Featured in this issue: Books by people affected by neuromuscular diseases include For the Love of Pete: The Story of Our ALS Journey by Marlene Hoyland Zaleski, whose husband died of ALS; The Samurai and the Mujahideen, a story set during the Soviet-Afghanistan war by Ben Dowling, who has Friedreich's ataxia; Shadows on the Ceiling: A Memoir of Disability and Abuse, a tale of a woman's experience with mental and sexual abuse by Susan D. Wheeler, who has CMT; and Tales of a Wounded Healer: Creating Exact Moments of Healing by Mariah Fenton Gladis, a long-term ALS survivor.
Other reviewed books include A Well-Balanced Tale: A Story About Disability, a children's book about a kangaroo with weak legs; Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t; Transition Strategies for Adolescents & Young Adults Who Use AAC; and Launching into Adulthood: An Integrated Response to Support Transition of Youth with Chronic Health Conditions and Disabilities
For the Love of Pete: The Story of Our ALS Journey, by Marlene Hoyland Zaleski, 2009, 156 pages, $20, Fairway Press, firstname.lastname@example.org.
What began as a coping mechanism for Marlene Zaleski — a journal of her husband Pete’s progression with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) — gradually morphed into a memoir of the couple’s life together, before and after Pete’s ALS diagnosis in 2000, up to his death in 2003. In addition to Marlene’s personal accounts, For the Love of Pete includes letters from Pete, as well as friends and family, and a short section of practical tips.
The Samurai and the Mujahideen, by Ben Dowling, 2010, 225 pages, $15.95, Sirena Press; to order: email@example.com
In this adventure set four years after the start of the Soviet-Afghanistan war, Toshi Ushido, a trained martial artist from Tokyo, and U.S.-Ranger-turned-smuggler Jack Randall, are hired by a wealthy Chinese businessman to assist the anti-communist Afghan rebels in their fight against the Red Army. Once there, they meet Mahmoud, who will guide both men toward the front lines of a war in which neither anticipated being involved. Author Ben Dowling, who has Friedreich’s ataxia, wrote this, his first book, using Dragon NaturallySpeaking software.
This is a poignant tale of one woman’s experience of sexual and mental abuse, and the challenges of living with a progressive disease. In spite of enduring what seem like insurmountable odds, Wheeler emerges from each setback with pluck and a will that is inspiring. Without being explicit, the book is honest while illustrating the statistical reality that individuals with disabilities are more vulnerable to abuse. Says Wheeler, who has Charcot-Marie-Tooth disease (CMT), “This book was difficult to write but I believe there is a need for a voice that can speak about disability and abuse in order to continue with the creation of accessible crisis centers and support programs.“
Tales of a Wounded Healer: Creating Exact Moments of Healing, by Mariah Fenton Gladis, 2008, 236 pages, $16, WindWhispers Press, www.wounded-healer.com.
In the opening chapter of her book, author Mariah Fenton Gladis writes: “ALS was a crash course in wisdom.” As a long-term survivor of amyotrophic lateral sclerosis — 29 years and counting — and still a practicing psychotherapist, she’s had plenty of time to leverage that wisdom. The book — an insightful read for anyone interested in self-improvement — isn’t just a biography, but a lesson in learning how to work through life’s difficult moments. In Tales, Gladis lays out the principles of her therapeutic techniques, adapted from the Gestalt therapy of psychiatrist Fritz Perls, and discusses case studies of clients who have benefited. Recently, the book was translated into Spanish as Historias de la Sanadora Herida.
A Well-Balanced Tale: A Story About Disability, by Amy Kaplan (illustrated by Chris Campbell), 2010, 41 pages, $17.20 or $8.95 download, Satsuma Press, www.lulu.com.
This children’s story is about a young kangaroo, Barnaby, who has weak legs and is unable to hop. His friends and family take him on a journey to meet various colorful members of the animal kingdom, seeking advice on how to get him moving. Things don’t seem to be going too well, until they meet a wizened dragon on the road. With themes such as curiosity, discovery, innovation and acceptance, this book for kindergarten and primary-school-aged children focuses on “difference and ability” rather than “fitting in and disability.”
Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t, by Viki Kind, 2010, 216 pages, $14.95, GreenLeaf Book Group Press, www.thecaregiverspath.com.
When your loved one is no longer willing or able to make their own decisions, how do you take it upon yourself to do what is necessary on their behalf, while simultaneously dealing with the difficult emotions that may arise? Using a trio of decision-making frameworks and other various tools, author Viki Kind hopes to guide the reader toward an answer. The book is written primarily for caregivers of someone with a developmental or mental impairment, or whose cognitive capacity is declining as a result of a disease such as Alzheimer’s; however, there are sections devoted to scenarios involving individuals who are capable — but do not desire — to make decisions.
Transition Strategies for Adolescents & Young Adults Who Use AAC, edited by David B. McNaughton and David R. Beukelman, 2010, 288 pages, $39.95, Brookes Publishing Co., www.brookespublishing.com.
Chapters include “Employment and Volunteer Programs,” “Living in Society” and “Relationships and Social Engagement.” Special emphasis is put on developing the kinds of advanced communication skills and scenarios that will be necessary as the youth transitions into a more independent lifestyle.
Launching into Adulthood: An Integrated Response to Support Transition of Youth with Chronic Health Conditions and Disabilities, edited by Donald Lollar, 2010, 240 pages, $44.95, Brookes Publishing Co., www.brookespublishing.com.
Navigating the various transition services — housing, education, employment, etc. — can be overwhelming. For this book, Donald Lollar, a research scientist in the field of disability and development, gathered a number of experts in the field to examine and explain the current system and suggest recommendations for improving and simplifying the transition process for adolescents with disabilities. The book is more like a textbook intended for policymakers and professionals in transition services, but is informative for families and individuals nonetheless.
|NOTE: Books mentioned in Quest usually can be ordered through local bookstores or online. Reviewed books are not available through MDA.|