These websites provide consumer education sheets on care and medical information for individuals with spinal cord injuries. Here you’ll find family-friendly material on subjects ranging from caregiving, coping, and adjustment, to medical information on skin care, bladder and bowel care, tips for returning to work and selecting a wheelchair, and other pertinent information. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly.
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.
For people with spinal cord injuries, adaptive sports and recreation may be key to lifelong wellness. Without such activity, people with spinal cord injuries maybe be at higher risk for physical and mental health problems, such as obesity, heart disease, and depression. Read this factsheet to learn more about the health benefits of adaptive sports and recreation after spinal cord injury.
Having a spinal cord injury is without doubt a new and challenging situation. SCI affects almost every aspect of your life when it happens, and it can be hard to put life back in order and adjust to living with SCI. This initial adjustment period may be hard, but most people adjust well in time. Then, they continue to adjust to ongoing changes in life similar to those that everyone experiences.
Founded in 1931 as the Harvey Cushing Society, the American Association of Neurological Surgeons (AANS) is a scientific and educational association with over 8,000 members worldwide. The AANS is dedicated to advancing the specialty of neurological surgery in order to provide the highest quality of neurosurgical care to the public. The Patient Information tab on the main toolbar, provides a wide range of consumer information onConditions and Treatments.
ASIA establishes and promotes standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life. One of ASIA’s primary missions is to educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual’s potential for full participation in all areas of community life. The Public Information link on the left toolbar provides a variety of consumer education information on durable medical equipment, clinical trials, and general guidelines for selecting SCI rehabilitation programs.
The ASIA impairment scale classifies motor and sensory impairment that results from a Spinal Cord Injury. It divides spinal cord injuries into 5 categories, A-E, with optional clinical syndromes.
The ASIA Impairment scale is another helpful guide to understanding an injury, It was developed by doctors at the American Spinal Injury Association (ASIA) to categorize the extent of an injury in terms of the degree of damage to the spinal cord.
If the injury is “complete,” (ASIA A) it means that no messages can travel across the location of the injury to the brain. However, “incomplete” injuries, which mean that some messages can still get through, are classified as ASIA B, ASIA C or ASIA D, depending on amount of movement and feeling that remain below the level of the injury.
Autonomic Dysreflexia (AD), sometimes referred to as Autonomic Hyperreflexia, is a potentially life-threatening medical condition that many people with spinal cord injury experience when there is a pain or discomfort below their level of injury, even if the pain or discomfort cannot be felt.
It is important to become knowledgeable about Autonomic Dysreflexia (AD) if you have a spinal cord injury at the T6 level or above. AD can cause a medical emergency and even be life threatening. This emergency wallet card provides crucial information regarding Autonomic Dysreflexia for spinal cord injury survivors, their family, and emergency response professionals. There are two versions; an adult card in dark blue and a pediatric card in light blue — please note the difference in the medication dosages.
Learning to advocate for yourself or loved one is an important step in coping with a disability or chronic illness. This consumer education sheet from the Rehabilitation Institute of Chicago provides some basic tips to help you and others gain a sense of empowerment.
A spinal cord injury might limit one’s ability to control urine. One might not be able to stop urine from flowing, or might not be able to release it. Uncontrolled urination or inability to empty your bladder can have a negative effect on quality of life, cause bladder and kidney infections and other problems. Appropriate bladder management can help keep bladder and kidneys healthy.
A bowel program can help one to control bowel movements after a spinal cord injury. Following a bowel program can help someone avoid other problems and perhaps bowel surgery. It is a plan to retrain one’s body to have regular bowel movements. A doctor or nurse designs a bowel program specific to an individual based on health, personal history, a physical examination and other factors.
Sponsored by Newsome Melton, LLP, BrainandSpinalCord.org is a resource to help brain and/or spinal cord injury survivors and their families learn more about medical conditions, rehabilitation, and legal options that can support long-term financial stability.
