A NEED FOR A CONTINUUM OF CARE FOR
PEOPLE WITH LOW VISION AND BLINDNESS

By: William F. Paul

I was invited to be a dinner speaker at a small gathering of the Academy of Ophthalmologists and I began my presentation with a typical, yet sad story of a young woman who had been born partially deaf and was developing a degenerative eye disease. She sought the best care she could find, and after she was diagnosed with juvenile macular degeneration, her ophthalmologist informed her that there was nothing more he could do for her. She is a teacher of children with special needs and feared that she might lose her job and, of course, her lifestyle.  She was devastated and felt a loss of hope.

I told the doctors at this meeting that there would have been another, more hopeful outcome if the doctors she saw were aware of the new technology that could help this young lady stay employed and lead a more productive lifestyle. I went on to describe in some detail what this technology consisted of and the need for rehabilitation in the field of ophthalmology.

I got a good reception from the ophthalmologists and they encouraged me to spread the word. With the help of Dr. Emily Chew of the National Institutes of Health and the National Eye Institute, my remarks were published as an editorial in the January 1999 issue of the American Journal of Ophthalmology (AJO).

A few months ago, I was astonished to receive a call from a Catholic nun who is a professor of Shakespearean studies at Notre Dame University. She is suffering from macular degeneration and is struggling to remain an effective teacher in such a sight demanding profession. What startled me was her ophthalmologist’s response. Instead of saying he could no longer help her; he gave her a copy of my paper with the encouragement of a brighter future.

That’s why I am here. My vision, my dream, is that through a program of awareness and study, ophthalmologists will someday provide a continuum of care that includes rehabilitation.

Twelve years ago, I had lost central vision of my dominate eye and I was left to read and drive using my other, amblyopic or lazy eye. About a year later, my remaining eye developed the same degeneration. I remember sitting in a room thinking that my lifestyle would be radically changed. I was a senior executive of a Fortune 500 company and I needed my eyesight to read, watch screen presentations, and recognize people. I can tell you how bad the recognition problem was: I was in a receiving line and when I shook the hand of a good-looking young man, I said, “Hi, I’m Bill Paul.” He said, “I know Dad, I’m your son.”

I was fortunate. I found myself listening one morning to a public radio program featuring a blind editor – yes, I said blind editor, Doug Wakefield. He was using a computer with unique software that read what was on the computer screen. He was using the screen reading to help him edit, access the internet, and order products. I was stunned! I took up the challenge to seek out this technology and to learn how to type and use the computer as well. With a lot of help, I got the computer assistive technology I needed to continue to be productive. With the help of this and other technology, I was even promoted to become an executive vice president of the corporation. My associates knew I was partially blind but this was transparent in my work, thanks to the technology I use.

Let me explain what I use. It starts with good lighting. I use track lighting over my work area, with a rheostat, which varies the light intensity, depending on the condition of my eyes. I also use a goose-neck lamp placed between my eyes and the paper, or a halogen lamp placed well above my head to reduce glare. I also carry what’s called a “Mag” lite, which can be purchased in any hardware store.

I use a variety of magnifiers. I use a 4X to navigate around my desk in order to find things and to see my notes. This level of magnification is also good for reading headlines and looking at pictures. I use 6X and 8X magnifiers to read fine print.

My eyes are somewhat light sensitive, but I do use these magnifiers with built-in lights. You can turn them on or off, as needed. I use Eschenbach products made in Germany because I have found them to have the lease amount of distortion.

For reading, I have a unique pair of glasses that Dr. Alibhai in Bethesda, Maryland, helped me with. The central vision of the originally strong eye is virtually nonexistent, but I use my peripheral vision in that eye to ambulate, play golf, and do just about everything thing but read. My lens for that eye is just a vision lens optimized for my peripheral vision. My other, amblyopic, eye is used for reading because I still have a slit of vision left from my neovascular condition.

