My Vision Problem

What is this about?

This is about my vision problem. There are plenty of web sites where you can learn about blindness. I just want to share real-life, personal experiences. Maybe it will help someone with similar problems.

I am definitely not an expert on the subject. I just know what I have been through and experienced. I am fairly independent and pragmatic. Why get depressed or mope around? Do something. Laugh!

Everyone's vision problem is unique. I guess that is the main point I'd like to share with someone new to low vision or blindness. Don't expect to have the exact same symptoms and problems as someone else with the same disease.

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Define blindness, legal blindness and low vision.

Everyone understands blindness but many people don't know about being legally blind or having low vision. A person is legally blind if their vision is worse than 20/200 with correction or if they have less than a 20 degree visual field.

20/200 means a person has to be 20 feet from an object that a normal person can see at 200 feet. The normal visual field is 180 degrees. (My visual field is less than two degrees.)

Low vision usually applies to those who are legally blind. But sometimes it describes people with limited vision who are not legally blind. There are low vision clinics that can assist people with partial sight.

There are many helpful devices for people with low vision. One source: MaxiAids.com

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What is Retinitis Pigmentosa (RP)?

My eye disease is RP. RP is a genetic, degenerative retinal disease. It destroys the rods and cones in the retina. Typically, it destroys the rods first which results in night blindness. Later the cones begin to go and central vision is lost. The reverse can also happen but it is rare.

People often describe RP patients as seeing a large field of darkness with a dot of light or vision in the center. It is not like that for me.

My entire visual field is the narrow vision I have. There is no darkness around the edges. So I guess it is like looking at a television screen while zooming in with a camera. As you zoom, the new view fills up the screen.

As a result of a very narrow visual field, I have to scan around a lot to see anything. That assumes the light is okay to see at all. I see best on overcast days. Too much sun and everything is white, like a thick fog. Too little light and everything is dark.

Many people in the advanced stages of RP can see better with "blue blocker" sunglasses. These filter out the blue spectrum. They don't know why this works, they just discovered it empirically.

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Early Years of problems.

My vision loss occurred very slowly. So slowly that I did not realize what was happening.

I began to have problems at night when I was a teenager. It got worse in my late 20s. However, no eye doctors diagnosed the problem.

I was in the Air Force from age 20 to 24, returned to college from 24 to 27 and worked as a field engineer from 28 to 32. During that period I went to at least five ophthalmologists yet still was not diagnosed.

In 1981, at 33 years of age, I finally found out what was wrong. I had RP and less than a ten degree visual field. There was a good chance that I was legally blind as far back as the Air Force. I was relieved to find out what disease I had. It explained why I was having the problems I had and I learned how to work within my limits.

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Doctors

Ophthalmologists and optometrists are better at diagnosing and treating low vision and blindness. Some are still in the dark ages and don't understand. If your doctor doesn't, get a different one. There are many low vision specialists today.

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What I see or don't.

People easily understand total blindness but get very confused with people legally blind or having low vision. For instance, I have a tiny bit of vision but you can assume that under the best conditions, I only see less than two percent of what is going on around me. Another way to state it is that I miss seeing 98 percent of what is there.

Most people have no experience with RP or low vision and assume if you can see, you see like they do. That is why I always wear "blue blocker" sunglasses. They not only help a little in seeing under varying light conditions, but hide my eyes from where I am trying to see. If people can see your eye pointed at them, they assume you see them. If I move my eyes or head a fraction of a degree away from someone, I don't see them at all .

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Work History after diagnosis.

As I stated earlier, I was diagnosed with RP in 1981. I was 33 years old and started having vision problems in my late teens. The decline of vision in RP patients varies greatly. Some lose vision at a very early age and some see something for their entire life.

After I was diagnosed, I changed the company I worked for and got married. I moved to California and worked in numerous positions with Chevron Information Technology Company. They were great about accommodating me by moving me into jobs I could perform and keeping me employed.

I worked until I was 52 years old. In January of 2000, I just couldn't keep up with my work any longer. I had paid for long term disability all my working career. It paid off having this insurance.

When I started applying for long term disability, the insurance company mandated that I had to apply for Social Security Disability. They get to reduce what they pay by the Social Security amount. The lady reviewing my paperwork at the Social Security office looked over everything and said,"You would have been eligible for SS disability in 1981". I'm glad I didn't know about this, I had a productive career for nearly twenty years after diagnosis.

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