The Price is Right
Healthy Living with SCI: Free or Cheap Resources
When you left rehab, maybe you thought your crash course in bodily functions was over. Goodbye and good riddance, right? But now you have ... questions.
You're in luck-even if you're miles from the nearest rehab or find yourself catheter-rich but cash-poor, there are tons of resources available for free or cheap from rehab hospitals that have published grant-funded books, booklets, brochures and newsletters. Here are some of the best:
Craig Hospital
Pathways to Health: You Do Have a Choice ($7, 111 pages). This spiral-bound book is an entertaining, easy-to-read SCI manual covering stress, diet, exercise, fatigue and informed choice.
Taking Care of Yourself While Providing Care ($5, 204 pages). This thorough but reader-friendly paperback for caregivers-written by New Mobility contributing editor Richard Holicky-addresses stress, burnout, health problems, time management, and other issues related to long-term caregiving.
Brochures (free). Many of these titles are also at www.craighospital.org; printed brochures are available in both English and Spanish: Aching Shoulders?; The Art of Breathing; Colostomies: A Radical Approach to Bowel Management; Cutting the Fat; Exercise; Finding the Information You Need: Understanding Research; Fire Safety; Home Alone: Safety in the Home; H20 to Go!-Hydration; Incomplete SCIs: The Early Days; Incomplete SCIs: Down the Road; The Medicare Maze; Quality of Life: What's Important?; Reading Articles in Medical & Scientific Magazines; Skin: It's Too Much Pressure!; Personal Care Assistance: How Much Help Should I Hire?; Spirituality; Understanding Statistics-for the non-scientific reader; You Are How You Feel; Your Heart.
The following have an aging slant: Accepting New Help; Alcohol Abuse; Am I Ready for a Van?; Bladder Cancer; Breast Cancer; Caregiving; Changing or Choosing Your Doctor; Cholesterol; Diabetes; Fatigue; Interacting with Your Doctor; Long-term Caregivers; Medications; Optimal Health; Osteoporosis; Personal Care Assistants-How to Find, Hire, & Keep Them; Posture; Smoking: Your Lungs, Skin & Bladder; Spasticity; Switching to a Power Chair; Upper Extremity Pain; Weight Gain; You and Your Doc: Rights & Responsibilities.
WRAP (Wellness and Risk Assessment Profile) This online resource asks you specific questions, then compares your answers to information from other SCI survivors to calculate your risk for complications and recommend ways to increase your health and wellness. At www.craighospital.org, click on SCI Health Assessment.
Contact: Craig Hospital Research Department, 3425 South Clarkson St., Englewood, CO 80110; 303/789-8202; HealthResources@craighospital.org.
Spain Rehabilitation Center
The Spinal Cord Injury Information Network (free). This excellent Web site (www.spinalcord.uab.edu) offers a well-organized and indexed database containing hundreds of online articles, as well as links to other sites and references to in-print materials
Learning About Spinal Cord Injury (free download, $3 by mail). This very basic 20- page intro to SCI is for the true newbie.
Family Adjustment to Spinal Cord Injury (free download, $2 by mail). A primer for family members struggling with feelings and questions of their own, this 12-page booklet covers fear, depression and how to talk to the person who was injured.
Preventing Secondary Medical Complications: A Guide for Personal Assistants to People with Spinal Cord Injury (free download, $3 by mail). This is a great idea: a handbook for attendants with tips on keeping their employers healthy. The 23-page booklet covers skin, bladder, bowel, stretching, autonomic dysreflexia and more.
Pushin' On (free). This biannual newsletter covers topics like adjustment to SCI, relationships, independence and research.
Contact: University of Alabama at Birmingham Department of PM&R, Spain Rehabilitation Center, 619 19th St. South-SRC 529, Birmingham, AL 35249; 205/934-3283; rtc@uab.edu.
University of Washington
Spinal Cord Injury Update (free). This online newsletter, written for both professionals and consumers, covers health and research.
Brochures (free downloads). These pithy yet informative publications include: Staying Healthy after a Spinal Cord Injury; Taking Care of Pressure Sores; Maintaining Healthy Skin (Part I); Maintaining Healthy Skin (Part II); Taking Care of Your Bowels: The Basics; Taking Care of Your Bowels: Ensuring Success; Bladder Management; Urological Tests; Urinary Tract Infections: Intermittent Catheterization; Urinary Tract Infections: Indwelling (Foley) Catheter.
Contact: University of Washington Department of Rehabilitation Medicine, Box 356490, Seattle, WA 98195; 206/543-3600; www.depts.washington.edu/rehab/sci; rehab@u.washington.edu.
Santa Clara Valley Medical Center
Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury (free download). This useful 25-page booklet covers all the basics and includes sample applications, checklists and contracts.
Barriers and Bridges-SCI and Employment (free download). This 22-page booklet, a case study of 11 people with SCI and their quest for employment, lacks detail but has a few good tips on getting a job.
Freewheeling Guide to the Internet (free download). This 20-page booklet reviews 43 disability Web sites. Unfortunately, several listings have gone out of date in the year since it was published.
InterAct (free download of back issues). This newsletter features rehabilitation and research news, local resources and community events.
Contact: Santa Clara Medical Center, Rehabilitation Research Center for TBI & SCI, 950 South Bascom Avenue, Suite 2011, San Jose, CA 95128; 408/295-9896; www.tbi-sci.org; tbisci@tbi-sci.org.
The Miami Project
A Guide and Resource Directory to Male Fertility Following Spinal Cord Injury/ Dysfunction (free download, free by mail). With clear writing and explicit illustrations, this 32-page booklet covers erectile function, ejaculation, penile vibratory stimulation, semen quality and methods for achieving pregnancy.
The Project (free). This online newsletter covers cure research, fundraising and events three times a year.
Contact: The Miami Project to Cure Paralysis, Attn: Maria Amador, P.O. Box 016960 (R-48), Miami, FL 33101; 305/243-7108; www.miamiproject.miami.edu; mfp@miamiproject.med.miami.edu.
Shepherd Center
Spinal Column (free). This upbeat glossy magazine for Shepherd alumni and donors focuses mostly on disability lifestyle, SCI and MS, and much of it appeals to a national audience. At press time, Shepherd was planning to put the entire contents of Spinal Column online.
Contact: Shepherd Center, 2020 Peachtree Road, NW, Atlanta, GA 30309; 404/352-2020; www.shepherd.org.
Froedtert and Medical College Spinal Cord Injury Center
Alcohol, Drug and Prescription Medicine Use After SCI (free, English or Spanish). This nonjudgmental pamphlet includes a medication worksheet and pull-out reference page for tracking medications used and their effects when taken with alcohol.
Take it From Us: Strategies and Ideas About Going Back to School (free, English or Spanish). This pamphlet presents first-hand advice from students with spinal cord injuries about returning to school as a newly injured person.
Sexuality and Spinal Cord Injury (free). This 34-page booklet is a primer for beginning to explore this topic.
Contact: Spinal Cord Injury Center, Froedtert Memorial Lutheran Hospital, 9200 West Wisconsin Ave., Milwaukee, Wisconsin 53226; 414/259-3657; www.mcw.edu/spinal/index.htm.
Still can't find what you're looking for? Try the Institute for Rehabilitation and Research (713/799-5000), which has a more extensive list of free consumer publications, or the National Rehabilitation Information Center (800/346-2742; www.naric.com), which has a database of just about everything ever written on rehab and research.
*Information in boxes comes from Pathways to Health: You Do Have a Choice, by Kenneth A. Gerhart.
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