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Eyes Only: Our Quarterly Newsletter
The association publishes a quarterly newsletter that updates members on medical advances in the field of macular diseases, advises on newest developments in low-vision aids as well as counsels those afflicted with macular diseases.
Autumn
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2002 Newsletter
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2002 Newsletter
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2001 Newsletter
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Winter 2001 Newsletter
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"Growing old is a bad habit that a busy man has no time to form."
-- Historian and novelist Andre Maurois
• This past summer, Lucentis (ranibizumab), made by Genentech, was approved by the U.S. Food and Drug Administration (FDA) to treat neovascular, or wet, age- related macular degeneration (AMD). This followed the December 2004 approval of Macugen and, like Macugen, Lucentis is injected by a retina specialist directly into the eye. Lucentis appeared to stop disease progression in as many as 90% of trial patients, even up to two years. In fact, most patients in the study regained small amounts of vision, and 30-40% had significant improvement.
• Bill G. Chapman's 2001 book is: Coping with Vision Loss: Maximizing What You Can See and Do. Hunter House, Alameda, Calif. (Mr. Chapman has had a severe case of dry macular degeneration for more than 40 years. He has written this book, in his words, to help a partially sighted person "use his or her remaining vision to function as a sighted person.") Book #RC 55481, National Library Service Talking Books Program.
• Henry A. Grunwald's 1999 book is: Twilight: Losing Sight, Gaining Insight. Knopf, New York. (Former editor-in-chief of Time, Inc. publications and a past U.S. Ambassador to Austria, Mr. Grunwald describes the adjustments he had to make to remain as active as possible in his profession and lifestyle. He talks of how other people deal with macular degeneration.) Book #RC 49236, National Library Service Talking Books Program.
• Mogk, Lylas G., M.D. and Mogk, Marja (2003). Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight (revised and updated). Ballantine Books, New York.
• Neer, Frances Lief (1994). Dancing in the Dark: A Guide to Living with Blindness and Visual Impairment. Wildstar Publishing.
• Ringgold, Nicolette Pernot (1991). Out of the Corner of My Eye: Living with Vision Loss in Later Life. AFB Press, New York (large print).
• Solomon, Yale, M.D. and Solomon, Jonathan D. (contributor) (2000). Overcoming Macular Degeneration: A Guide to Seeing Beyond the Clouds. Harper Paperbacks, New York..
• Various publications from the National eye Institute are free and can be ordered from their website at www.nei.nih.gov. For mail or phone contact: National Eye Institute Information Office 31 Center Drive MSC 2510 Bethesda MD 20892-2510 1-301-496-5248
"My contemplations are of time that has transfigured me
And yet the beauties that I loved
Are in my memory.
I spit into the face of time
That has transfigured me."
-- William Butler Yeats
• U.S. Library of Congress Service for the Blind and Physically Handicapped is a free lending library of more than 50,000 recorded books - i.e., talking books. Listening to the cassettes requires non-standard players, which are also lent at no charge. Besides books on tape, the service offers musical scores in Braille and magazines.
• Robert Johnson wrote an article on Closed Circuit TV: how helpful he finds it, how one can customize its use, ways to lower the effective cost through a tax deduction, the possibility of a free demonstration, availability through catalogues, helpful tips before purchasing.
• Descriptive Video Service, or DVS, allows viewers watching a movie or PBS program on TV to make sense of words printed on the screen or interpret what is going on during scenes with no dialogue. TV equipment purchased since 1992 generally have a second audio program (SAP) feature which can be activated. Information on where to purchase or borrow DVS-treated films was discussed.
• An article by Jerry Rosenberg described how he coped with his diagnosis of macular degeneration and the guidance Nick Stevenson provided.
When E.B. White failed to drive his 92-year-old aunt on their annual inspection of fall foliage, he apologized. His Aunt Caroline reassured him: "Why, my dear, remembrance is sufficient of the beauty we have seen." -- E.B. White, essayist of The New Yorker magazine
• A moving article by Robert E. Johnson entitled "Coping, Not Moping." A series of progressively debilitating ailments challenged Mr. Johnson to develop coping mechanisms so as not to become despondent. He shared his thoughts as he dealt with the various adjustments he had to face.
• Four
books on living better with low vision were briefly discussed as to contents
and purchase information.
The books are:
Macular Degeneration: A Complete Guide to Saving and Maximizing Your Sight by Lylas G. Mogk, M.D. and Marja Mogk.
Macular Degeneration by Betty G. Wason
Coping with Vision Loss: Maximizing What You See and Do by Bill G. Chapman
Living Well with Macular Degeneration by Bruce P. Rosenthal, O.D.
"There is immunity in reading, formal society, office routine, in the company of friends and the giving of officious help to strangers, but there is no sanctuary in the bed from the memory of another. The past with all its anguish will break through any defence-line of custom or habit, but we must sleep and therefore dream." -- Cyril Connolly
• Reflections on the impact of September 11th tragedy - so many people are grieving.
