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Good Things to Read

This is a selected list of interesting and informative articles, books, and publications about spinal cord injuries.

A Guide for Persons with Disabilities Seeking Employment (Department of Justice-Civil Rights Division, Equal Employment Opportunity Center, Social Security Administration – 2000)

This guide, produced by the U.S. Department of Justice – Civil Rights Division, outlines your employment rights under the ADA, gives examples of reasonable accommodations and how to request one, and also answers questions regarding the parameters for filing a complaint if your ADA rights have been violated.

ABILITY Magazine

ABILITY Magazine, published by Time-Warner, is one of the leading magazine covering health, disability and human potential. From Diabetes to Spinal Cord Injury and celebrity interviews to CEO profiles, ABILITY covers the latest on Health, Environmental Protection, Assistive Technology, Employment, Sports, Travel, Universal Design, Mental Health and much more. Our writers include MDs, PhDs, JDs, best-selling authors, U.S. Senators and advocates. Cover interviews consist of Movie and TV Celebrities, Sports Figures, Business Leaders, Presidents, First Ladies and more.

 
Acute Management of Autonomic Dysreflexia: Individuals with Spinal Cord Injury Presenting to Health-Care Facilities (Paralyzed Veterans of America, 2001)

Autonomic dysreflexia (AD), with its sudden and severe rise in blood pressure, is a potentially life-threatening condition that can occur in anyone with a spinal cord injury at or above thoracic level six (T6). The resolution of AD requires quick and decisive treatment. Spinal cord medicine health-care providers are very familiar with the diagnosis and treatment of AD. However, because of the rapid onset of AD and the potentially severe symptoms, individuals with this condition are often rushed to the nearest health-care facility that may be staffed by health-care providers who have little or no experience in the treatment of AD. This is a free electronic publication.

 
Adapting Motor Vehicles for People With Disabilities (National Highway Safety Adminstration)

This is a brochure can be downloaded from the National Highway Safety Administration. It gives tips on adaptive technology for driving. Along with information on requirements, training, and adaptation costs, this publication contains advice on evaluating your need and choosing and maintaining a vehicle.

Back to School Success: Stories of Success on Campus by Stephanie D. Lollino (2015)

Going to college is a major life change for anyone, and it may present an especially daunting challenge for wheelchair users. This article from New Mobiity magazine provides helpful tips for transitioning to college and achieving a positive campus experience.

Disability & the Art of Kissing: Questions and Answers on the True Nature of Intimacy (Life on Wheels Press, 2006)

Disability awareness author and speaker Gary Karp explores the subject of sexuality in a way that is touches upon many common concerns of people living with spinal cord injury. Disability & the Art of Kissing is a collection of conscise responses to essential questions about intimacy and sexuality in the context of disability touching upon the universal nature of love.

Disability Etiquette (United Spinal Association)

This pamphlet, designed by the United Spinal Association, is a great resource for businesses, schools, organizations, staff training and disability awareness programs. You don’t have to feel awkward when interacting with, or when you meet a person who has a disability. This booklet provides tips for you to follow that will help create positive interactions and raise everyone’s comfort levels.  

Early Acute Management in Adults with Spinal Cord Injury: a Clinical Practice Guideline for Health-Care Professionals (Paralyzed Veterans of America, 2008)

This Clinical Practice Guideline was created by Consortium for Spinal Cord Medicine.  It was designed to guide health care professionals in trauma centers, ICUs and hospitals in providing care during the first 72 hours after spinal cord injury.

 
Eat Well, Live Well with Spinal Cord Injury: A practical guide to help individuals with spinal cord injuries address secondary health complications in SCI through nutrition (2013)

It is common for individuals with spinal cord injuries to experience multiple nutritional deficiencies. Eating the right foods becomes even more crucial to meet your body’s increased nutrient needs fight after injury, during rehabilitation and throughout your life. Funded by the Paralyzed Veterans of America, Eat Well, Live Well with Spinal Cord Injury is a comprehensive, practical nurtritional guide written specifically for individuals with spinal cord injuries, as well as their families, friends, caregivers, health and medical professionals.

Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities, Klein, Erica Levy and Ken Kroll. (No Limits Communication, 2001)

Although originally published in the 1990s, nothing about “Enabling Romance” seems out dated. Written by a couple who has been there, this book is an illustrated guide to intimacy and sexual expression for people with disabilities. It comes highly recommended by professionals in the field of spinal-cord injury, as it debunks the myths of sexuality in people with disabilities.

Ending Life: Ethics and the Way We Die, (Oxford University Press, 2005).