With this situation, instead of holding magnifiers in one hand and the paper in the other, we used what are called “uni lenses” to put this capability into my reading lens. Uni Lens (North Largo, FL, 1-800-446-2020) manufactures small (approximately one inch in diameter) magnifiers that can be bonded to lenses. We bonded a 4X (16 diopter) unilens to the upper portion of the lens of my amblyopic eye (left lens). We then bonded an 8X (32 diopter) unilens to the same lens, but mounted just below the 4X unilens. This gives me a trifocal for one eye. I have a distance lens, a 4X lens, and an 8X power lens, all on the left eye lens of my glasses. Now I can read the paper with both hands holding the newspaper. Using unilenses mounted to the left lens of my reading glasses, I close my other eye when reading to avoid interference. This approach is far more preferable than some of the high magnification lenses in glasses because it allows distance, headlines, and fine print to be seen with one lens. While on the subject, I think that blackening the lens because of interference should not be used in most cases. Let the patient train themselves to close the interfering eye. Also, the chart that defines the level of vision is not appropriate for those of us with neovascular distortion. The letters in the middle of a line get distorted and if there were more separation of the letters, the doctor would be in a better position to judge improvement or degradations.

Using magnifiers is difficult for some, and having the reading materials held close takes getting used to. There are some with distortion so severe that magnifiers simply don’t work. I would let a patient borrow 4X and 6X magnifiers and ask them to use them for a few weeks. If this does not work, than Unilenses will not work.

One of the most important technologies I us is called Zoom Text. It's software that enlarges print on computer screens as if looking at the screen with a magnifier, and the magnification is variable. This software also reads what is on the screen. I traverse around the screen using the enlarger, but I process the information I need using the screen reader. I read my Wall Street Journal, Business Week, and my mail by using this technology. I also use it for flight reservations, yellow pages, and my rolodex. Remember the blind editor using this type of technology? Zoom Text can be contacted at 802-362-3612.

I also use an Optelec (Waterford, MA), CCTV (closed circuit television) to read some materials, and Beecher binoculars (Beecher Research Company, Schaumburg, IL) to watch television and see business presentations. I would also recommend using Descriptive Video Systems, developed by WGBH of Boston and hopefully available in your region. DVS uses one channel for voice overlays when watching TV, which tells you what’s going on. The National Federation for the Blind also has a program that allows you to tune into a radio station to listen to the newspapers and other material.

I am a voracious reader of unabridged books on tape, provided by the National Library Services for the Blind. They provide free tapes and a four track tape recorder. For listening, I use a Sony Talkman adapted to use a four tracks and at a lower speed.

If more information is needed, the Low Vision Information Center can be contacted (7701 Woodmont Ave., Bethesda, MD; 301-951-4444.) An excellent source of products is Vision Dynamics, a store founded and operated by a young man with macular degeneration, Charlie Collins. His store is located in Cheshire, Connecticut (203-271-1944).* He can send whatever is needed. There are national organizations that can be quite helpful, including the American Council for the Blind in Washington, D.C., the National Foundation for the Blind in Baltimore, the American Foundation for the Blind in New York, Concerned Council of Citizens with Low Vision International, which can be reached at the American Council of the Blind, Prevent Blindness America in Shaumburg, Illinois, and the Lighthouse and Lions low vision centers, which are regionally located.

What I use and how I use the technology in my toolbox is uniquely suited for me. It doesn’t necessarily work for everyone. However, given good effort, some of this technology should be useful.  What is needed is for someone to look at each patient’s specific situation and help him or her try what is available.

To take the needed steps toward achieving this objective, I would like to cover the roles of doctors, patients, and the federal government.

DOCTORS

Doctors play a most important role because they are the first to see the degenerative condition and can, if knowledgeable, begin to direct the patient to a program of gradual rehabilitation, hopefully while the patient still has some functional eyesight. Furthermore, we live in the land of the sighted, and most probably, the doctor is the only one who would have the remotest knowledge of where to go for help.

