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The First Year®--Age-Related Macular Degeneration

An Essential Guide for the Newly Diagnosed
Marlowe & Company (New York, NY, Sep 2006)
Daniel L. Roberts, Author

Editorial Review:

Age-Related Macular Degeneration is the leading cause of severe visual impairment in people over 50, affecting 15 million people, with an additional 2 million diagnosed annually. From the moment of his own diagnosis, educator and musician Daniel Roberts made it his mission to provide the most up-to-date information about AMD through his website at www.mdsupport.org. Now, as a "patient-expert," Roberts applies his wealth of knowledge to The First Year® series, providing crucial information for the newly diagnosed, including cutting edge therapies and tips on how to navigate everyday tasks with diminishing eyesight. An essential resource for everyone who wants to be an informed, active participant in the management of their condition, The First Year®--Age-Related Macular Degeneration covers a wide array of subjects including:

By providing reliable, useful, empathetic, and up-to-date information you need to know when you need to know, The First Year®--Age-Related Macular Degeneration will be an indispensable book for everyone adjusting to life with low vision.

Set in larger type for easier reading, The First Year®--Age-Related Macular Degeneration includes a glossary of ophthalmic terms; a comprehensive reference section of more than 100 resources for low-vision devices, audio books, research publications, financial assistance, local and national organizations; and first-hand accounts of living well with AMD.

DANIEL L. ROBERTS is a visually-impaired educator and musician who has spent the past twelve years devoted to researching and helping others with Age-Related Macular Degeneration. Roberts is the recipient of the 2004 Distinguished Service Award presented by the American Optometric Association Low Vision Rehabilitation Section. His organization was also awarded the National Eye Institute's 2006 Healthy Vision Community Award for innovative approaches to vision-related health education. He lives in Grandview, Missouri. You can find a large AMD community online at www.mdsupport.org.

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Contents

Foreward by Lylas G. Mogk, M.D.

Author's Introduction

Day 1:

Learning: What is AMD, and how did you get it?

Living: Help Others Understand

Day 2:

Learning: How your eye is built

Living: Diseases of the retina

Day 3:

Learning: Visual symptoms of AMD

Living: Monitor Your Own Vision

Day 4:

Learning: Keeping your eyes healthy

Living: Your Life: Quality vs. Quantity

Living as a VIP in a sighted world

Day 5:

Learning: A Journey Through Low Vision Rehabilitation: Jim's Story

Living: Acceptance Doesn't Mean Giving In

Day 6:

Learning: The T.A.S.K. of Living With Central Vision Loss

Living: Beverly's Story: Blessings On My Path

Day 7:

Learning: Who are those people in the white coats?

What to look for in a low vision specialist

Living: Understanding your doctor

First Week Milestone

Week 2:

Learning: The War on AMD

Living: Alternative Medicine

Week 3:

Learning: Surgical Treatments and Interventions

Living: Herbal remedies and dietary supplements: good alternatives?

Week 4:

More answers to important questions

First Month Milestone

Your First Year: Learning From Living Every Month

Month 2:

Learning from Living: Questions to Ask Your Doctor

Month 3:

Learning from Living: Now what?

Month 4:

Lea rning from Living: Driving and AMD

Month 5:

Learning from Living: Protect Yourself

Month 6:

Learning from Living: Straight Talk About Cope-ability

Half-Year Milestone

Month 7:

Learning from Living: The Art and Practice of Eccentric Viewing

Month 8:

Learning from Living: Your Success is Mostly Up to You

Month 9:

Learning from Living: Seeing Well With AMD

Month 10:

Learning from Living: The End of the War

Month 11:

Learning from Living: Your Gift to the Future

Month 12:

Learning from Living: Where to Go From Here?

Appendices:

Glossary of Terms Related to Retinal Disease

References & Notes

Index

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Forward

Lylas G. Mogk, M.D.

