Vision Loss: Strategies for Living with Hope and Independence - Softcover

Wolfe, Peggy R

Softcover

ISBN 10: 0979294533 ISBN 13: 9780979294532

Publisher: Park Publishing, Inc., 2014

Synopsis

Filled with compelling ideas and practical tips, the updated third edition of this book--formerly titled Macular Disease--broadens its scope to offer a positive, take-charge approach to living with declining sight, regardless of the cause. Featuring photos of special lighting and other aids and insight from the author's own personal experience with impaired vision, this oversized handbook is ideally formatted for readers with vision loss by employing the use of large print on glare-resistant paper. Offering reassurance, hope, and personal insight, this revised edition contains practical tips for performing daily tasks, descriptions of adaptive strategies, and an expanded section on high-tech assistive technologies. With strong endorsements from medical communities, the book includes an invaluable index and resource list for readers.

About this title

About the Author

Peggy R. Wolfe developed her expertise about macular disease while living with her own macular degeneration since 1999. Her history with the disease goes back 50 years when her uncle and later her mother developed macular disease, and she helped them learn to cope. She lives in Minnetonka, Minnesota.

Excerpt. © Reprinted by permission. All rights reserved.

Vision Loss

Strategies for Living with Hope and Independence

By Peggy R. Wolfe, Marly Cornell, Scott Knutson

Park Publishing, Inc.

Copyright © 2014 Park Publishing, Inc.
All rights reserved.

ISBN: 978-0-9792945-3-2

Contents

Introduction: Hope and Independence Intertwined, 
1 Nourish the Spirit, 
2 Eye Care, 
3 Lighting for Essential Contrast, 
4 Read to Expand Horizons, 
5 Nurture Your Body, 
6 Develop Your Senses of Touch and Hearing, 
7 Cooking and Eating, 
8 Organize Your Living Space, 
9 Find Hard-to-Spot Things, 
10 Travel and Transportation, 
11 Accept Help, 
12 Discover Vision Rehabilitation, 
13 Embrace Technology, 
14 Research Changes the Future, 
Appendix A Low Vision Stores, 
Appendix B National Information Resources, 
Appendix C Manufacturers of Technology Products, 
About this book's design, 
Acknowledgments, 
About the author, 
Index, 
Order form, 

CHAPTER 1

Nourish the Spirit

* * *

WHAT DO WE MEAN BY "SPIRIT"? People think of spirit in many different ways. One definition is "life force." Helpful qualities within that concept include backbone, boldness, character, dauntlessness, energy, enterprise, enthusiasm, grit, guts, heart, humor, morale, motivation, resolve, soul, vitality, warmth, and will. Developing these inner resources will help you sustain a rewarding and independent life full of hope, courage, resilience, and purpose.

Develop positive attitudes and resilience

Consider the following qualities as gifts to help you develop the strong spirit that leads to a positive hopeful outlook: acceptance and patience, powerfulness, enthusiasm and enjoyment, and most important — gratitude. Think of how you can use these qualities to enhance your day- to-day life and develop resilience. I think of resilience as the ability to adjust to the changes and challenges we meet with vision loss by using our inner strength and outer resources.

Acceptance and patience

Realize that life involves change, and living with vision loss will include limitations you didn't expect. You may need to allow yourself to grieve your losses as you move toward acceptance. Understand that you are dealing not only with the loss of vision, but also the loss of what you thought the rest of your life might be like. As with any other grief, you may feel shock or disbelief, or even find yourself in denial that this is happening to you. Anger, fear, and questions of "Why me?" are common reactions. Certain everyday things may take longer to accomplish. You will be able to meet such new challenges more effectively if you can nurture a sense of calm and patience.

MY STORY

Spillovers and Knockovers

As my vision declined, I found it more and more difficult to see the level of coffee in the cup as I was pouring. I had frequent spillovers, which made me frustrated, impatient, and mad at myself. I also knocked over my glass more often, spilling milk all over the table — and sometimes my chair and the floor.