Depression is not an inevitable part of living with SCI though many in the SCI population – about one in five people – may experience this. This consumer education sheet describes depression, its causes, symptoms, and treatment. A depression self-test is also included to help one understand the extent of their depression and potential concern to get help. This education sheet can also be downloaded in Spanish.
One may be able to continue driving safely again, depending on how serious the injury is and how much function has been regained. The amount of time after an injury is a major factor in deciding whether and how one can return to driving. With time, one may regain some functions that could make driving possible. With time, the amount and cost of any needed special equipment may be reduced.
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.
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 nutritional guide written specifically for individuals with spinal cord injuries, as well as their families, friends, caregivers, health and medical professionals.
Most people with spinal cord injuries (SCI) want to work yet need support, training, and vocational rehabilitation services to help them obtain and keep a job. This consumer education sheet identifies sources of support that may help to overcome many barriers that are outside the individual’s control, such as financial and health care issues, accessibility, and employer attitudes.
People with spinal cord injuries are more likely than the general population to have health problems related to weight gain, changes in cholesterol, and high blood sugar. People with spinal cord injuries are also at higher risk of cardiovascular disease and not being active may contribute largely to these problems. Read this factsheet to learn more about the possible health benefits of exercise after spinal cord injury.
The Florida Spinal Cord Injury Resource Center (FSCIRC), established in January 1994, serves as the statewide clearinghouse of spinal cord injury resource information for persons living with SCI, their families and friends, healthcare professionals, support groups, the media, and the general public. Click on Resources on the top toolbar to view A-Z Resources for spinal cord injury.
The Greater Boston Chapter of the National Spinal Cord Injury Association is a 501 (c) (3) organization working to reach, inspire, support and empower individuals and their families affected by spinal cord injury and paralysis throughout Massachusetts. GBC provides access to resources, vital information, peer visitors, advocacy and educational information. From the moment of injury, GBC provides one-on-one services to the newly injured and those around them as they learn to cope with dramatic change and adjust to post-injury life. Although the GBC is based in Massachusetts, their website is a great resource for everyone. Their nationally recognized Peer Visitor and Mentor Program provides positive role models to those who are newly injured and their families.
HealthFinder.gov has resources on a wide range of health topics selected from over 1,600 government and non-profit organizations. This government website is designed to help you and those you care about stay healthy. Health Topics A to Z provides information on health conditions and diseases, nutrition and physical activity, doctor visits, everyday healthy living, pregnancy and parenting.
It is natural to be worried and overwhelmed when needing to hire someone for help with personal care. This consumer education sheet from the Shirley Ryan AbilityLab LIFE Center, can help you better understand how to start, what to ask, and how to know if someone will provide what is needed. Pros and cons for using a home health care agency, employment agency, or hiring a caregiver on your own are outlined along with caregiver interviewing tips.
The LIFE (learning, innovation, family, empowerment) Center at the Shirley Ryan AbilityLab is a premier family and professional resource center designed to support the life-long needs of people with disabilities, their families, and the community. The LIFE Center’s extensive consumer education and community resources, spans over 7,000 peer reviewed sources of help centered on key life needs for families and individuals living with a spinal cord injury. The online collection includes local, regional, national, and international agencies and extensive consumer education sheets. Topics include medical information and care, caregiving and equipment, housing and transportation, education and employment, support and wellness, recreation and leisure, finance and law, and inspiration and hope. Links to support groups, government disability programs, home care, medical equipment, and other assistive technology providers are also provided.
Taking time to outline your interests regarding the type of treatment you would like or would not like, along with identifying someone whom you trust to oversee your care will help ensure that your wishes are attended to in the event you are not able to communicate for yourself. This consumer education sheet is provided by Nolo.com; one of the Internet’s leading legal websites. This overview describes what’s involved and why it is important to prepare Living Wills and Powers of Attorney for Health Care, who can make the health care documents, when it takes effect and when it ends, and how the documents can be revoked. This website provides additional information on a variety of aspects of advanced care planning to ensure your wishes are directed according to your desires.
