Sharing Solutions Spring 2005 A newsletter for People with Impaired Vision and Their Support Networks One Hundred Years of Leadership This spring marks the launch of Lighthouse International's Centennial year. Founded in 1905 by Winifred and Edith Holt, the Lighthouse is celebrating 100 years of helping people live better with vision loss. Our century-old mission promotes independence, employment, equal access and quality of life for people of all ages who are blind or partially sighted. Sharing Solutions embodies the Lighthouse mission. It debuted nearly 12 years ago, establishing an exchange among support groups for people with impaired vision around the nation and abroad. This information-sharing network has grown considerably since 1993 and, thanks to our readers, so has this newsletter. Your input — sharing questions, concerns, experiences and solutions about living with vision loss — has been vital. And we have responded to your requests to cover such topics as the latest treatments, new technologies and research on coping with, and adjusting to, vision loss. In this issue, we address a common concern and difficult decision people who become visually impaired face: the decision to drive — or not to drive. Thank you for sharing your insights and experiences related to "giving up the keys" and the impact it has had on your lives. We hope you'll find what your fellow readers had to say interesting and helpful. We also explore the roles spirituality and religion play in coping with vision loss, highlighting findings from Lighthouse research studies. And we invite you to share your spiritual or religious experiences, and how they have affected your adjustment to vision impairment in our next "Coast to Coast" exchange. In addition, an update about vitamin E and age-related macular degeneration is included to keep you informed about the latest recommendations. Enjoy the newsletter! Carol J. Sussman-Skalka Newsletter Editor Spirituality and Coping with Vision Loss by Mark Brennan, PhD In recent years, there has been more attention given to religion and spirituality and their relationship to physical and mental health. As part of our ongoing studies on coping with, and adaptation to, vision impairment, researchers at Lighthouse International have been examining the role that spirituality and religiousness play in this process. Our research is not aimed at promoting religion or advocating a particular set of beliefs. Its purpose is to understand the importance of these resources for those who are adjusting to vision loss. People express religiousness and spirituality differently, so it may help to explain how these terms are defined. Religiousness is adherence to the beliefs and practices of a particular denomination, creed or sect. In contrast, spirituality is one's sense of life's purpose and meaning, feelings of personal integrity, transcendence over one's immediate circumstances, and/or a feeling of being connected to the larger world. People may or may not express their spirituality through formal religious practice. One research participant who does told us, "My church is my total support." Another related how church was important in coping with vision loss: "Now I have to wait for someone to bring me to church. That's what keeps me going. It gives me a lot of understanding and helps me deal with things." Others feel a sense of spirituality, but don't express it through organized religion. One individual commented, "I don't go to church. I can go to the mountains or to the ocean and sit there and something happens — I think it is religious. [This] something is bigger than myself." Research Findings Whether or not spirituality is expressed through organized religion, our research has found that it is a strong, positive factor in adapting to vision impairment in terms of psychological well-being. Those who reported high levels of spirituality in our study were less likely to feel sad or depressed compared to their peers. What can explain this finding? One possibility is that spirituality can help in adjusting to challenges like vision loss because spiritual beliefs provide a sense of consolation, helping us to cope with life events by giving a sense of purpose and meaning to our experiences. Spirituality can also help to transcend our difficulties. One person told us, "The Lord will take me through all my trials and tribulations. I take one day at a time." Another person remarked, "That's my joy. You know I am not angry even because of my vision. I am still thankful I have life. My religion is important because it gives me strength and I am so frustrated." Another remarked, "I don't know what my strength is, but I have always been able to cope. I think faith has a lot to do with it." And in the same vein, one person told us, "I gained more strength in God. I learned that even without my vision I would still be all right because of my trust in God." In line with this, prayer was frequently mentioned as a way of coping with vision impairment. One person told us, "I have a St. Anthony and [a] St. Theresa on my dresser to pray to that were given to me when I had my operation for cataract." Prayer was an important way of coping with vision loss, even for those who weren't necessarily religious. One person explained, "I, strangely, believe in God, but as far as the church goes, I don't participate in church drives or anything like that. Like with my poor vision, I pray to God and ask him to help me." The Role of Religious Communities The second way that spirituality may ease adjustment to vision loss is that people involved with religious congregations may have additional social support resources for coping with difficulties due to their impairment. Being helped by one's faith community was an important source of support for many people we interviewed, and over one-fifth of those who had a religious affiliation had received some type of congregation-based support. The most frequent type of assistance received was emotional and spiritual support. An older woman shared, "Meeting with friends from the congregation is emotional support in and of itself. My sister has macular degeneration and she's very dependent on the