I finally decided to allow myself one spillover or knockover per day. Now I've accepted that I will have these incidents. When I have a day with no such accident, I feel elated at having such a "good" day. When I do spill or knock something over, it's fine with me, because that's my expected allotment for the day. So I don't feel angry or impatient with myself anymore. On the rare occasion that I have two accidents — I just assign one to the next day!

* * *

Powerfulness

Many things in life are, and always have been, beyond our control — from the forces of nature to the behavior of others. Being confronted with some new limitations does not mean you are suddenly less powerful. Know that you still have control over how you live your life. There are still many parts of life that you can control. The most important thing you have a choice about is your attitude. When you are discouraged, counter that feeling with a determination to rule your own life. Since diseases affecting vision often have a slow progression, you may well have years of quite functional, albeit declining, vision. Consider such a diagnosis an "advance notice" — a gift of time to gradually prepare for the day that could come when you might have to rely only on limited peripheral or central vision. This book serves as a guide to things you can do in various areas of your life to bolster your confidence, sense of power, and ability to maintain your independence.

Enthusiasm and enjoyment

Be good to yourself, and do what is most important to you. At first, most people who receive a diagnosis of a vision disease feel confused, frightened, and depressed. I suggest that the first thing to do in that uncertain time is to figure out what things in your life bring you the most contentment and joy. Then immediately make plans to do one of these things as a special treat to yourself. Choose something that fills your heart with great joy. Practical activities required for daily living don't qualify. What you pick need not involve a financial expenditure, but rather the investment and the reward of love and time well spent. Take a walk with a friend in a beautiful park, or visit someone you haven't seen in a long time. Enjoy a museum, or go to a concert, or play with a friend.

You can save most of your ideas for later times, but this first one should be something really special. Then make a decision to find ways to be good to yourself on a continuing basis. Find ways to relax and have fun. If you want to meet people and learn new things, check out activities offered in your local area, such as community and senior centers — sign up for their newsletters and monthly calendars. Local low vision agencies offer classes and group excursions.

Maybe your idea of fun and relaxation is simply a slower pace to your life, so you can savor each day. Keep in touch with friends and relatives, play games on the Internet. Most important, be good to yourself.

Gratitude

Perhaps the most important quality of all is gratitude. Think of things in your life for which you are thankful.

I am thankful for —

* living for seventy years before the diagnosis of early macular disease.

* the gift of time to find ways to remain as independent as possible.

* willingness to ask for help when needed (still hard for me).

* family and friends who graciously help with tasks and transportation.

* injections in my right "good" eye that stopped bleeding.

* continued research into the treatments and cures for eye diseases.

* the inspiring people I've met in my local chapter of the Foundation Fighting Blindness.

Coping with grief and stress from loss of vision

Emotional reactions upon diagnosis may include a profound sadness. Many people have trouble dealing with anxiety about the future. These are normal and understandable emotions, and allowing yourself to feel them can help you to accept what is happening and then let go of your fears. If vision loss — which perhaps comes on top of other losses — causes you significant depression, it may help you, as it has helped many others, to seek counseling or join a vision loss support group. Be patient and gentle with yourself as you strive for acceptance every new day — it will bring both peace and the will to move forward to your "new normal" life.

Stress is a common reaction to vision loss. Taking twice as long to perform a simple task or beginning to acknowledge that you should stop driving are typical stressors. The body frequently expresses stress in the form of headaches, stomachaches, or trouble sleeping. When you feel particularly harried or frustrated or sad, try these stress-reducing methods:

* Take a break.

* Talk about it. If you are alone, call a family member or friend. The important thing is to talk about it.

* Tell someone if you are overwhelmed or need help, rather than wonder why others can't or don't see that you need help.

* Recognize that a grief expressed is a grief diminished.

* Know that it's okay to yell or cry.

* Realize that stress is contagious — if you feel stressed, chances are good that those around you will begin to feel stressed. Trying to ignore, deny, or bottle up feelings can result in a group of inwardly seething, frustrated people.