Margaret Pabst Battin has established a reputation as one of the top philosophers working in bioethics today. This work is a sequel to Battin’s 1994 volume The Least Worst Death. Battin’s new collection covers a remarkably wide range of end-of-life topics, including suicide prevention, AIDS, suicide bombing, serpent-handling and other religious practices that pose a risk of death, genetic prognostication, suicide in old age, global justice and the “duty to die.” It also examines suicide, physician-assisted suicide, and euthanasia in both American and international contexts.

Far From The Tree: Parents, Children And The Search For Identity, Andrew Solomon. (Scribner, 2012)

From the National Book Award–winning author of The Noonday Demon: An Atlas of Depression comes a monumental new work, a decade in the writing, about family. In Far from the Tree, Andrew Solomon tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so. Solomon’s startling proposition is that diversity is what unites us all.

Fire Safety for Wheelchair Users by the United Spinal Association

This online consumer education booklet gives important tips for spinal cord injury survivors and families in ways to handle situations before and during a fire. It also addresses fire prevention within homes. The tips are a model that can be modified and adjusted to fit varyous types of homes and structures. 

From There to Here: Stories of Adjustment to Spinal Cord Injury, Ed. Karp, Gary and Stanley D. Klein, Ph.D (No Limits Publications, 2004)

“From There to Here: Stories of Adjustment to Spinal Cord Injury,” is made up of forty-five personal essays by people with spinal cord injuries. It is designed to bring hope, but not by inspiration, as it illustrates the real and complex process of how people respond to sudden and overwhelming change. The heart of these stories is what happened in between–the actually journey to adjustment, acceptance, meaning and possibility–the journey to “Here.”

Haloman: A Memoir of Survival Against All Medical Odds, Goodfried, Alan (Createspace, 2011)

“Haloman: A Memoir of Survival Against All Medical Odds,” is Alan Goodfried’s story of waking up in hospital after eight days of being in a medically induced coma. He neither has memory of falling and breaking his neck nor of the risky and life threatening neck surgery that followed. No stranger to medical adversity, his discovery of what’s happened to him is the beginning of his struggle – against all medical odds – to insure that his life isn’t shattered by this traumatic injury.

In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Inter-abled Romance (Beacon Press, 2018).

In this chronicle of will and hope to be released in January 2017, Ben Mattlin demystifies the inter-abled relationship, showing that it should be a matter neither of wonder nor of pity. This is an urgent, deeply felt, and sometimes hilarious account of marriages that feel as obvious to those within them as they do bewildering to many people outside them. Mattlin gives us a testament to the deep humanity that can manifest in any kind of body, and to the passionate love such humanity can provoke in others.  

Is Fred Dead? A Manual on Sexuality for Men with Spinal Cord Injuries, Robert W. Baer, Psy.D. (Dorrance Publishing Co., March 2004)
Robert W. Baer, Psy.D., offers detailed and useful information for resuming sexual relations and developing an increased level of intimacy. Sexual anatomy is discussed, as is the sexual response cycle, erectile dysfunction, fertility techniques, positions, and sexual aids.
Journal of Spinal Cord Medicine

The Academy of Spinal Cord Injury Professionals provides this selection of free articles from the “Journal of Spinal Cord Medicine” (JSCM). Here you’ll find articles and updates on the latest medical research and findings regarding Spinal Cord Injury.

Letters to Sam: A Grandfather’s Lesson on Love, Loss, and the Gifts of Life, Sam Gottleib (Sterling, 2006)

In the tradition of such bestsellers as “Tuesdays with Morrie” and “Riding the Bus with My Sister,” this is touching inspirational collection of letters from a grandfather to his grandson. The author, who has quadriplegia, feared that he might not live long enough to see his newborn grandson, Sam, reach adulthood. However, when Sam, only 14-months-old, was diagnosed with Pervasive Developmental Disability, a form of autism, suddenly everything changed.

Life on Wheels: The A to Z Guide to Living Fully with Mobility Issues (Demos Medical Publishing, 2009)

Disability awareness author and speaker Gary Karp provides a comprehensive guidebook for people with mobility disabilities – Life on Wheels. It’s written in an affirming tone that helps people pursue their true, full potential. Candid discussions and tips regarding rehabilitation, healthy disability, the experience of disability, wheelchair selection, intimacy and sex, spinal cord research, home access, and getting out their are presented in an easy to understand way with good humor and useful insight.

Male Fertility Following Spinal Cord Injury: A Guide for Patients, Second Edition from the Miami Project
This online booklet, created by the Miami Project’s Male Fertility Research program, provides information about changes in male sexual function and fertility that may accompany spinal cord injury (SCI), and outlines the options available to deal with such changes.
 