congregation." Another individual remarked about how his congregation supported his feeling of connection to others: "There's a church nearby that I go to three or four times per week to hang with the guys, to play cards, checkers, etc. It helps me to keep in contact with people." However, some noted that their vision impairment was an obstacle to interacting with other members of their congregations, "[I have a] problem in church with people coming up to me. They have to introduce themselves because I don't immediately recognize or see their faces." And some older people with vision loss withdrew altogether from spiritual and religious activities because they didn't wish to be a burden to others. After emotional and spiritual support, getting a ride or escort was the most frequently mentioned type of help received from religious communities. While this type of assistance was often for more general activities like shopping, it also helped many to continue their attendance at religious services. One person explained, "I used to go [to church] every day. Now I go on Tuesdays and Sundays — somebody comes and takes me." Another important type of help was receiving meals or assistance with food preparation and daily chores. For some, just knowing that support was there if they needed it provided comfort. One person explained, "I've always been religious and received religious education. It's [religion] a great source of support. I don't use that support, probably others do." Another said, "I didn't need any help. They sent me letters asking me if I need any care but I don't. But when it comes to the point that I do need it, I'll take it." A third person told us, "[I] have not solicited help but I'm sure if I needed it, they would be there." For many people with vision impairment, continued participation in their spiritual community may pose some additional challenges. Trouble with reading makes participation difficult; for example, being unable to read the program of services or take part in prepared prayers, responses or hymns. While many report they are able to follow the service "by ear," others find these difficulties so discouraging that they stop attending. For the 10–20% of older adults who have limitations in both vision and hearing, audio compensation for reading may not be possible and other creative solutions need to be developed. As one person explained, ". . . I go to mass upstate with my daughter but I can't hear anything . . ." If you're unable to leave the house to attend religious services, participation in services broadcast over radio or TV is still possible. While this may not be the most preferred way of continuing your religious participation, it does allow you to maintain connections to religious traditions. One person told us, "I listen to the sermon on TV and pray to God." "In the future, Internet technologies may be developed to allow for "distance" participation in religious services via a home computer. As the costs associated with such technologies continue to decrease, this option could allow many adults who are unable to travel to services another way of continuing to participate in their religious communities. So what does this all mean? If spirituality has been a part of your life, it can be a great source of support and comfort in coping with vision loss. And, if it hasn't, you may find that seeking out faith-based groups can, at the very least, expand your social network and your involvement in community and leisure activities. • Mark Brennan, PhD, Senior Research Associate, Arlene R. Gordon Research Institute, Lighthouse International (sidebar, page 2) Whether or not spirituality is expressed through organized religion, our research has found that it is a strong, positive factor in adapting to vision impairment in terms of psychological well-being. Update on Vitamin E and Age-Related Macular Degeneration by Eleanor E. Faye, MD A recent study published in the Annals of Internal Medicine reported that taking high- dosage vitamin E supplements equal to, or greater than, 400 IU may increase the risk of death. Since vitamin E was one of the components of the multivitamin supplement used in the National Eye Institute's Age-Related Eye Disease Study (AREDS), the AREDS Coordinating Center sent a letter to all study participants to clarify the findings and allay any concerns that the new report might cause. The letter points out that most of the clinical trials included in the analysis used higher amounts (greater than 400 IU) of vitamin E, and the few that used about 400 IU did not find an increased risk of dying for those who took this dose. It also explains that the 400 IU dose of vitamin E in the AREDS formulation does not imply increased risk of death for persons who are taking the supplement to prevent the progression of age-related macular degeneration (AMD). The Center reaffirms the benefit of taking the AREDS multivitamin because data show that it can reduce the risk of developing advanced AMD by about 25%. Since vitamin E is a blood thinner, you do need to be mindful of your intake of other blood thinning agents, such as aspirin, fish oil, gingko biloba, concentrated extracts of ginger and garlic, as well as medications like Coumadin and cortisone. All of these can contribute to thinning of the blood, which can result in bruising and even eye hemorrhages. Talk with your doctor or pharmacist about possible interactions between your current over-the-counter, herbal and prescribed medications. Conduct a full inventory of all your vitamins, medications and herbal supplements to ensure that you are not exceeding safe limits of any one particular vitamin or creating potential negative interactions. For example, you may be taking vitamin E as a supplement not realizing that your multivitamin also contains E. The combination of the two may exceed the current recommended safe level of 400 IU. Be certain that you aren't getting too much of a good thing. • Eleanor E. Faye, MD, Ophthalmological Advisor, Lighthouse International Coast to Coast: Readers Share Insights on Driving and Vision Loss One of the most devastating consequences for people who become visually impaired is not being able to drive. Driving