Research & Education: Some Good Information
Despite these advances, however, good information for people with SCI is at a premium. There just isn?t enough available for people who have finished rehab, are back in their communities, and are looking for ways to continue their good health.
For this reason, Craig researchers have spent the last three years, with grant funding from the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR), developing educational materials specifically for SCI survivors and their families. Following are some of the materials now available:
Pathways to Health: You Do Have a Choice. This spiral-bound handbook primarily targets people with SCI who are back in the community. It will be useful to people interested in making lifestyle choices and changes to preserve their health, regardless of length of injury. It's a fun, easy-to-read manual that provides information, activities, and points to ponder on health and wellness topics such as stress, diet, and exercise.
It costs $7; details are at the end of this article.
Free brochures. Order by mail or read them on the Web. Like the handbook above, all have been reviewed and tested by people with SCI. Printed brochures are available in English and Spanish, and more topics are "under construction." These newly developed topics are now available:
Colostomies: A Radical Approach to Bowel Management
Cutting the Fat
H2O to Go!—Hydration
Incomplete SCIs: The Early Days
Incomplete SCIs: Down the Road
The Medicare Maze
Quality of Life: What's Important?
Skin: It's Too Much Pressure!
Personal Care Assistance: How Much Help Should I Hire?
Online Health Assessment. If you haven't already found it on the Web, it's called the WRAP (Wellness and Risk Assessment Profile), and it asks some specific questions about you and your injury. It then compares your answers to those from other SCI survivors to calculate your risk for certain complications and to provide specific recommendations of things you can do to increase your health and wellness. To see or complete the WRAP on the Internet, enter www.craighospital.org, click on side bar option: SCI Health Assessment, and follow the on-screen instructions.
Taking Care of Yourself While Providing Care. This handbook targets those who care for and assist their family members and friends with SCI. It discusses stress, burnout, health conditions, and other issues that may face caregivers. The cost is $5.
How do you get these materials? If you are an Internet user, you'll be able to find the online health assessment by following the instructions above.
To get to the brochures, go to www.craighospital.org. Then, click on Health and Wellness on the sidebar. You can then click on Maintaining Your Health and Wellness, where you'll find a menu from which you can select topics that interest you. In the future, the two handbooks will be available on the Web as well.
To request a published copy of either handbook or printed copies of any of the brochures, contact Craig Hospital Research Department, 3425 South Clarkson Street, Englewood, CO 80110. (303) 789-8202 / HealthResources@craighospital.org.
These materials are provided and developed by Craig Hospital, which is responsible for their contents. This work was made possible by a grant awarded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research—a field-initiated dissemination project titled "Marketing Health Promotion, Wellness, and Risk Information for Spinal Cord Injury Survivors in the Community" (1998-2001). The opinions expressed in these materials do not necessarily reflect those of the U.S. Department of Education.
More Good Information
The University of Alabama-Birmingham (UAB) RRTC on Secondary Conditions of SCI is another resource for people looking for information. To use the UAB SCI Fax Information System, dial (205) 975-8376 from a combination phone/fax machine. The phone allows you to follow the voice menu options and press the number(s) of the document(s) you wish to receive. The fax machine allows you to receive the document(s).
"Fax ID: 124. Pushin' On" (Vol. 19, Issue 1). Newsletter focusing on RRTC research activities, health and wellness, and other issues. Specific topics include adjustment to SCI, relationships. Published twice annually; 8 pages.
"Fax ID: 101. SCI InfoSheet #1, Locating Information About SCI" (4 pages). Updated annually. For consumers with SCI and their caregivers.
"Fax ID: 102. SCI InfoSheet #2, Locating Information About SCI" (4 pages). Updated annually. For rehabilitation service professionals.
"Fax ID: 103. SCI InfoSheet #3, Sexuality for Men with SCI" (2000). Physical and psychological changes that can occur in men's sexual functioning following SCI.
"Fax ID: 104. SCI InfoSheet #4, Understanding SCI & Functional Goals" (2000). Overview of changes to the spinal cord after SCI. (Basic)
"Fax ID: 105. SCI InfoSheet #5, Understanding SCI & Functional Goals" (2000). Neurological and functional classification of SCI. For chart, see Fax ID 993. (Advanced)
"Fax ID: 113. SCI InfoSheet #13, Preventing Pressure Sores" (2000). Risk factors for skin problems, preventing and caring for pressure sores.
Each InfoSheet is four pages long. You will find them at www.spinalcord.uab.edu.
Research & Education: Some Good Information
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