NOTE: If your local bookstore doesn't have a book mentioned in Quest, usually it can be ordered through the store by providing the author's name, title and/or publisher. Often, books also can be ordered online. Reviewed books are not available through MDA.
A Wing and a Prayer: An Artist’s Journey with Muscular Dystrophy by Barb Misheck, 191 pages, 2007, $19.95, PublishAmerica, www.publishamerica.com.
Barb Misheck presents a lucid, thorough account of her life with limb-girdle muscular dystrophy that can accurately inform those with new diagnoses about challenges to come. Born in 1961, Misheck was using a wheelchair full time in her teens and underwent a tracheostomy at 27.
She fondly recounts a happy, adventurous childhood and youth in Ohio.
Her adult years have been fulfilling because of her extremely supportive family (a sister also has LGMD), her own management of her medical and daily care, her faith in God and her artistic talent (she paints in opaque watercolor and created “Blue Spruce,” featured on MDA holiday cards). (Editor's note: MDA no longer produces holiday cards.)
Equally candid about her joys and her difficulties, Misheck exemplifies what it means to live an independent life — with plenty of help from her friends.
The Margin by Marvin Wiebener, 437 pages, 2007, $13.95, Outskirts Press, www.outskirtspress.com.
It has nothing to do with neuromuscular disease, but this novel is an enjoyable page-turner. Wiebener, who has ALS, has cleverly constructed a mystery that combines ranching, European and American history, the FBI, murder, love and buried treasure.
Wiebener is a former corrections official and has drawn on his knowledge of criminals, crime-solving procedure, small-town Oklahoma life and much more to weave a good story. If you like G-rated detective fiction that isn’t too gritty or gory, this will entertain you for several relaxing hours.
Shadow Dawn by Mary Adelaide Robertson Webb and Frank Alexander Wray, 75 pages, 2006, $10.65, Trafford Publishing, www.trafford.com.
Mary Robertson and Robert Thomas Webb were married in 1898, and through the years Mary kept notes about her life. Now her great-nephew has pulled those writings together and created a journal of a year during their retirement.
Wray, who has muscular dystrophy and lives in Parksley, Va., is a writer who treasured his heritage of his great-aunt’s notes.
A former teacher, Mary held the traditional role of wife and helpmeet to her Southern Methodist pastor husband, whom she refers to as “Doctor Webb,” as they served their church, endured the deaths of their three sons in childhood, and met other hardships.
Wray has created Mary’s reminiscences with the gracious tone of the Old South. Notably, Robert Webb gave a sermon about “Father’s Day” in 1908 that “radiated throughout the Nation” and started the tradition of observing a day to honor fathers.
The Final Dance of Life: Our Journey with Judy by Elaine J. Clinger Sturtz, 192 pages, 2006, $12.99, Tate Publishing, www.tatepublishing.com.
Judy Shook and Elaine Sturtz were ministers at a Methodist church in Ohio who were becoming friends when devastating news hit. Judy had ALS.
Sturtz felt God’s call to become Shook’s primary caregiver and organize all of the day-to-day assistance and care planning she’d need for the next 15 months. The book traces their deepening relationship and the lessons of faith and ministry that the church community learned in seeing Judy through her ALS journey.
The book has a strong religious focus, but its lessons about friendship and community bypass theological issues.
Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families & Congregations by Erik W. Carter, 264 pages, 2007, $24.95, Paul H. Brookes Publishing, www.brookespublishing.com.
Carter, assistant professor in the Department of Rehabilitation Psychology and Special Education at the University of Wisconsin in Madison, focuses here on how religious congregations can break physical and attitudinal barriers to inclusion of worshipers with disabilities.
In language suitable to any faith, he emphasizes ways to create welcoming congregations and to support families of people with disabilities.
His advice is practical, with examples of successful efforts and detailed questionnaires to uncover barriers. While the book also explores religious education of people with cognitive disabilities, a great deal here applies to improving opportunities for those with physical disabilities to become part of faith communities.
Dignity for Life: Five Things You Should Know Before Considering Long Term Care Insurance by LTC Financial Partners, 34 pages, 2007, $8.95. LTC Financial Partners, (866) 471-4072, www.ltcfp.com.
“Long term care” translates here as “helping people who develop disabilities or chronic care needs.” It isn’t limited to the elderly.
Though the introduction says, “This is not an offer to sell long term care [ltc] insurance,” the book most assuredly promotes that product for most people. More significantly, it repeatedly advises readers to seek the advice of ltc specialists — the group of business-people-for-hire who comprise LTC Financial Partners.
Dignity does offer sound advice of the look-before-you-leap variety. The editorial direction of the book steers carefully to a predetermined course, however.
It’s suggested that people buy ltc coverage “to avoid the indignities of Medicaid.” Women are painted as a particularly vulnerable population because they typically live longer than their spouses and “can find themselves struggling to survive with depleted assets.”
Factual, yes, but readers will do well to read between the lines in gleaning helpful information.
A Wheelchair Rider’s Guide: San Francisco Bay and the Nearby Coast by Bonnie Lewkowicz, 208 pages, 2006, Coastal Conservancy Publications, free download from www.scc.ca.gov. Free from the San Francisco Convention and Visitors Bureau, (415) 391-2000, www.sfcvb.org.
This revision by Access Northern California, a travel information and consultation service, was written by a wheelchair user. Not a city guide, this fourth edition describes more than 100 sites along the shoreline of the San Francisco Bay and nearby Pacific coast, from Point Reyes to Santa Cruz.
It covers accessible restrooms, parking, picnic tables, playgrounds and more, as well as the attractions to be enjoyed.
Mayo Clinic Healthy Traveler: Answers on Staying Well When Away from Home, 32 pages, 2006, $5.95, Mayo Clinic, www.mayoclinichealthsolutions.com, (800) 291-1128.
This booklet covers the gamut from packing a first aid kit to avoiding bird flu when traveling, especially abroad. It doesn’t address disability issues, but its tips on preventive measures, reviewing health insurance coverage and choosing an air evacuation service ahead of time are useful for anyone.
Children with Disabilities: Sixth Edition by Mark L. Batshaw, M.D., Louis Pellegrino, M.D., and Nancy J. Rolzen, M.D., 832 pages, 2007, $74.95, Paul H. Brookes Publishing, www.brookespublishing.com.
This comprehensive volume is packed with information for professionals dealing with disabilities affecting children. Authored by dozens of experts, it begins with genetics and recounts how various childhood disabilities develop from conception through childhood.
Several neuromuscular diseases are among the many conditions described. Other chapters deal with interventions and care, such as physical therapy, technological assistance and helping the family cope.
This is an excellent reference for anyone interested in working with children with disabilities or in placing muscular dystrophy in a larger context.
A Health Handbook for Women with Disabilities by Jane Maxwell, Julia Watts Belser and Darlena David, 384 pages, 2007, $20, Hesperian Foundation, www.hesperian.org.
The Hesperian Foundation is a nonprofit publisher that promotes international, community-based health care. This book can be downloaded from the Web site at no cost or ordered in hard copy. It’s geared toward Third World countries where women and girls with disabilities endure great abuse and extensive barriers to social interaction, good health care and self-esteem.
Written at a simple level that attempts to discredit the myths and ignorance about disability that may exist even in health care workers, the book examines poverty and poor education as major barriers to health care. Basics regarding the body, puberty, nutrition and rights of citizens are covered, along with ways of finding support for disability needs.
Although most Americans don’t face such pervasive barriers, the book could serve young readers as a primer on assuring equal rights and health care for the disabled, and educate them about other cultures.