is a critical part of everyday life — enabling you to carry out daily tasks, keep an active social life and have control over how you get where you need to go. Even more, driving is a source of freedom, independence and self-worth. Over the years, many of you have shared feelings of frustration, despair and sadness about the difficult adjustment that follows giving up driving. In our last issue of Sharing Solutions, we told you about a grant that Lighthouse International's Arlene R. Gordon Research Institute received from the National Institute on Aging for a five-year study to better understand driving transitions among people with vision loss. This study is looking at current drivers who are visually impaired, with the goal of identifying what influences them to change their driving behavior or to stop driving; the psychological impact of these decisions; and the factors that make it more or less difficult to make the transition from driver to ex-driver. While the progress of this initiative will be shared in future issues of this newsletter, we asked drivers and ex-drivers to share their insights and experiences. What would lead current drivers to "give up the keys" and what emotional and practical consequences do they anticipate? We also were interested in the most important influences on people's decisions to stop driving, the psychological impact, and what has helped or hindered their adjustment. We received heartfelt responses from readers across the country. Here's what you had to say. Factors That Lead to "Giving Up the Keys" People who are still driving described changing where and when they drive in light of their vision problems. One individual stated, "I limit driving to non-rush hour times and I do not go very far." Others no longer take passengers, don't drive at night or in bad weather, or drive on less trafficked roads, avoiding major highways. What would make these drivers with vision loss stop driving? People shared the following comments: - "Advice from my ophthalmologist or close relatives and friends." - "When my vision deteriorates or I don't pass the vision test for license renewal." - "When I have a close call or car accident." They are apprehensive about the future, anticipating a difficult emotional adjustment, limited transportation alternatives and loss of independence should driving no longer be an option. Primary Influences on the Decision The decision to stop driving did not come easily for anyone. While numbers of people reported that they stopped on the advice of their eye doctor or family members, many came to the decision themselves. The most common reason was that they no longer felt safe and were concerned about the safety of others. One individual shared, "I never would forgive myself if I hurt someone else." Many people stopped driving because they noticed changes in their ability to see traffic signals, road signs and lane dividers. Others described difficulty with discerning signal colors or making out the hand signals of a policeman directing traffic. Some people had trouble keeping up with the speed of traffic or noticed that cars appeared suddenly in front of them as if coming from nowhere. One individual's jolt occurred when pedestrians on the side of the road suddenly became visible only as his car was nearly abreast of them; and, for another, sailing through an unseen traffic light scared her so badly that she never drove again. One man shared with a heavy sigh, "The probability of having an accident is high and the only way I can eliminate that risk is not to drive anymore." For many people, it took a near miss or even an accident to decide. One man gave up the keys after narrowly missing a bicyclist. And one woman shared a harrowing tale of driving in the wrong lane when two oncoming cars swerved to avoid her. She never drove again. Having a car accident was often a "wake-up" call — from fender-benders to actually hitting a bicyclist, who thankfully wasn't hurt. The Emotional and Practical Consequences of No Longer Driving Most everyone described the painful loss of independence. - "I was devastated. I felt like part of my life had come to an end." - "It's terribly hard to give up the independence I've enjoyed nearly all my life." - "It's the control over my own life that I lost." And it's this lost freedom that often triggers feelings of anger, helplessness, fear and depression. One individual commented, "I felt as if I slipped into a dark hole and went into a state of depression." Sometimes, the sense of despair grew out of concerns about being a burden to their family. No longer driving often means having to ask others to get where you want to go. Many people described how difficult it is to ask for and accept help, whether it's from a spouse, family member or friend. One woman shared, "I didn't like having to ask my husband." It's not surprising that a number of people commented on how grateful they are to friends and relatives who offer rides without being asked. People struggle with not being able to spontaneously go out when and where they want. Careful advance planning becomes necessary for shopping, appointments and social events. One woman said, "Being dependent on someone else to go anywhere, having to schedule appointments at others' convenience and not going anywhere alone all make a normal life difficult." Learning to be patient is easier said than done. One woman commented, "Since I stopped driving, I had to learn patience in dealing with the public transportation system." And for a man who relied on his wife, "Not always needing to be taken 'right now' has helped both of our dispositions." Making Adjustments Deciding to stop driving on one's own rather than having it imposed seemed to make a difference for many people. One person said, "Giving up driving was the hardest thing I ever did, but I did it on my own." One man shared, "It's easier to accept not driving since it was my decision rather than someone else taking the privilege away." Another woman reflected a similar sentiment, "It was best that I made up my own mind. My husband told me later that while he had concerns, he also had faith that I would stop when it was time." One individual sums it up