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"Going To A Low Vision Center -
What You Should Know
and What to Expect"

by: Southwest Low Vision 1-888-534-4321

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For those who are going to a low vision center for the first time, it can be an overwhelming and misunderstood experience for both the patient and the family. This article explores some key points, which may help you in your expectations and in minimizing frustrations before going to a low vision center.

Unlike most eye appointments, a low vision appointment means you as a patient take an active role. That is, the more you can put into it, the more successful and satisfied you will be at the end of your experience.
"What do you mean I have to
put something into it?":
Low Vision services are geared to help persons with vision loss maximize the vision they have now - it usually means not helping you to see better in general - it means helping you function better in your everyday life. For instance, if you were to make a list of all the tasks that frustrate you or that you have given up on, but would like to do again, this would be a great beginning of your "hard work" toward your successful out come. More on this later.

Another way to understand low vision services is to explain what it is not. For example, if you have one eye that has much worse vision than another, low vision services cannot "help the bad eye". Maximizing vision will almost always mean concentrating on the better seeing eye to help you accomplish things. Low Vision is not medical services per se; so going for low vision does not mean you are going to get treatment to "fix" your vision. The low vision specialist will not be doing things for you - they will more accurately describe their role as someone who can work together with you and guide you as you work hard to achieve one goal, then another and another.
Low Vision - A Lifelong Process:
Low Vision therefore is not to be seen as an appointment or two, but a beginning of a rehabilitation process that may continue (with or without professional help) for the rest of your life. As you regain the ability to read, your efforts may continue month after month so as to read faster and faster. Or, maybe reading short materials will be all that can be accomplished at first, increasing to magazines or books. Maybe it will mean starting with large print materials, and later reading normal print sizes.

Perhaps after accomplishing reading goals, you will want to learn about distant devices for watching TV, going to plays or seeing a sporting event. Many people with low vision go far beyond what they ever dreamed could be accomplished, such as writing a book or using the computer. But, it all happens in steps, and you need the patience and the right expectations to succeed.

As stated earlier, a good starting point is to develop a list of specific tasks that you want to accomplish. Think of all the things you do in the course of a week - like reading the mail, reading magazines or books, adjusting the thermostat, writing checks and letters, personal grooming, cooking and so on. Work on the list for a week or so, so as to put down an entire range of tasks and not to forget any. (Again, many will not be able to be accomplished quickly, but you need to remember what they are.)

Next, try to re-write the list in order of importance to you. This prioritizing can help you to be clear and to the point when you go for low vision service. In fact, if you have samples of reading materials such as a Bible, favorite magazine or work papers, bring them along to your low vision appointment. If you like sewing or crafts, this is also a good thing to bring along so that you can see what works best for you regardless of the task.

There will almost always be a lot of new information discussed during a low vision appointment, so you should consider bringing a small tape recorder. It is also advisable to have an interested family member or friend attend with you, so you can later discuss the points brought up during your appointment. Do not, however, depend solely on the family member or friend to help you - this is YOUR recovery process. YOU will be slowly recovering the things you've lost and you want to take ownership of the process. When you do, you will also feel great at the end knowing it was difficult, but YOU DID IT!!

Difficult - did I say difficult? Yes, I think learning to read a different way or learning to use any new device can be very difficult and taxing. It may be the most difficult thing you have ever done!! Let's just say it will not be easy, so you must be prepared to take it slow, take it in bite size pieces and don't over do it. You should expect it to be hard, and know this before attempting to go for an appointment. The idea that someone will give you glasses or a lens and you will begin to see and read again is a false expectation. You will be setting yourself up for disappointment. Just as a person with a hip or knee replacement does not go out dancing after their medical treatment - a person with vision deterioration also does not go out and read immediately after medical treatment. It takes time; it is a process (a rehabilitation process) yet many do not think of vision help as a slow, hard process. All our lives we went to the eye doctor and got glasses or contact lenses and walked away seeing fine. This old expectation is hard to break and we must realize our eyes have some permanent damage and we will have to develop new strategies to see.