Wheelchair maintenance can reduce wheelchair breakdowns and related consequences, as well as costs for repairs and replacements. This guide provides basic details on inspecting and maintaining wheelchairs.
The Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. Their spinal cord injury resource page outlines the basics of Spinal Cord Injury and important information on initial treatments and rehabilitation. Click on Coping and Support to find resources and information on living with a spinal cord injury.
MedicineNet.com is an online, healthcare media publishing company. It provides easy-to-read, in-depth, authoritative medical information for consumers via its robust, user-friendly, interactive website. Their Spinal Cord Injury Treatment and Rehabilitation section provides basic, trustworthy medical information.
MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations to give easy access to medical journal articles, information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news. The section on spinal cord injuries provides specific information on diagnosis, tests, prevention, and treatment as well as videos and tutorials, statistics and research, clinical trials, and journal articles.
In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is a comprehensive spinal cord injury research center, housed in the Lois Pope LIFE Center, a Center of Excellence at the University of Miami Miller School of Medicine. The Miami Project’s international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury. The website’s Living with Paralysis section provides provides exceptional consumer education on Spinal Cord Injury 101, Care and Resources,Experimental Treatments, Webinars, and Statistics. The Healthy Living section provides additional information on diet and nutrition, exercises, sports and leisure, and stretching.
The Michael Brent Resource Center at Frazier Rehabilitation Institute was established in 2010 to address the needs of individuals and their families from the onset of spinal cord impairment and continuing throughout the life cycle. Its mission is to provide a central location where educational books, DVD’s, CD’s, pamphlets and other educational materials are housed for inpatient, outpatients, families, staff, students and others to come and learn about spinal cord impairment. The Center also provides a location for inpatients, outpatients and those in the community to meet and network with the agencies that serve them.
The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs and develops systems for sharing information for the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) model systems programs in traumatic brain injury, spinal cord injury, and burn injury. The Spinal Cord Injury tab at the top takes you to a page with a listing of what the website has to offer, including factsheets, slideshows, and hot topic modules as well as quick reviews of research that is funded by the NIDRR, and a database of research publications from the Model Spinal Cord Injury Systems since 1991.
The National Rehabilitation Information Center (NARIC) is the library of of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). This extensive collection includes all articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDILRR. Disability Resources are additionally arranged by subject to help patrons find agencies, organizations, and online resources for treatment, benefits, and services.
This website was created by the Fick & May law firm as a source for understanding legal issues associated with brain and spinal cord injuries. This site is also provides information on the anatomy of the spinal cord and some of the injuries that can affect it. The interactive map of the spinal cord is a comprehensive tool for finding basic information concerning specific parts of the spinal cord and the effects of injuries to those parts.
The United Hospital Fund, which is based in New York, created this website to help improve patients’ transitions to different types of care facilities. The site is packed with resources for every step of caring for a loved one, from hospital admission to discharge and beyond which apply regardless of your location. The online Family Caregiver’s Guide to Care Coordination helps family identify ways to work together with professionals with tips on staying organized, especially when professional care ends.
Pain is a serious problem for many people with spinal cord injuries (SCI). Pain after SCI can occur in parts of the body where there is normal sensation (feeling) as well as areas that have little or no feeling. The pain is very real and can have a negative impact on quality of life. A person in severe pain may have difficulty carrying out daily activities or participating in enjoyable pastimes. Follow this link to learn more about the different types of pain many experience after SCI, and the ways it is can be treated.
The PVA’s mission is to improve the quality of life of its members by advocating for improved health care, research, education and awareness of disability rights and programs for veterans. The website focuses primarily on injured veterans; however, the information on disability rights and sports and recreation applies to veterans and non-veterans alike.
This section, found on the Craig Hospital website, offers suggestions on how to deal with a personal care assistant (PCA). There are tips on saving money, organizing and evaluating your needs and tips on keeping your PCA happy and responsible.
This consumer education sheet, developed through the Medical University of South Carolina’s Office of Research, discusses key points for finding, interviewing, educating, and training a personal care attendant (PCA). It also outlines top 10 reasons why PCAs quit their jobs with helpful hints for developing a positive working relationship.
