, using a LONG cane (I use nfb canes and would NEVER suggest ambutech style canes- they're heavy, don't give much tactile feedback, ect)

Crossing streets can be done through three methods if deafblind without useful vision and sight:

A: use a sighted person. Walk up and ask them to tell you when it's safe to cross, or carry a card conveying as much. This isn't a method I suggest, because in general, it makes people grab you, and sometimes in all their sighted ignorance, throw you in traffic at the wrong signal by accident.

B: Use a miniguide. This is a device that vibrates when aimed at objects. Steady vibration = non moving traffic. On/off vibration: moving traffic.

C: Use a well-trained guide dog. I know one deafblind lady who is able to cross streets alone using this method.

If you have some hearing or vision, enough to see cars from a SAFE distance, or hear traffic RELIABLY (cross unfamiliar streets with a friend to test this out) you also have the options of:

A: listen for traffic patterns
B: watch cars moving
C: use a bioptic telescope aimed at the "walk" or "don't walk"
D: If you have enough vision to see close-by people but not moving cars, and you're at a busy intersection, simply watch when the LARGEST group of people begins moving.

Reading things:

Braille, braille, braille! Learn it, love it. It is essential for blind people, but it is a LIFELINE for deafblind people. Braille is the ONLY method by which people who are blind and unable to read print reliably can remain literate... do you wish to be illiterate?

Magnifiers, closed circuit televisions:

Hand-held or stand magnifiers can be good for glancing at things, but a closed-circuit television, when some of your vision is still on the plate, is an important option.

There are two forms of CCTVs, which are tabletop and portable.

A tabletop CCTV stays at home, school, work, ect. It's used to read longer documents, mail, book, look at pictures, ect.

A portable CCTV can stay in your pocket or purse. You can use this to read menus, school assignments, a magazine while you're out, ect.

Since you mention some diabetes things, I'll give you some diabetes specific tips.

-Never, ever test on any fingers save for your thumb and pinky. Tactile sensitivity is essential for braille reading and testing on those other fingers will form or further the thickness of calluses and make it more difficult- that said, keep testing often.

To use your meter, you have four options.

-Simply, see the screen. If you can't read the display (they're quite large, usually) stack a cctv on top of it- which makes owning a portable one all the more useful.
-Buy a prodigy voice meter, and if you still have hearing, use this. Be sure to test around a friend and make sure you're hearing the right things, first!
-Use a visual meter and ask a sighted person to tell you your readings (not ideal)
-Use a visual meter and download the results daily to your computer. (not ideal when you're testing before meals or if you think you're hypo)

To dose your insulin, you can

-Use a count-a-dose. This is a small unit that produces a tactile 'click' every time you withdraw a unit.
-Use a tactile-friendly insulin pen.

Never use a magnifier, because the distortion can lead to messing up your doses.

To carb count, you can:

-If you know the name of your food but can't read the label, hop online and look it up! every imaginable food is on calorieking.

--

Those are just a handful of ideas of the things you're going to need to change- others, like labeling things around the house, learning to identify clothing, cooking, ect, I can elaborate on if you wish.
 
Thanks so much!

Wow, great help!!! I appreciate all your replies. I'll make note of this and keep it handy. ~Annie
 
For around the house - Ameriphone ( now under Clarity) has both visual signallers which flash lights etc, and a portable tactile signaller which you carry with you that vibrates in a pattern to let you know what device is being triggered.
 
In regards to training, you might also consider print on palm (tracing block letters into the palm of one's hand) as a means of communication. A Braille/print communication card may also be helpful. (This is a card that contains both the Braille and raised print alphabet. A sighted-hearing individual places the deafblind person's finger on each letter to spell out words and sentences. A similar "do it yourself" card can be made with wood and Dymo tape.) Both of the above methods will help you communicate with those who cannot sign.

Ask VR to pay for either a Screen Braille Communicator (also known as an SBC) or Krown Braille TTY.

The SBC is a communication device with a QWERTY keyboard on one side and a Braille keyboard on the other. There is also a Braille display and print LCD screen for reading responses.

The Krown Braille TTY contains a standard TTY along with a Braille display for reading messages.

There is also a device called the Tellatouch which contains a QWERTY keyboard on one side and a single Braille cell display on the other. Each time a key is depressed on the QWERTY keyboard, it appears on the single cell Braille display. This is the most portable out of all the communication devices I've mentioned, but it does not contain a print display.

Finally, if you don't want or can't go to an NFB Center or HKNC (Helen Keller National Center), you might want to consider the Center for Deaf-Blind Persons in Milwaukee, Wisconsin.
 
It's worth noting that Usher Syndrome does exactly what the OP asked about. Although there are people who become deaf and blind at the same time, Usher's in particular makes a person deaf as a young child (or from birth), and then takes away their sight later in life.

And of course, the word "deafblind" has a variety of meanings just like "deaf" does - people can have different levels of hearing, and different levels of sight. Deafblind doesn't necessarily mean "can't hear ANYTHING, can't see ANYTHING" - though it does for some people! :)

We've come so far from the Laura Bridgman days! :)
 
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