well: "It's important to make the decision ourselves . . . not have the children take the keys away from us . . . to keep the control ourselves over the decision." Many people talked about the help received from spouses, relatives and friends. Several people kept their cars and hired drivers or asked family members to take the wheel. Others admitted that the adjustment affects more than just them. One man shared, "My wife has been supportive and understanding of this big change in our lives." Some people described how it helps when others openly acknowledge and genuinely empathize with how difficult it is to adjust to not driving. Others spoke about their support group and the benefits of sharing the loss and disappointment with people who are in the same situation. Living with a spouse or partner seemed to make the adjustment a little easier for some. This is not surprising considering many people's reluctance to reach out and ask for help. Yet, one woman commented, "People are kind . . . they take you where you need to go. People will help. We have to learn to ask." Many people felt that the availability of community-based transportation alternatives helped with their adjustment, and limited or inadequate resources made things difficult. While resources differed widely, options included transportation programs through local area agencies on aging, public bus services, low-cost senior taxis and various types of paratransit programs for people with disabilities. In fact, a couple of people reported that had they known about the transportation resources in their area, they might have stopped driving sooner. One woman moved to a community with a countywide door-to-door transit system. "It works great! A wonderful feeling to go alone, to go when I want to or need to, and it's only a phone call away." To Drive or Not to Drive . . . "Giving up driving was one of the hardest decisions I've had to face," is a comment that reflects the sentiments of many people. The decision, often made over time, usually comes after making adjustments on where and when to drive. While driving is one of the things that people miss most, they do adjust. One person shared, "I thought I could not live without driving but in time I adapted." People credit their adjustment to the thoughtfulness of others, the support of family and friends, and the availability of public transportation and paratransit programs. One woman shared, "The transportation service in my area helped enormously because it gave me independence." And regaining that lost freedom can make all the difference. l Thanks for sharing … Deanna Austin, Program for Visually Impaired Adults Support Group, IN; Gertie Bias, Affiliated Blind of Louisiana Training Center Support Groups, LA; Donald Blodgett, NH; Beverly Bookbinder, NJ; Betty Cain, Low Vision Support Group Max II, SC; Juleen Farnstrom, South Central Nebraska VIPS, NE; Chester Grabowski, IL; Janet Hargreaves, Sebastopol/Santa Rosa Macular Degeneration Support Group, CA; Judy, Eye Am Coping Support Group, MI; John McElheron, Lakeshore Seekers Support Group and Lake County Michigan Support Group, MI; Anne Moran, Eye Openers Brick/Point Pleasant Support Group, NJ; Connie Payne, Low Vision Support Group, MI; Shena Robinson, ME; Mary Rumman, Turner Geriatric Clinic Low Vision Support Group, MI; Linda Scribner, League for the Blind and Disabled Support Groups in Fort Wayne, Auburn, Decatur and LaGrange, IN; Marion Slacke, Focus on Eyes Support Group, NJ; Wilma Vencill, NE; Delores Wussler, Insight Support Group, FL To get in touch with people who shared their experiences, call Carol Sussman-Skalka at (800) 829-0500 or e-mail her at sharingsolutions@lighthouse.org. Sharing Solutions Cynthia Stuen, DSW Senior Vice President for Education Carol J. Sussman-Skalka, CSW, MBA Newsletter Editor Sarah Lloyd Director of Educational Publications Laurie Silbersweig Director of Editorial Services Jaine M. Schmidt Vice President of Creative Services Photos by Robert A. Lisak, Judith Moderacki This newsletter is available in alternate formats and on our Web site: www.lighthouse.org. To add your name to our mailing list,call (800) 829-0500 or e-mail us at: info@lighthouse.org. Lighthouse International Barbara Silverstone, DSW President and CEO Lighthouse International is a leading resource worldwide on vision impairment and vision rehabilitation. Through its pioneering workin vision rehabilitation services, education, research, prevention and advocacy, Lighthouse International enables people of all ages who are blind or partially sighted to lead independent and productive lives. Founded in 1905 and headquartered in New York, Lighthouse International is a not-for-profit organization, and depends on the support and generosity of individuals, foundations and corporations. Lighthouse International The Sol and Lillian Goldman Building 111 East 59th Street, New York, NY 10022-1202 Tel: (212) 821-9200 • (800) 829-0500 Fax: (212) 821-9705 • TTY: (212) 821-9713 www.lighthouse.org © 2005 Lighthouse International Printed on recycled paper J03334-S05/8M/4-05 Take Part in Our Next Coast to Coast The roles spirituality and religion play in helping people cope with life's challenges have received increasing attention in recent years. In our next issue of Sharing Solutions, we want to feature an exchange on your spiritual or religious experiences — and how they've affected your adjustment to vision loss. Discuss the following questions at your next support group meeting or with family and friends: - How has your religion or spirituality helped or hindered your adjustment to vision impairment? - What has your congregation or religious leader done to help you continue to participate in services and congregational activities? - What obstacles do you encounter, and how can congregations better help people with vision loss stay connected? Please respond by July 15, 2005, to have your responses included in the next issue. Call Carol Sussman-Skalka at (800) 829-0500, or e-mail her at sharingsolutions@lighthouse.org. You can also send letters or tapes to Carol at Lighthouse International, The Sol and Lillian Goldman Building, 111 East 59th Street, New York, NY, 10022-1202.