Tag: macular degeneration

Amazing Stories – no longer science fiction!

Karen Mardahl on

The Amazing Stories magazine of the last century was devoted to science fiction stories of all kinds. In other words, stories of the future, and to some, the impossible. Research is making some amazing stories possible and bringing them into the present. We want to present two tales that we consider amazing.

Helping the blind to see?

With some types of blindness, such as macular degeneration and proliferative retinal diseases, a scanning laser ophthalmoscope (SLO) may be the key to a "seeing machine".

A portable device, based on the concept of the SLO, was developed that allows "people with visual impairments to watch videos, access the internet, view photographs, or just see the face of a friend."

This device is the result of the work by Elizabeth Goldring, a senior fellow at MIT's Center for Advanced Visual Studies, and her team. When Goldring lost vision in both her eyes, she went to Schepens Eye Research Institute in Boston where they used an SLO to test her retinas. As reported in Poet, Ophthalmoscope Find Serendipity
By Elizabeth A. Thomson, 3.8.95 Tech Talk, the SLO could bypass the hemorrhages that contributed to her blindness and project images directly onto the retina of the eye. Goldring was able to see the figures projected by the technician.

This is all at the prototype stage right now, but you must start somewhere! Goldring's team aims to reduce the cost of such a device. When an SLO costs USD 100,000, they won't be the top selling item in your local electronics store! For now, the price in the MIT team's portable device is down to USD 500, and they plan to test the machine outside the laboratory soon.

Good luck to the team!

Automatically generating user interfaces: how SUPPLE!

The story of SUPPLE, developed at the University of Washington almost by chance, is definitely an amazing story.

The short cut for people with vision is displayed in the following YouTube video:

More details are available on the SUPPLE project's website.

The first words that come to this writer's mind after reading about SUPPLE are simple "cool" and "wow" – not the most erudite, I know. The problem with poor user interfaces has perplexed many technical communicators over the years – as UUX professionals, information architects, and in many other roles where both design and descriptions (documentation) have been tweaked relentlessly and constantly in an effort to make the user experience somewhat tolerable.

"Normally", users must adapt themselves to software. This usually means that the needs of users with motor or visual disabilities are not covered. It is hard to foresee the needs of all potential users when designing the user interface. Along came SUPPLE and its automatic generation of user interfaces. Results of using SUPPLE show that the performance gap between users with motor impairments and users without motor impairments was closed by 62%!

What next?

Research stories are exciting to read, but they are often still in the test or development stage. Money, as with many things these days, seems to be one of the weakest links in the chain! However, the stories are exciting because they can open new paths of opportunity both for those directly affected and for technical communicators who can be valuable members of the development teams. We hope that more technical communicators are inspired to pursue career opportunities that involve accessibility. Disabilities do not diminish because of a world financial crisis!

Charles Bonnet Syndrome (phantom vision)

Cynthia A Lockley on

Here are two informative articles about phantom vision, which affects between 10 and 40 percent of people with low vision.

The first article comes from an article in the Lighthouse International's Sharing Solutions newsletter, February 2004, on page 5: "I See Purple Flowers Everywhere: The Many Visions of Charles Bonnet Syndrome" (182 Kb .pdf) by Lylas G.Mogk,MD, and Marja Mogk, PhD; with Carol J. Sussman-Skalka,CSW, MBA.

Do you ever see things you know are not there but look real anyway? It's a common side effect among people with vision impairment. While we refer to it as "phantom vision," the technical term is "Charles Bonnet Syndrome." If you've experienced this, rest easy. Your mind is fine. It's your eyes that are playing tricks on you.

What Exactly Is Charles Bonnet Syndrome?

Charles Bonnet, an 18th century Swiss naturalist and philosopher, is credited as the first person to describe the syndrome. Like his grandfather, who had low vision and saw men, women, birds and buildings he knew were not there, Charles experienced similar phantom visions when his own vision deteriorated.

One explanation compares this condition to phantom limb experiences. People who have a limb amputated may still feel their toes or fingers, or may experience itching on an arm that is not there. This happens because the limb's nerves are still active and sending signals to the brain, which the brain interprets as sensations from the missing limb. Similarly, when retinal cells become impaired and are no longer able to receive and relay visual images to the brain, the visual system begins firing off images on its own.

Often, these images are not related at all to a person's life. Sam, who has macular degeneration, said, "I see little monkeys with red hats and blue coats playing in the front yard." Sam had no doubt that the monkeys he saw were not real ones. As a result, he wasn't concerned about his mind. However, he was worried about what others would think, so he kept it to himself…

Lighthouse.org—Home > About Us > Newsletters and Publications > Sharing Solutions > Fall 2004 > Purple Flowers

The article continues on to explain the percentage of people who may be affected by Charles Bonnet Syndrome and that it is not a psychiatric problem. The article describes some of the images seen that patients have reported.

A majority of people do not find their phantom vision disturbing, probably because the images they see are amusing, pleasing or entertaining.…

This article is based on, and includes quotes from, a chapter in Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, written by Lylas G. Mogk, MD, and Marja Mogk, PhD, published by The Ballantine Publishing Group (2003).

This article appeared in Sharing Solutions – Fall 2004 Edition

The second article describing Charles Bonnet Syndrome comes from "Flashes and Paisley Prints" by Kate Chamberlin. Kate’s personal blog documents her "life and times as a writer who happens to be blind". Kate also experienced hallucinations during the 1980s while she was going blind.

For more of Kate's writing, see Kate's Blog at http://katechamberlin.com/.