Having a spinal cord injury (SCI) does not affect your ability to naturally become pregnant, carry, and deliver a baby, so your decision to have children is made in much the same way as anyone else. You consider the demands and challenges of parenting and how you might manage them. Here are other facts to consider when deciding whether or not you want to have children.
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.
A spinal cord injury can impact the respiratory system. Signals sent from your brain can no longer pass beyond the damage to the spinal cord, so your brain can no longer control the muscles that you would normally use for inhaling and exhaling. The extent of your muscle control loss depends on your level of injury and if there is complete or incomplete spinal cord damage.
Transferring in and out of a wheelchair puts higher stress on arms and shoulders than anything else one may do on a regular basis. Learning the correct way to transfer is extremely important in order to keep arms functioning and pain-free. This fact sheet from the Model Systems Knowledge Translation Center is also available in Spanish.
SciTrials.org is a website designed to provide up-to-date and user-friendly information about spinal cord injury clinical trials.
It enables individuals to:
Search via location, injury details, therapies and outcomes
Receive email updates on new trials of interest to them
Find answers for the most common questions about trials
Have the clinical information distilled into everyday language
Applying quickly and directly to the trials from the web site
Additionally, it is for Investigators to help increase recruitment requests for their respective trials. It aims to balance the needs of both communities, resulting in more people participating in trials, and trials having more candidates to find better matches.
Loss of muscle movement, sense of touch, and sexual reflexes often occurs after spinal cord injury (SCI). How this loss affects arousal, orgasm, and fertility depends on your level of injury and whether your injury is complete or incomplete.
A pressure sore is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. They are the most common and sometimes life-threating medical complication of spinal cord injury. This consumer education sheet comes from the Model Systems Knowledge Translation Center and is part of a six-part series on skin care which can be explored on the right side of this page. Topics include Causes and Risks, Prevention, and Building Skin Tolerance.
This consumer education sheet provides a general overview of social security disability benefits, the eligibility requirements, application process, Medicare benefit availability, appeal process, and reasons why benefits could be terminated.
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 Injuries Australia is an international resource that promotes independence, and continues today with a proud history of providing consumer based support and rehabilitation services to people with physical disabilities. They aim to create a society without barriers for people with spinal cord injuries. SCI resources include information on Access and Public Toilets, Clothing and Fashion, Employment and Education, Equipment, Technology, and Wheelchairs, Financial and Legal matters, Health and SCI facts, Housing and Home Modification, and Transport and Travel.
This section of WebMD provides an overview of several types of research on spinal cord injuries. Some of them may be at the point where people with SCI’s are using them on a trial basis. Others might still be in the animal-study stage. They all have the potential to lead to a return of some feeling and movement in paralyzed areas.
People with an “incomplete” SCI have more potential to regain walking than those with a “complete” SCI, but people with both types of SCI may have gait training included in their therapy plans if deemed appropriate by their treatment team. Each individual makes progress in therapy at his/her own pace. Some people may learn to walk well in a few months; others may take years to be able to walk just for exercise. Still others may never undergo gait training.
The Boston Medical Center created The Spinal Cord Injury Guide to give the Spinal Cord Injury community a place to go to get trusted, peer-reviewed information, and to rate the best. The Spinal Cord Injury Guide brings together websites on Spinal Cord Injury chosen by people with spinal cord injuries for people with spinal cord injuries.
The University of Alabama at Birmingham Spinal Cord Injury Model System maintains an extensive information network of spinal cord specific resources. The fact sheets offer quick references to basic spinal cord injury health information. Daily Living topics provide consumer education on Adjustment, Assistive Technology, Caregiving, Family & Relationships, Health Management, Home Modification, Leisure, Mobility, Nutrition, Sexuality, School, and Work. Additional Rehab Tip Sheets provide information on common activities, such as wheelchair positioning, assisted pressure relief, lift transfers, assisted transfers and bed positioning. SCI Health Education Videos are also available for a variety of secondary conditions.