* Help someone else.

The best way to prevent stress from building up is, of course, to prevent it from taking hold in the first place. Here are some ways to ward off stress.

* Know your limits. Set realistic goals when planning your day.

* Be patient and accepting of yourself.

* Take frequent breaks by stretching and deep breathing.

* Refuse to hold grudges or feel sorry for yourself.

* Get enough sleep.

* Exercise regularly.

* Meditate or engage regularly in spiritual practices consistent with your beliefs.

* Laugh often, even if you don't feel like doing so. Smiling relaxes the muscles in your face.

MY STORY

Dream Trip after a Scary Prognosis

When my retinologist told me his guess that I had one to two years before I'd lose my central vision, I sat down and thought about how this new situation would affect my life — what I might be losing that mattered most. I decided the first step was to figure out what was most important to me. My answer was twofold — first, to spend time with my daughter, who lives in another state; and second, to experience the great joys of my life — classical music, opera, ballet, and visual arts. So I immediately planned a trip with my daughter to New York City. We shared all expenses, which helped to make our trip possible. We visited art museums and attended opera and ballet performances. I will always have the memory of our special time together doing things we both love.

* * *

Nurture your mind

Keep your mind active by reading. Chapter 4 is devoted to the many ways to read, from large print books to electronic books to "listening" to books. Listening is a skill that becomes increasingly handy as vision declines. Listening to the radio or TV with your eyes closed helps to develop those skills.

Learn something new. Adult enrichment classes offered by your school district can exercise your mind as well as your body. Consider classes offered by community education organizations and low vision agencies. If you are not already using a computer, start now. Developing computer skills will open untold doors for you, and technological advances in accessibility are making computers easier and easier to use.

Find a spiritual home

For many people, belonging to a faith community brings spiritual fulfillment and peace. Membership in churches, synagogues, mosques, or other places of worship can lead to fellowship with others who can provide comfort and support. Many faith communities offer study groups and classes. If you do not already have such a spiritual home, but feel a yearning, seek out this type of supportive community.

Meet others with vision loss

Getting to know others with vision loss is reassuring and inspiring. You are not alone, and your hope will be replenished by learning how others navigate their lives. I am fortunate that there is a local chapter of the Foundation Fighting Blindness in my hometown. Knowing our members has transformed my life. I've met inspiring people of all ages with eye diseases I didn't even know existed. Learning that we all share the same challenges led me to write this new edition aimed at all those with vision loss.

Ask your doctor what vision organizations and agencies are available in your community. Some offer support groups and a variety of other services.

Volunteer for rich rewards

Perhaps the best thing to do for yourself, while helping others at the same time, is to become a volunteer. Churches, the United Way, senior centers, and other nonprofit organizations need volunteers for all types of jobs. Think about your skills and what you enjoy doing, and make a call. If there is a vision loss organization in your community, you can join an advocacy group or work with a staff member in a support group. The possibilities are endless.

MY STORY

A New Church, a Perfect Volunteer Job

I had been halfheartedly looking for a spiritual home for many years. I'd attend one church for a few months, then another. I did not feel at home in any of them. Then one Sunday, I attended a service at a church I'd been hearing had beautiful music. I had not gone there before, because I thought it was too huge a congregation. But as soon as I felt the friendly atmosphere and heard the soloist and choir, I knew this was where I belonged. My search was over. I joined the church right away. Soon I wanted to be more closely involved in its community, so I started looking for a volunteer job among the many offerings.

One day the coordinator called, said there was an opening in the music library, and asked if I'd be interested, considering I had a library degree. I said yes, and was soon working with a special woman who has become my "volunteer buddy." Our ongoing project was to list in a database each track of the hundreds of compact discs held by members of the music department. Our trio (coordinator and two volunteer buddies) has developed a close and loving relationship that is important to each of us. My friendship with these two women has enriched my life beyond words. The bonus is that I'm working with music, too. These have been great gifts to me.

