NEWSLETTER. Dan Roberts. National Low Vision Support Group. In This Issue Poem: The Weaver. From the Director

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1 National Low Vision Support Group In This Issue 1 From the Director 2-4 News Briefs Article: Acceptance Doesn t Mean Giving In 5 Poem: The Weaver The NLVSG is made possible by the 2005 Healthy Community Award from the National Eye Institute (NEI) and by a grant from Genentech, Inc. To receive this newsletter by , send a message to: director@ mdsupport.org NEWSLETTER MD Support, Inc. Volume 2, Issue 1 - January 11, 2007 From the Director I m very excited about this coming year and the promises it brings in research and treatment for low vision. And I m looking forward to spending this hour each month with you and the ever-increasing number of affiliates around the world. We have made some changes to our program, the most important of which is a permanent archive of all of our presentations, which can be viewed anytime, both online and offline. This will hopefully allow many more centers to join us who were not previously able to do so, due to lack of Internet access in their meeting locations. There isn t much research to report this month, so I have included an excerpt from my book in this newsletter. It s from the chapter, Acceptance Doesn t Mean Giving In, something to remember as we set about making and trying to keep our New Year s resolutions. I hope it will give you food for thought. On the last page you will find the poem Tom Perski read to us last month, titled The Weaver. I think you will agree that it carries a good message of hope and purpose. Best wishes for all good things to come your way in 2007! Dan Roberts 1

2 News Briefs News Briefs NLVSG Newsletter Lucentis Available Soon in Europe Good news for our overseas community! Novartis has announced that the Committee for Medicinal Products for Human Use (CHMP) has recommended approval of Lucentis for treatment of wet AMD. The CHMP reviews drug applications for the European Union, Iceland and Norway, and the European Commission usually concurs with its recommendations. Lucentis has already been approved in the U.S., Switzerland and India, and now millions more may be given access to the drug in three months or less. A Safer Way to Treat SAD(ness) If you are affected by Seasonally Affective Disorder (SAD) at any level and are practicing or considering light therapy, please read on. Research has shown that melatonin is a necessary antioxidant for physical and psychological health. The high point of the melatonin cycle, however, lasts 9-10 hours, and the average person does not have (or allow) that much time to sleep. Blue light exposure during the day may make a person less drowsy and depressed by suppressing melatonin levels in the blood, but the body still needs up to 10 hours of high melatonin levels for peak health. Compounding the dilemma, blue light exposure appears to lead to macular degeneration in some people, due to interruption of the photoreceptor cells' metabolic visual cycle (see www. mdsupport. org/library/hazard.html). This makes blue light therapy risky, especially for people with compromised retinas. The obvious answer is to get more sleep; but for those who cannot do so, one option to potentially harmful blue light therapy has been proposed by Richard L. Hansler, Ph.D. (Director, Lighting 2

3 NLVSG Newsletter Innovations Institute, John Carroll University. Executive Director, Light and Health Foundation). Dr. Hansler's well-thought-out suggestion is to allow full completion of the melatonin cycle by avoiding blue light for 9-10 hours, beginning before sleep and continuing until morning. One easy way to accomplish this would be to simply wear your blue-blocking glasses for awhile before going to bed. Another is to switch to lamps that filter blue wavelengths. Dr. Hansler (who has AMD himself) has written a paper on the subject for the MD Support library. If you would like to learn more about his unique approach, ask your facilitator for a copy of the article, A Safer Way to Treat SAD which can be accessed from Acceptance Doesn t Mean Giving In from The First Year--Age-Related Macular Degeneration Why do you people always talk about accepting macular degeneration? I will never accept what is happening to my eyes! If you want to just lie down and die, then go ahead. But you ll do it without me. With that, M. J. left the support group and never returned. Having been with the group for only a week, she misconstrued the mood of peace and humor displayed by the members. Sometimes a whole day would go by without any mention of AMD, as if everyone had forgotten why they were there. Then ninety-one-year-old Bob M., one of the group s veterans, announced that he had finally learned to accept the disease. That s when M. J. said good-bye. What she didn t understand was that Bob (a decorated Royal Air Force pilot during World War II) was not talking about lying down and dying. He was talking about getting up and living. He finally understood that acceptance meant facing the disease as a reality and doing something about it. 3

4 NLVSG Newsletter In his essay The Ethics of Belief (1877), William Clay Clifford wrote, the method of solution is the other half of the answer. Why me? the despairing question often asked by the newly diagnosed, may be best answered with, Let s find out. According to Clifford, the process of learning that would follow might actually lead to an acceptable answer by which despair would be abolished. At our June session, we saw Jim move from depression to acceptance in just a few weeks of low vision rehabilitation. He had walked his mile with vision for more than half a lifetime. Then, by courageously facing and learning to deal with his unexpected visual impairment, he gained the strength to go the rest of the way when much of that vision was lost. In her book, Retinitis Pigmentosa: Dealing with the Threat of Loss, author Dorothy H. Stiefel, wrote: Now you see, and now you don t. Acknowledge it for what it is: reality. During the first years of losing and not fully understanding why, I was the Angry One. A little later, partially resigned to my misfortune, I became a bundle of raw frustration: The Impatient One. One day, after twenty years of experiencing, resigning, and feeling down... something clicked in my head, and the fight was on! Emotionally battle-scarred, I had definitely become a challenger. The day of reckoning... came with a rekindling of a long repressed natural sense of humor. These people achieved acceptance. In each case, it was a learning process motivated by frustration and fueled by courage. For you, it may come more gently and by a more circuitous route. However it comes, don t be afraid to face the process. That is where you will find the answers that can lead to your own acceptable future. 4

5 This meaningful poem, read at our last session by Tom Perski, is reproduced here at the request of some of our members. The Weaver My life is but a weaving Between my God and me. I cannot choose the colors He works in steadily. Often times He weaves sorrow, And I in foolish pride Forget He sees the upper, And I the underside. Not 'til the loom is silent And the shuttle ceases to fly, Will my God unroll the canvas And explain the reasons why. For the dark threads are as needful In the Weaver's skillful hand As the threads of gold and silver In the pattern He has planned. NLVSG Newsletter (Anonymous) Next Month "Focus on Lighting" Everything you need to know about the best and safest lighting for your eyes, presented by low vision expert Charles Schwartz. 5