Many people, however, do see some immediate gains during their first low vision appointment. Family members are often times very encouraged by how their family member can read. With the help of a low vision professional, the person with macular degeneration, or another eye condition, is able to spot tiny print or read a short amount of material from the newspaper during their appointment. Then, after returning home, the person realizes that what was accomplished for a short duration cannot be sustained at home. This realization can be discouraging, and some want to give up. They say, " If this is what I have to do in order to read, it's not worth it!"

This back and forth response is very normal. That is, in a rehabilitation process, a person will always show gains, followed by a set back. This type of progress, often called two steps forward and one back, can take plenty of energy. Family members and professionals can be a big help during this time when support and encouragement are needed. I have had many tell me, "If I didn't have much patience before, this is truly forcing me to get some!" This is true - that overcoming vision loss can be very slow. I often use the expression, it's not low vision, it's slow vision! Everything takes twice as long to accomplish as before. So, my advice is to not just think of this step-by-step process as regaining vision, think of it as also building your character!

Also, be kind to yourself. Many people push themselves too hard and cause irritation and frustration to themselves and to their eyes. Others also say negative things to themselves if they feel they are not progressing as they should. It is hard enough losing vision, negative only messages compound the problem. Give yourself encouragement instead.
Don't be afraid to try new things.
If one or two or three low vision devices have been recommended for you, and some are not working for you, feel free to go back and try other options. Do not stick a device in the drawer and forget about it - give the low vision center a second or third chance to make it right for you. If not, you are only making it harder on you. Keep an open mind. Learn about the entire range of devices open to all. There are also new low vision products being developed all the time, so try to learn what new devices can help you.

There are a wide array of low vision devices on the market, from simple magnifiers to reading glasses and CCTV video magnifiers. Do not rule out any device at first - but give yourself the opportunity to try things. Some centers loan devices; other centers have clear return policies that give you a chance to learn how a particular device can work for you in your home.

If an optical magnifier is not working, try a CCTV video magnifier. These reading machines are still one of the most popular items around the world in helping persons with moderate or severe Macular Degeneration read and write independently.

Finally, do not be surprised when depression or anger returns. This is normal. Many people get discouraged thinking they are "over" this loss and then all the strong emotions return. Some people do take time out from their learning to read again to grieve the loss of sight. This loss or grieving period is different for all, but should be given its proper place in one's life. For some, the loss of vision also triggers other memories and losses. This too is normal.

To try to hurry the process along may have other consequences such as physical disease, alienation from others or poor coping mechanisms such as excessive drinking to name one.

Giving yourself a chance to grieve is actually a kind way to help yourself. After sorrow subsides, there will be plenty of time to learn new things. Regaining independence will come - but the timing is not the same for everyone. The best way for others may not be the best way for you. But, you must try to communicate clearly and often on what you need. This is your responsibility. Then, others around you will know how you feel and what is important for you as you go through this process. They cannot guess. You must try and be clear. Ask for what you need. Even though others may not seem to understand, try and put it into words for them. In the long run, you will then feel more in control of your situation and less of that "out of control" feeling will be evident. You will be in charge of your recovery - you will look back and feel good knowing you communicated with your head held high! This will bring a boost in self-esteem and help friends and family to best help you!

Also, don't sell yourself short. Many persons with Macular Degeneration have gone on to accomplish far beyond what they ever thought they could! Slowly over time, try new and different things. Push yourself to go beyond what you thought you could accomplish. Try new things - with each new trial you may need to return to a low vision center for guidance. Together with you, they will help you to learn that living with vision loss can be a rewarding and rich experience. Many have gone on to start a self-help group to guide others - no matter what you decide, you will be the beneficiary. I know you can do it!!

Low Vision Test Card

In order to help you select the proper strength magnifier, you may print out the
Low Vision Test Card.

Read down as far as you are comfortably able to, the corresponding line to the right indicates the approximate magnification strength needed.

 

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520-297-0027
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