I believe that, for some reasons, ophthalmologists generally do not think of rehabilitation when it comes to degenerative eye conditions. These reasons include a lack of awareness that this kind of help is available, an historical sense that responsibility ends after efforts to save sight, the reticence of patients to respond to unique approaches, and the lack of payment for the time it takes to potentially rehabilitate a patient. Yet there are precedents in other fields of medicine. For example, a doctor who amputates a limb would never leave his patient without sending him to get a prosthesis and training. The surgeon probably knows little about the technology of bionic limbs and frankly doesn’t need to. The doctor simply provides a continuum of care, handling off to those who can follow up. Medical centers are adopting the concept of “continuum of care” in the cardiovascular field by providing services from wellness through to rehabilitation and follow up.

There is an ever increasing need for the integration of ophthalmologists, low vision optometrists, low vision centers, and assistive technology specialists. We need networks to provide a continuum of care. The patient needs a one-stop shop that integrates the unique care of each person. In my judgment, that one-stop shop should be in the ophthalmologist’s office. But a doctor cannot and should not be expected to know what’s going on in the field of rehabilitation. Furthermore, there isn’t enough time or money to spend on what is needed for rehabilitation. In my opinion, what the doctor needs is an awareness that help can be provided and a knowledge of where in the doctor’s region that help can be found. In short, ophthalmologists need a local network of support.

PATIENTS

In some ways, the attitude of patients may end up being the hardest part of this challenge. To help overcome many of the obstacles facing people with low vision and blindness, one requires a can-do attitude and a willingness to stick with new things that may help.

I believe there are three factors to consider:

  1. Focus on your low vision and blindness as a challenge rather than a problem.

  2. You can do much, if not virtually all, of the things you did before; you just have to do them differently.

  3. Our effectiveness is the integration of all our attributes, brains, courage, knowledge, and experience. Eyesight is only one factor. If by using assistive technology, we can improve our functional vision from, for example, 3 on a scale of 10, to 6 or 7, we could still integrate out to a 9 in effectiveness.

My organic vision is pretty poor, but my functional vision using computer assistive technology and unique uni lens glasses, is almost 20/30. And oh, by the way, I’m as effective now as I have ever been.

I would urge patients to be patient and take a 4X, 6X, and even 8X magnifier home and get used to how close to hold it to the newspaper. It takes time, but it can be learned. As you well know, patients want instant solutions to restore their eyesight. Learning to use whatever the doctor thinks will work cannot be accomplished in the doctor’s office. An amputee has to learn how to walk, and it can’t be done in ten minutes in a doctor’s office.

Patients will often say that whatever is recommended costs too much. I think that doctors need to be somewhat forceful and suggest that we are talking about their functional lives – perhaps skipping a vacation or something new or getting a modest loan is what should be done to have a more normal life style. In the broad scheme of things, it’s not expensive. In this age of insurance, people are unwilling to spend their own money. It’s hard to change this philosophy, but in the end, there may be some who get the message.

GOVERNMENT

A law was passed last year as part of the Rehabilitation Act of 1998, called section 508. It establishes that the government assures, through its procurement regulations, that electronics and information technology be accessible to all government employees with disabilities.

Section 508 goes on to point out that this law also applies to the disabled public who are accessing government information, such as IRS forms. The United States Access Board, of which I am a member, will put the law into regulations for applications by early next year.

This law and its regulations will be as important to those of us attempting to access the world of electronics and information technology as access to buildings was for those in wheel chairs.

Finally, I would urge that a federally funded program begin to inform ophthalmologist of the need for rehabilitation and the existence of the technology I spoke of in this paper. I would also urge that a program be undertaken to research what is meant by “rehabilitation,” including the description of the elements that go into it and some potential concepts of an integrated network of care. In essence, we need to define what is meant by a “continuum of care” in the field of low vision and blindness. Furthermore, perhaps some models can be set up around the country consisting of networks of doctors, technologists, and rehabilitation specialists, put in place to help everyone who needs and wants help.

As you can see, I am passionate and committed to my dream of having the proper care for everyone who needs and wants to be as effective as they can be. I am prepared to support the efforts I recommend.

In the future, let’s not repeat the sad story of the young woman who developed macular degeneration and was told by her doctor that there was nothing more that could be done. Let us commit ourselves to this objective.

Thank you.

The author has no financial interest or business relationship with any of the products and services mentioned in this presentation.

By: William F. Paul 10:3-4 (August 2004)