It is a shock to discover that the problem with reading the newspaper is not in your glasses, but in your eyes. The diagnosis of macular degeneration and the loss of any amount of central vision is a stunning experience for sighted adults. We are used to conveying vast amounts of information visually or in print. Our buildings, offices, homes, and appliances are designed with the assumption that everyone has full vision, and our love affair with automobiles has produced urban geographies in most parts of the country that require everyone to drive. Those of us who are sighted routinely assume full sight in others and practice many social behaviors that are sight-based, such as giving directions by pointing, and responding to comments with facial expressions. If we had tried to build a society and a culture that would condition us to be totally dependent on our vision in every respect " physically, functionally, socially, and emotionally " we really could not have done a better job. As a result, sighted adults are strikingly ill-adapted to vision loss.

This is compounded for the central vision loss of macular degeneration, because central vision occupies a dominant position in our consciousness. Central vision is what we see when we look directly at something, the words we are reading, or our child's face, for example. The macula, which is responsible for central vision, is very small spot at the center of our retina, but its visual message occupies half of the area of our brain that is devoted to interpreting vision. Peripheral vision is everything we see that we are not looking directly at. It is important vision that allows us to walk in a crowded area without bumping into others, but it does not help us read the newspaper. We can lose a lot of peripheral vision without noticing, but we are immediately aware of a little bit of central vision loss.

It is an irony that central vision loss, as striking as it is to the individual, is completely invisible to others. If you have central vision loss from macular degeneration, you look fine, like you always did. You make eye contact and walk around well. You see a lot, so others, including physicians, may underestimate the impact of macular degeneration. Family and friends may conclude that you are just seeing what you want to see. "Grandpa," my daughter used to say to my father, who had advanced AMD, "I think you're fooling me. How come you could see a little button on the floor but you can't tell who I am." Or they may overestimate, and become fearful and overprotective.

The combination of central loss and peripheral sparing makes it difficult to describe the experience of macular degeneration, to explain why you can see some things but not others. Our vocabulary of vision contributes to this by offering the limited choice of "sight" or "blindness," with the implication that blindness means no vision at all. Individuals with macular degeneration do not fit into this dichotomy: on the one hand, with a little contrast loss from early macular degeneration you may be very aware that your vision is affected and that some important details obscured; on the other hand, with even advanced AMD you retain full peripheral vision, you are not blind, and never will be. The intermediate term "hard of seeing" coined by Lorraine Marchi, LHD, affords a more accurate perception of central vision loss from macular degeneration as a real challenge to our daily lives but one we can meet.

To meet this challenge and continue living fully with central vision loss, we need to be empowered with knowledge about macular degeneration and patterns of vision loss, creative strategies for coping emotionally, techniques and tools for using remaining vision efficiently, information about the spectrum of resources, and support from those who share the experience.

This book reaches out to you to offer all of these. It is a testament to the impact of early vision loss, but also to the fact that you can live fully and vibrantly in spite of vision loss at any level. It provides a wealth of empowering knowledge, important information, perceptive observations, compelling stories, and practical suggestions from patients and professionals alike. It is spiced throughout with enormous empathy, kindly tough love, inspiring enthusiasm, and the endearing humor of Dan Roberts and the people who inhabit his worldwide AMD community–all of whom are walking this path with you.

Lylas G. Mogk, M.D.

(Lylas G. Mogk, M.D., is an ophthalmologist, Medical Director of the Henry Ford Health System Visual Rehabilitation and Research Center, in Grosse Pointe and Livonia, Michigan, co-author of Macular Degeneration: "The Complete Guide to Saving and Maximizing Your Sight ", and Chair of the American Academy of Ophthalmology Vision Rehabilitation Committee.)

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Author's Introduction

Dan Roberts - Author of The First Year Age-Related Macular Degeneration

In 1993, I was in my twenty-second year of public school music teaching–fully intending to reach full retirement by my mid-50's. Then, in 1994, my entire future took a detour. The spots that I first thought were caused by temporary "burn-in" from the bright light of the copy machine turned out to be much more.

