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Lightening blindness's burden

With only a handful of doctors trained in low-vision rehabilitation, many Canadians go without advanced visuals aids that could lessen the burden of their disability

From Wednesday's Globe and Mail

Kenneth Singer looks back almost wistfully at the time when he was 30 and lost the central vision in one eye.

Back then, he still had one eye that worked well, and could do normal activities such as driving or reading the newspaper.

Now, the 57-year-old Toronto lawyer barely has any vision at all, and depends on specialized equipment to help him read documents at work and do activities with his family.

"Much of my job is about reading, which is difficult when you're losing your vision," Mr. Singer said.

For a while, he was afraid for his career. His assistant used the photocopier to print out documents in extra-large print.

Now, he has other technology that helps. One is a desktop-sized closed-circuit television, which consists of a video camera and a computer monitor.

"It's similar to the way the old overhead projectors work. You put the document you need to read on a tray below the camera; then the image is beamed up to a screen and is magnified," he said.

The words he reads are one inch high.

He was diagnosed with Fuchs' Spot, a degenerative condition that affects the macula - the part of the retina responsible for the most detailed, central part of vision. Fuchs' Spot is not common, but has overlapping features with a much more common condition, age-related macular degeneration, which also leads to a loss of central vision. AMD is one of Canada's leading causes of blindness.

Mr. Singer was relatively lucky in that he was eventually referred to one of Canada's few specialists in low-vision rehabilitation, Samuel Markowitz, director of the LVR program at the University of Toronto. There are only a handful of people in Canada with Dr. Markowitz's level of training. And that means many Canadians go without advanced visuals aids that could lessen the burden of their disability.

"The idea behind LVR is to help patients, through the use of personalized devices and training, to use what little vision they have remaining as effectively as possible," Dr. Markowitz said. It is intended for people who no longer benefit from standard therapies such as strong reading glasses, and who may have been told by their eye-care specialists that they can no longer help.

After going to Dr. Markowitz for a detailed assessment, Mr. Singer was prescribed two devices, a two-inch-long telescope that attaches to his glasses, and a pair of glasses with prismatic lenses.

The telescope is attached to a string Mr. Singer wears around his neck. He places it in front of his better eye like a small spyglass when he needs to see anything at a distance, such as a street sign. The telescope can also be clipped to the front of the frame of his glasses when he wants to use it for longer periods , such as when he goes to see his son play in curling matches.

The prism glasses look like regular glasses, but work by redirecting light to non-diseased parts of the retina. They allow him to see more details in his surroundings, making it easier for him to walk from place to place without bumping into things.

Before the prism glasses, Mr. Singer says, he felt clumsy. "I couldn't see if there was a glass of water on the kitchen table, and would knock it over," he said. The clear glass and water were virtually invisible. Now he can see them.

Low-vision rehabilitation is a multidisciplinary field that includes ophthalmologists, optometrists, opticians, occupational therapists and others.

"If there is some residual vision, there might be a way to tap into that, and let people regain some level of visual function," Dr. Markowitz said. "It won't bring lost vision back, but it could mean people with low vision can keep their job longer, or maintain independence, especially if they have degenerative eye disease."

But getting LVR services is a challenge, said Olga Overbury, an associate professor at the University of Montreal's School of Optometry. There is a lack of knowledge among both patients and eye-care professionals that such services exist, and a reluctance among some eye-care providers to refer people, Dr. Overbury said. There are also geographic and financial barriers to accessing services, and not enough services, she said.

Indeed, University of Ottawa researchers found that there is inconsistency between the provinces in how poor vision needs to be a patient will be referred to LVR services, and in which services and devices are insured.

While there are various LVR support services around, fewer than 10 ophthalmologists and no more than two or three dozen optometrists have in-depth training and practice LVR in Canada, Dr. Overbury said.

Yet the number of Canadians with degenerative eye diseases is growing at staggering rates, showing a huge need for services. A 2001 Statistics Canada study found that of 300,000 Canadian seniors with vision disabilities, only 24,123 were getting help from the Canadian National Institute for the Blind. Yet getting to services early is what really helps people continue to live normal lives, Dr. Overbury said.

As with other types of rehabilitation, people must work at it. There is a steep learning curve that comes along with some of the devices, and getting used to doing things in new ways. "Learning how to use devices is part of the rehabilitation process," Dr. Overbury said.

There are various places people can go to for help, including private LVR clinics run by ophthalmologists such as Dr. Markowitz's, optometrists who are specialized in LVR, the CNIB and similar organizations. Some hospitals have LVR clinics.

Unfortunately, many people go to their ophthalmologist, are told that nothing more can be done, and are not told about LVR. In some cases, eye doctors simply won't take the time to talk to patients about the services, Dr. Overbury said.

But she added that often its patients themselves who create barriers to getting help. "People are afraid of blindness and many feel uncomfortable when you send them to some place with the word 'blind' in the name," she said.

"People need to be pro-active and ask their optometrist, ophthalmologist, or contact their local CNIB to find out who offers LVR services locally," Dr. Overbury said. The time to ask is "when you can't do something you want to do because of vision loss" and your current eye-care provider has nothing more to offer. It's not the end of the road.

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