CHAPTER 2

Eye Care

* * *

MONITOR YOUR VISION regularly. You are the one who is best able to identify small changes in your vision. Develop a proactive approach, and take fast action if you notice any sudden change. That may require immediate treatment. This is an important way to take care of your eyes and to keep seeing at the highest possible level.

Home vision tests

Annual checkups are not enough if you have macular degeneration. You must be responsible for monitoring your sight on a regular basis. You can do simple tests at home. Your eye doctor may have directed you to use an Amsler grid to check your own eyes periodically. Make the grid test a habit by doing it in the same location, with the same lighting, and at about the same time of day, so you can more accurately compare your results with those of previous tests. Be aware of what you see with each eye in order to notice any changes since the previous test.

There are other important ways to monitor your sight. Develop your own benchmark system. For example, you can test your vision by looking, with each eye, at a bedside clock, your watch, or the bathroom scale, or by reading with each eye to see if the lines are wavy or if your field of vision has narrowed. Choose something that you read every day or at least every week, such as a TV guide, a newspaper, or church program. Take note if you suddenly need more light for a particular task or if you develop a new sensitivity to glare. If you notice a change, see your eye doctor right away.

There is successful treatment for the wet form of macular degeneration and, at the time of this writing in 2013, promising research is underway for treatment of the dry form. Stem cell and gene therapies are promising new treatments for a variety of degenerative retinal diseases, such as retinitis pigmentosa, Stargardt disease, and Usher syndrome. See the final chapter, Research Changes the Future, for more information.

Contact your doctor if you notice a change in either eye

* Act immediately, in time for helpful treatment.

* If you have trouble getting an immediate appointment, be an advocate for yourself and keep insisting that you see the doctor.

* Do not procrastinate!

Seeing things that aren't there? Charles Bonnet syndrome (CBS)

Don't be scared if you suddenly start seeing things that you know are not really there. This condition was identified and named by Swiss philosopher Charles Bonnet in 1760. His grandfather was almost blind, yet would state that he saw people, figures, buildings, and birds that he knew were not there.

The images are called visual hallucinations, and there are no accompanying voices or sounds, smells, or tastes. CBS is not a mental illness. The hallucinations are easily distinguishable from what is real even though they fit into the environment, such as children riding their bicycles down your street.

The images are the result of the brain's reaction to severe vision loss, usually from age-related diseases such as macular degeneration, diabetic retinopathy, cataracts, and glaucoma. When the symptoms first occur, the images often come frequently, maybe several times a day, but eventually diminish.

Characteristics of Bonnet syndrome include —

* hallucinations consisting of familiar images of people, animals, buildings, plants, trees, patterns (such as mosaics or lines) lasting for a few seconds, few minutes, or a couple of hours, over a period of weeks to years.

* possible initial misdiagnosis of early dementia or psychosis.

* spontaneous remission.

The frequency of hallucinations is sometimes reduced by staying physically and mentally occupied, spending time with family or friends, and participating in social activities.

Bring up the subject of Charles Bonnet syndrome to your family now, so they know about the symptoms before they could appear, and understand that these hallucinations are not a cause for worry. If there is concern, make an appointment to see your eye doctor to learn more about the disease. The best treatment is knowledge and reassurance. A positive attitude is the key.

Visit your eye doctors regularly for checkups and tests

When dealing with eye disease, it is important to have complete eye examinations every year. For retinal diseases, visit a specialist in retinal in diseases, a retinologist. You may be directed to have more frequent appointments. See an ophthalmologist on an annual basis for a general eye checkup and for a possible adjustment to the prescription for your eyeglasses.

(Continues...)

Excerpted from Vision Loss by Peggy R. Wolfe, Marly Cornell, Scott Knutson. Copyright © 2014 Park Publishing, Inc.. Excerpted by permission of Park Publishing, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Edition details

• Publisher: Park Publishing, Inc.
• Publication date: 2014
• Language: English
• ISBN 10: 0979294533
• ISBN 13: 9780979294532
• Binding: Paperback
• Edition number: 3
• Number of pages: 272