NOTE: Books mentioned in Quest usually can be ordered through local bookstores or online. Reviewed books are not available through MDA.
The Spiritual Journey of Family Caregiving, by Sheryl Karas, 248 pages, 2008, $21.95 printed, $15 download. Healing Communication, www.healingcommunication.com, (831) 325-4076.
Karas, a psychologist and counselor, presents short bite-size chapters touching on aspects of caregiving. Together, they provide much advice and support for those caring for a loved one with a long-term debilitating medical condition. She touches on the key difficulties facing caregivers — exhaustion, mixed emotions, finding help. Much of the advice is practical, including some information on nutrition, meditation and spiritual insights.
A Family Caregiver Speaks Up: ‘It Doesn’t Have to Be This Hard,’ by Suzanne Geffen Mintz, 240 pages, 2007, $14.95. Capital Books, www.capital-books.com.
In her latest book, Mintz, president and co-founder of the National Family Caregivers Association, looks beyond the personal impact of caregiving to the societal and political implications. A revision of her 2002 Love, Honor, & Value, the new book draws on Mintz’ own experience as caregiver to her husband Steven, who’s had multiple sclerosis since 1974, and that of other caregivers. She explores the roadblocks encountered in health care, public policy and social support systems, even as the number of family caregivers is growing.
Citing progress made over the last two decades, Mintz nonetheless recognizes that caregivers are left to “wade through a patchwork sea of disparate programs” on their own. Services, health insurance coverage and financial breaks are hard to find, have waiting lists, differ from state to state and aren’t open to all family caregivers. More change is needed in order to fulfill the NFCA’s vision of health care, long-term care and social service systems in which family caregiving is a central component.
Mintz explains how a caregiver can take more control of his or her circumstances, thereby building confidence and abilities. Taking care of the caregiver’s health and asking for help are key components of that process, and Mintz offers many step-by-step suggestions for ways to accomplish both. If caregivers can find the time, they can learn more about caregiving issues, give their stories to the media, share experiences with others, and advocate change in state legislatures and Congress.
Extensive appendices cover resources, policy, health care and financial issues. This book paints a vivid portrait of caregiving and provides an excellent guide through the experience, as well as a broader view of ways that our society can better support those in the role that millions of us do or will play.
101 Accessible Vacations: Travel Ideas for Wheelers and Slow Walkers, by Candy B. Harrington, 352 pages, 2008, $24.95. Demos Medical Publishing, www.demosmedpub.com, (212) 683-0072.
Harrington, an expert on travel for people with disabilities, has added another volume to her stock of books filled with practical suggestions. The hundreds of destinations she lists range from cities to factory tours and special events. The listings describe accessible lodging and attractions and include further resources to contact. This book will help you get going and know what to expect.
Books by or about people with neuromuscular diseases
VICTORious Life, by Elizabeth Jamsa Gearhart, 80 pages, 2006, $20 softcover, $40 hardcover. Knowing Press, www.victoralvarezweb.com.
Victor Alvarez came to Comfort House in McAllen, Texas, at age 10. Separated from his parents, the boy with spinal muscular atrophy wasn’t expected to live long at the hospice facility. But under the loving care of staff and volunteers, he blossomed into a charming child and quickly proved wise beyond his years.
Scoliosis surgery extended his life; Victor grew into a talented artist and writer, a gifted student and an intuitive friend to others in the hospice. He’s now an outstanding college student. With many photographs and samples of Victor’s artwork, this book shows how lives can be changed with love and dedication. It received an Independent Book Publisher Award last year.
Disabled Christianity: Recognizing and Cultivating a Desperate Dependence Upon God, by Aaron J. Gunzer, 92 pages, 2007, $11.95 softcover, $6 e-book. iUniverse, (800) AUTHORS, www.iuniverse.com.
Gunzer, the oldest of three brothers with Duchenne muscular dystrophy, explores the losses brought about by his DMD through the viewpoint of his faith. He presents a Christian interpretation of eating, drinking, washing, walking, breathing, surgery and more. His thoughtful explorations, backed by scripture, show that he was strengthened by dependence on God rather than weakened by loss of independence. Gunzer died at 28, just before the book was published.
A Truck Fell on Me, by Charlie Renne, PublishAmerica, 135 pages, 2007, $19.95. PublishAmerica, www.publishamerica.com.
On his way home from a job interview, Renne met with the misfortune described in the title. The book describes his recovery, which was more complicated than the mending of broken bones. He believed for months that he had died or was about to die, the pain was excruciating, and he couldn’t sleep. He developed serious depression and post-traumatic stress disorder, as well as a constant ringing in his ears. During this period, his marriage broke up and his beloved dog was seriously injured. And the symptoms of his Charcot-Marie-Tooth disease worsened.
Renne relays this grim three-year ordeal with an efficiency of words and a thread of humor: In the emergency room, when the medical team is cutting off his suit, he thinks, “Damn! I look so fine in this suit.” Renne’s candor and wry outlook no doubt helped him survive, and they make the book enjoyable to read.
When Clowns Cry, by Frank Alexander Wray, 170 pages, 2007, $27. Trafford Publishing, www.trafford.com.
Another unusual autobiography, this book recounts Wray’s time in mental hospitals, resulting from a misdiagnosis after signs of a breakdown. In the hospital and under psychiatric outpatient treatment, he was prescribed heavy antipsychotic drugs that caused hallucinations, which the doctors attributed to schizophrenia.
Eventually he was helped to stop taking the drugs, and could focus on the physical pain, fatigue and heaviness in his limbs that earlier doctors thought were all in his mind. He was relieved to hear the diagnosis of congenital myopathy and other neuromuscular disorders, and has built a new life with people he can trust. Not always the easiest read, since it replicates Wray’s deluded mind during his psychiatric ordeal, the book shows the terrible consequences of an extreme case in which the stress of a physical disease was mistaken for mental illness. The clown of the title comes from Wray’s childhood experience of learning about circuses from his father.
Ways 4 Wheels Journal, by Miriam Allen, 70 pages, 2007, $10. momon4wheels.blogspot.com.
Allen, who has limb-girdle muscular dystrophy, helps others with disabilities examine their emotions and thoughts through this guide to keeping a journal. She provides questions to start users thinking and tips for journal keeping. The book also has pages for recording practical information about emergency contacts and medical history.
Hospitality Today: An Introduction, 6th ed., by Rocco M. Angelo and Andrew N. Vladimir, 560 pages, 2007, American Hotel & Lodging Association; and Selling the Sea: An Inside Look at the Cruise Industry, 2nd ed., by Bob Dickinson and Andy Vladimir, 340 pages, 2008, $40, John Wiley.
Quest travel writer Andy Vladimir, who has myotonic muscular dystrophy, has co-authored revisions of two of his books about the travel industry. Hospitality Today includes a page about ADA compliance, but is aimed at educating people interested in all aspects of the restaurant, hotel, casino and resort business.