Mayo Clinic Guide to Living with a Spinal Cord Injury: Moving Ahead with Your Life, The Mayo Clinic (Demos Health, 2009)

This book was developed by leading Mayo Clinic experts, and covers a wide variety of spinal cord injury related topics such as emotional adjustments, sexuality, skin care, and adaptive equipment . This independence-granting book encourages readers to resume their favorite hobbies, participate in athletic activities, and return to the workplace quickly and safely.

 

Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity (Skyhorse: 2012

Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital muscle weakness from which he was expected to die in childhood. Not only did Mattlin survive, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel he was disadvantaged at all, merely different.

Miracle Boy Grows Up is a witty, unsentimental memoir you won’t forget, told with engrossing intelligence and a unique perspective on living with a disability in the United States.

Nerve Transfers In Patients With Spinal Cord Injury Educational Packet
Cervical level spinal cord injury can significantly affect hand function. Depending on the level and type of injury, surgery to improve hand and arm function may be an option. Surgical treatment may include nerve transfers or other procedures. To help you understand the treatment options and what to expect, The Univeristy of Washington in St. Louis prepared this handout.
New Mobility Magazine

This is the website for the magazine, “New Mobility.” Its mission is to encourage “the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy.” The site offers current news updates, feature articles, and book recommendations.

 

Preservation of Upper Limb Function Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals by Paralyzed Veterans of America (2005)

This free online guideline is designed to educate health-care professionals and persons with spinal cord injury on the risk of upper limb pain and injury, including recommendations for assessment, management, and monitoring. Published by Paralyzed Veterans of America on behalf of the Consortium for Spinal Cord Medicine.

Rescuing Jeffrey: A Memoir, Galli, Richard (St. Martin’s Griffin, 2001)

On July 4, 1998, the lives of the Galli family changed forever when their 17-year-old son dove into a pool, and broke his neck. “Rescuing Jeffery,” is a father’s first-person account of the first 10 days following his son spinal cord injury, which resulted in quadriplegia. He and his wife weigh the option of ending their son’s life, as he had become ventilator-dependent. This book will strongly point out that possibility, but, more importantly, it reinforces the strength of the human spirit, the will to live, and the compassion of one’s friends and neighbors.

Respiratory Management Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals by Paralyzed Veterans of America (2005)

This free online guide, created by the Consortium for Spinal Cord Injury Medicine, answers many of the questions about respiratory health that may arise after a spinal cord injury. 

Scientists Make Paralyzed Rats Walk Again After Spinal Cord Injury: University of California, Sept. 21, 2009

This article details a discovery made by UCLA researchers that might be a step toward improved rehabilitation for people with Spinal Cord Injury. In their tests, researchers have found that, with administration of drugs and electrical stimulation, they can cause paralyzed rats to walk and bear their weight while guided on a treadmill.”

Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline by Paralyzed Verterans of America for Health-Care Professionals (2010)

Created by the Consortium for Spinal Cord Medicine, “What You Should Know” explores a range of topics related to sexuality and sexual function after spinal cord injury. The guide was developed with the belief that all people who want to be sexually active after Spinal Cord Injury should have the knowledge they need to make that decision and be comfortable with their sex life whatever their level of injury. With straightforward facts and discussions of the wide range of topics affecting sexuality, the guide not only provides current medical information but can serve as a tool for making the conversation about sexuality after Spinal Cord Injury easier to have. 

Spasticity and Spinal Cord Injury

Spasticity is the uncontrolled tightening or contracting of the muscles that is common in individuals with spinal cord injuries. About 65%–78% of the SCI population have some amount of spasticity, and it is more common in cervical (neck) than thoracic (chest) and lumbar (lower back) injuries.

Spinal Cord Injury and the Family: A New Guide, Alpert, Michelle J. MD, Cindy Purcell, Ted Purcell and Saul Wisnia (Harvard University Press, 2008)

Physiatrist Dr. Michelle Alpert’s clinical experience with patients’ own stories, “Spinal Cord Injury and the Family” is for individuals and their families who must climb back from injury: for the young quad couple, both quadriplegic, who wish to conceive and raise a child; for the paraplegic dad who wants to teach his daughter to drive. Dr. Alpert is the Director of Rehabilitation Medicine, Hebrew Rehabilitation Center, and Clinical Instructor in Physical Medicine and Rehabilitation, Harvard Medical School. She was the founder and first director of the Spinal Cord Injury Program at Spaulding Rehabilitation Hospital.

Spinal Cord Injury: A Guide for Patients and Families, Dobkin, Bruce M.D. and Michael Selzer M.D (Demos Health, 2008)

This well-written, reliable overview of traumatic spinal-cord injury and its treatment is essential reading for all patients, family members, and caregivers who want a better understanding of the condition. In simple, everyday English, it explains the anatomy of the spine, the results of injury, and treatment and management issues encountered during rehabilitation. A glossary of commonly used terms and website resources offer tools for further study, while the latest scientific research helps patients make informed medical decisions that promote optimum healing.