• Those who suffer from macular degeneration know that grieving is hard work. Hopefully it leads to effective mechanisms for coping and the opening of vistas to a reasonably acceptable future.
• Following the successful implantation of a tiny telescope into one eye of a German woman with advanced macular degeneration, international trials were conducted. With postoperative rehabilitation therapy to coordinate the magnified sight in the implanted eye with the peripheral sight of the other eye, the operation is considered to be useful for some ARMD patients who meet certain criteria. The Intraocular Miniaturized Telescope (IMT) has been approved as an optical prostheses in the European Community and is in the process of being submitted to the FDA in the United States.
• There appears to be some benefit on macular health of eating dark green leafy vegetables; they contain certain substances that are components of Vitamin A, essential to sight. However, there is no scientific proof that the substances actually do protect sight. Nevertheless, vitamin manufacturers have added the compounds to their multivitamin products. Be aware that there are no government-recommended daily dosages for the compounds.
• Zinc and selenium are trace minerals that have long been believed to be vital to good vision, and some physicians recommend that their patients take them.
• There are many factors to be considered in taking vitamins, minerals and supplements. Since all the biological effects of these items are not known, it's always wise to consult a physician before taking them on your own.
• About six years ago, there was a major study sponsored by the National Eye Institute on the effects of taking antioxidants and/or zinc. The findings: Vitamins, except for those that are fat-soluble are generally considered nontoxic. This is also true of metals (e.g., zinc), but they can be toxic in irrational doses
"Wine comes in at the mouth
And love comes in at the eye.
That's all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh."
-- William Butler Yeats
• Results of eye research were reported at the most recent ARVO (Association for Research in Vision and Ophthalmology). Examples include progress in stem cell research, the effect of particular drugs and nutritional supplements on eye health, improved diagnostic methods, studies in blood flow, refined microsurgical techniques and instruments.
• Research is being done on creating sight using micro electronics implanted in the eye.
• TV or radio coverage of experimental treatments for ARMD may be misleading. Sometimes it's a public relations effort to attract grants; sometimes it's the result of a marketing effort to find paying customers for an expensive, unproven procedure.
• Computers are a great tool for performing everyday tasks such as communicating via e-mail, keeping track of finances, etc. This applies to everyone, including the visually impaired. There are programs available which enlarge text or in other ways enable the visually impaired to use computers.
• For those who can see, there are precautions to take to minimize problems that might result from prolonged viewing of a computer screen.
"As a beauty I'm not a great star,
Others are handsomer by far,
But my face I don't mind it,
Because I'm behind it,
It's those in front whom I jar."
-- A.H. Euwer
• Macular Degeneration was initially identified in older people - men and women over 55.
• In the early 20th century a German ophthalmologist, Dr. Karl Stargardt, began seeing a similar condition in much younger patients. Although Stargardt's Disease is a form of macular degeneration, there are some differences between that condition and age-related macular degeneration. For one thing, unlike ARMD, Stargardt's Disease is almost always inherited - i.e., caused by genes.
• Genes that cause another, less common macular pathology, Best's Disease, have also been discovered.
• It is commonly believed that finding the gene(s) causing a disease can lead to prevention or cure. But, the identification is only a first step in discovering what a gene fails to supply, synthesizing it, and administering it to a patient.
• Research on how genes mutate and sometimes begin a pathological process may eventually lead to prevention or cure of age-related macular degeneration, but that time is still far off.
• A listing of several sources which provide free catalogs for low vision aids.
"We are growing old together you and I. Let us ask ourselves, what is age like? ... One cannot read small letter books. Deeper and deeper one's old friends. Fewer and few one's dealings with young men. One thing only, the pleasure of idle talk, is as great as ever." -- Unnamed Chinese poet of the ninth century
• Article entitled, Growing New Tops, by Mitzi MacDonald. She is a low visionary person who offers practical tips and attitudinal changes that have helped her deal with her failing eyesight. The title, Growing New Tops, refers to the ability of giant sequoia trees to grow new tops when their highest branches have been severed by a storm.
• A list of resources for audio tutorials that help visually impaired people learn to use various computer programs is available.
• Two specific ideas were briefly discussed: a tutorial developed by the American Printing House for the Blind on computer operating systems, and a talking web browser developed by IBM which changes visual material into audio format.
• Comments by a low vision person who enjoys listening to short and medium wave radio stations around the world. National Radio Club provides service.
• Suggested procedures for persuading Medicare to pay for closed circuit television after they have refused to do so.
• The Veterans Administration offers ZoomText free to U.S. veterans. It is a computer program that enlarges text on the screen. An advanced version incorporates electronic speech.
• Veterans are entitled to visual aids, even though the visual impairment is not service-connected.
For copies of these newsletters, or to receive
Eyes Only on a regular basis, please call
(212) 605-3719or write to:
Association for Macular Diseases, Inc.
210 East 64th Street, 8th Floor
New York, NY 10021or send an e-mail to: association@retinal-research.org
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