The Spinal Cord Injury Nurse Advice Line is a phone service provided by the outpatient clinic at Craig Hospital, a Model Systems Hospital for people with spinal cord injury. This service provides a dedicated nurse to answer non-emergent calls Monday-Friday between the hours of 9 a.m. – 4 p.m. Nurses at Craig Hospital have the experience to help identify potential complications before they become serious health issues. Two common health concerns are neurogenic bowel or bladder problems and skin issues, both of which can cause major health problems for people living with Spinal Cord Injury if not caught early. In addition to answering health-related questions, callers can obtain educational resources unique for healthy living with this injury.
If you have questions regarding the three following areas, call 800-247-0257 or 303-789-8508 Monday-Friday from 9am to 4pm (MST).
1. A non-emergency medical question arises that does not warrant a trip to the doctor’s office, yet needs answered.
2. Experiencing changes in care and wondering whether it is “normal?”
3. A new caregiver arrives and needs education materials to help in the transition.
Calling itself a “knowledge base,” the Spinal Cord Injury Zone provides news and information on Spinal Cord Injury-related issues. Here you’ll find facts and answers to common questions about Spinal Cord Injury, medical issues and daily life. The videos offered are good educational and inspirational tools. The mission of The Spinal Cord Injury Zone is to archive important Spinal Cord Injury News and Spinal Cord Injury Information for education and awareness.
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.
Published by the National Institute of Neurological Disorders and Stroke, this online pamphlet provides an overview of spinal cord injury describing how the spinal cord works, what happens when it is injured, how injuries are diagnosed and classified and how rehabilitation helps with recovery.
“Spinal Cord Injury: The First 90 Days,” by Sam Maddox, is a guide to acute SCI. It details the first hours, days and weeks after traumatic injury; it defines the injury and outlines basic medical care now and in the future. In easy-to-understand language, the book offers detail on the complex medical and psychological issues that define SCI. It is available three editions: Southern California, Rocky Mountain Region and Arizona.
The ability to control urine release may be limited because of injury. Surgery can sometimes be used to help manage these problems if nonsurgical bladder management approaches do not work. To learn about the problems caused by your injury and the strategies used to help you manage bladder problems follow this link or read Bladder Management Options Following Spinal Cord Injury.
Available in English and Spanish, this factsheet offers general information about surgical and reconstructive treatment of pressure injuries. During surgery, the wound is cleaned (debrided) to remove any dead or infected tissue, which sometimes includes removing some bone. This process creates a larger wound, but the remaining tissue is healthy and more likely to heal. Stage 3 and 4 pressure injuries are wounds that most often need surgical and reconstructive treatment to promote healing.
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.
Understanding Spinal Cord Injury is a video resource developed by the Shepherd Center, a Spinal Cord Injury Model Systems Rehabilitation Hospital. The videos cover important topics on recovery using simple language and feature people living with spinal cord injury, as well as medical experts and advocates.
Each year, United Spinal helps thousands of individuals living with spinal cord injuries or disorders overcome the daily challenges of living with a disability. With over 60 local chapters and support groups nationwide, United Spinal Association connects people with SCI/D to their peers and fosters an expansive grassroots network that enriches lives. Free webinars are provided on a regular basis to help individuals and their families stay informed and connected to helpful resource information. The resource library offers useful links to services, articles and studies. Click on Chapters at the top toolbar to locate your state association.
This factsheet outlines the causes of urinary tract infections (UTI) and why they are so common in people with spinal cord injuries. Learn about the signs and symptoms of a UTI, as well treatment options and prevention.
The Rehabilitation Institute of Chicago, describes the “Spinal Cord Injury Model System” and explains why it is important to you. A brief outline of criteria to become a model system in spinal cord injury as designated by the National Institute on Disability and Rehabilitation Research (NIDRR) is also provided.
This consumer education article details the requirements for how much you can work and still maintain SSDI (Social Security Disability Income) benefits. The article also provides additional consumer education sheets on working and eligibility for Social Security Disability.