Spinal Network: The Total Resource Book (Leonard Media Group, 2009)

“Spinal Network” is the essential resource for making important life choices after a spinal cord injury, multiple sclerosis, post-polio syndrome, amputation, ALS and other conditions. This information-packed book explores options in health, technology, attendant services, employment, travel, sports, relationships, sexuality and parenting. It explains–in clear language–the intricacies of legal rights, government benefits and cure research. 

Sports ‘N Spokes by Paralyzed Verterans of America

SPORTS ‘N SPOKES is a bimonthly print and online magazine produced by the Paralyzed Veterans of America. S’NS reports on competitive sports and recreation for wheelchair users. Since 1975, S’NS has been a leader in wheelchair sports coverage and currently goes to more than 43 countries worldwide. SPORTS ‘N SPOKES is committed to providing a voice for the wheelchair sporting and recreation community.

StemBook by Harvard Stem Cell Institute, Harvard University

StemBook is an online collection of original, peer-reviewed chapters on various aspects of stem-cell biology written by top researchers in the field at the Harvard Stem Cell Institute and worldwide. This is the place to find serious, in-depth scholarly research. Stem Book is aimed at stem cell and non-specialist researchers.

 

The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life, Allen Rucker. (HarperCollins, 2008)

The Best Seat in the House is Rucker’s unpretentious, unapologetic, refreshingly comic, and powerfully heartfelt paean to life and its fragility, and to the resilience and adaptability of a single, normal, very funny human being.

The Least Worst Death: Essays in Bioethics on the End of Life, (Oxford University Press, 1994).

This book, written by Margaret P. Battin, one of the foremost experts on issues involving death and dying, offers insight into the controversial and often difficult topics of withdrawing and withholding care, euthanasia, and suicide. An extensive introduction identifies the principal ethical issues, and the book explores such dilemmas as rationing health care for the elderly, whether there is a “duty to die,” counseling in rational suicide, the risks of abuse with active euthanasia, religious views about suicide, whether suicide can be understood as a fundamental human right, and others.

 

Today’s Caregiver Magazine

The website for Today’s Caregiver Magazine offers helpful online resources. Newsletters, back issues of magazines and group forums can be accessed here. A unique feature, this site offers a kitchen guide for caregivers, complete with recipes and articles.

 

Understanding Spinal Cord Injury – Two Part Series

These factsheets are intended to be a starting point for understanding the normal functions of the spinal cord and how those functions might change after spinal cord injury (SCI). The impact of injury is different for everyone, so it is impossible to answer every question of interest. However, these fact sheets will answer a few common questions.

While it is not possible to teach you all there is to know in a single handout, these two factsheets include some of the most important information.

United Spinal Association Publications

This webpage offers publications that are available for free download covering a variety of topics related to spinal cord injury, including disability etiquette, mobility options, accessible air travel, fire safety for wheelchair users, the american’s disability act, fair housing amendment acts, and other advocacy booklets.

 

We Can Go Anywhere: My Adventures on Daddy’s Chair, Glen Dick. (Black Rose Writing, 2016)

In this beautiful example of a child’s innocence we are taught that a little imagination can take us a long way. What the rest of the world sees as a limitation becomes a great source of adventure and freedom. Little Elaina shows her dad there is much more to him than meets the eye, and in the process proves that love knows no limitations.

Why I Burned My Book and Other Essays on Disability, Paul K. Longmore. (Temple University Press, 2003)

This wide-ranging book shows why Paul Longmore is one of the most respected figures in disability studies today. Understanding disability as a major variety of human experience, he urges us to establish it as a category of social, political, and historical analysis in much the same way that race, gender, and class already have been. The essays here search for the often hidden pattern of systemic prejudice and probe into the institutionalized discrimination that affects the one in five Americans with disabilities. 

Yes, You Can!: Guide to Self-Care for Persons with Spinal Cord Injury, 4th ed., Ed. Burns, Stephen P., M.D and Margaret C., M.D. Hammond. (Paralyzed Veterans of America, 2009)

Published by the Paralyzed Veterans of America, ‘Yes, You Can!,” is designed for both the newly injured patient, and their family members. Written by experts in the field of spinal-cord injury, it is an extremely popular guide to subjects such as: self-care, sexuality, pain management, substance abuse, exercise, alternative medicine, adaptive equipment, and staying healthy.

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities, Stanley D. Kline and Kim Schive (Kensington, 2001)

This book of personal stories of parents of children living with a disability complied by Stanley D. Kline and Kim Schive.

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