When the spots didn't go away and I started noticing things disappearing into them, I decided it was time to see a doctor. The next bright flashes were into my dilated eyes as the examiner took photographs of my retinas. The diagnosis that followed was the most difficult news I have ever received. My central vision was deteriorating.

To help slow down progression of the disease, the doctor injected a steroid into the tissue around my worst eye and told me there was nothing more that could be done. I asked him if my vision might last until retirement. He gave me my answer by smiling sympathetically and crossing his fingers as if to say "good luck." Then he left the room, making that the last time I saw him, because I chose to look elsewhere for my answers.

The Internet was still new, but I thought maybe that strange invention called the World Wide Web might be where I could find help. After weeks of searching through the tangle of disorganized information and dead ends (I was sure that's why it was called a "web"), I discovered a little group of about a dozen people who had found one another and formed an email support group called MDList. They had all lost central vision from macular degeneration, and they took me under their wings.

Cut to the present. My left eye has progressed to total central vision loss, and my right eye is holding at 20/40 corrected. I had expected it to be worse by this time, which is why I opted for early retirement to run my own performing arts school on my own schedule. What I didn't expect was the direction my life took.

I am now the owner of MDList, which has grown to nearly 400 people from more than 20 countries. Over the past twelve years we have gathered more than 650 Internet pages of documents, and our web site averages 2.5 million hits annually from patients, family members, and eye care specialists who are looking for information and support.

In order to better reach out to the millions of people who are in need of help, we incorporated in 1998 as a nonprofit charity under the name Macular Degeneration Support and acquired a 12-member professional advisory board to guide us. Within five years of diagnosis with a disease that I thought would destroy my future, I found myself following a new and unimaginably rewarding career as director of one of the leading low vision organizations in the world.

Our primary goal is to ensure that no one will ever be alone with this disease. No newly-diagnosed patient should ever walk out of a doctor's office with nowhere to go and no one to turn to. Everyone should have immediate answers to the "Big Ten" questions:

The First Year®--Age-Related Macular Degeneration is a compilation of the knowledge and experiences of patients, doctors, social workers, nutritionists, and low vision rehabilitation specialists who deal with macular degeneration on a daily basis. Everything is here to provide you, your family and your friends with an understanding of your condition and your needs. Many people from our AMD Community, both laypeople and professionals, have contributed personal stories and informational articles to these pages to empower you with the weapons you need for waging an all-out war against the emotional onslaught of potential vision loss.

Based upon the course of most patients' needs, the book guides you through the answers you want, and in the order you want them. You will first be taken through your first week day by day to respond to your most immediate concerns. Each of the days will walk you through easy-to-understand topics (Learning) followed by ways you can put the information into practice (Living).

After the first seven days, the chapters are organized by weeks and then by months, as the focus broadens into issues secondary to your initial needs. Learning and Living, by that time, will be presented simultaneously, because you will have developed a solid foundation of knowledge. Learning will, therefore, require less of your time, which can then be spent on maintaining and improving your quality of life.

An equally-important section of the book is the resource section at the back. In addition to a listing of AMD organizations in the final chapter, the following appendices provide additional contact information about state agencies, financial assistance organizations, dealers in low vision devices, books in large print and audio, and drugs to avoid. You will also find a complete glossary of ophthalmic terms, with definitions you can understand.

In other words, The First Year®--Age-Related Macular Degeneration is intended to be a complete resource that will help you deal with every aspect of age-related macular degeneration and related diseases which may lead to central vision loss. It is more than a book about AMD. It is a reference to which you will want to return often as your needs evolve.

You will also want to pass it along to other people in your life. By helping to educate your immediate family and social circle, you will build around yourself a strong fortress of knowledge and support. That will be of immense comfort to both you and them.

On behalf of all whom you will soon meet in these chapters, thank you for joining our worldwide community of caring and information. Hopefully, the sum of our parts will keep you whole. Your life is changing, and we hope it will be for the better by our contribution to it.

Dan Roberts

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