Everyone wants to know if there is a “cure” for spinal cord injury (SCI). There continues to be significant progress made toward this goal, but, despite any claim that there is a cure, there is currently no cure or proven way to completely reverse paralysis caused by SCI.
There is almost always hope for at least some improvement after SCI. Here are three areas for potential improvement after SCI.
- The severity of your injury may improve. At the time of your injury, your injury is graded as either complete or incomplete. One example of improvement is that you may be first classified as AID C and improve to AIS D.
- The level of your injury may improve. At the time of your injury, you are diagnosed with a neurological level of injury. One example of improvement is that you may be first classified with a C4level of injury and improve to a C5 level.
- Your functional abilities may improve. These are the activities you are capable of doing with the movement that you have. This also includes what you can do with the help of home modifications, medical equipment, adaptive devices, assistive devices, and assistive technologies. One example of improvement is that you may not first have the strength or movement needed to push a wheelchair but gain the needed strength and movement over time.
There is no guarantee and no way to know how much, or if any, improvements you will have. You have to wait to see what happens in the months after your injury. However, here are a few basic rules of thumb on improvement.
- Many people with complete injuries regain 1 to 2 levels of injury. The improved muscle movement can result in improved functional abilities.
- People with incomplete injuries are more likely than people with complete injuries to regain muscle movement.
- Your chances for regaining muscle movement are better as long as you are seeing gains in muscle movement or feeling.
- Your chances for regaining control of muscle movement get lower the longer you go without seeing any gains in muscle movement or feeling.
The way your brain and body work together changes after SCI. You may lose your ability to control muscle movement and your ability to “feel” things. Your brain may no longer be able to guide your ability to control your bowel, bladder, and other body functions. Simply put, you probably cannot do some daily living activities in the same way as you did before your injury.
Rehabilitation (rehab) is a medical specialty that helps you find different ways to do the daily living activities. Rehab offers skilled professionals who work as a team to help you achieve the best possible health, functional abilities, and quality of life after SCI.
Key Members of Your Rehab Team
- Physiatrists (pronounced fiz-EYE-ah-trists) are rehab doctors who lead your treatment team and manage your medical care. Physiatrists (pronounced fiz-EYE-ah-trists) are rehab doctors who lead your treatment team and manage your medical care.
- Psychologists develop and apply treatment strategies in counseling to help you through your adjustment to life after injury.
- Nurses usually carry out the care plan set by your healthcare team, and they often provide the essential education you need on how to manage issues like bowel and bladder care. They also help reinforce what you learn in therapy.
- Physical therapists use a wide variety of techniques to help you regain the strength and stamina to maximize your physical abilities.
- Occupational therapists use a wide variety of techniques to help you increase and maintain your independence in carrying out your daily living activities.
- Recreational therapists use activity-based approaches to improve or maintain physical, cognitive, social, emotional and spiritual functioning to ease the return to everyday life.
- Speech-language pathologists (speech therapists) treat the problems related to communication and swallowing.
- Social workers link you and your family to information and resources that help ease your transition from in-patient rehabilitation to home and community living.
You will work with your rehab team to set personal goals. These goals will be based on a realistic expectation of what you should be able to do with the muscle movement you have after injury. These goals can change if you regain additional movement over time.
To reach your goals, you have to work as hard as you can to get stronger and learn the skills you need to manage daily activities and be as independent as possible. Some common goals include using a wheelchair, transferring to and from a wheelchair, driving a car, bathing, eating, and dressing.
Also, learn as much as you can about how to take care of yourself. Learn how to manage your daily concerns, such as bladder and bowel. Learn how to best prevent health problems like pressure injuries, urinary tract infections, and pneumonia. Learn what you should do if you develop pain, autonomic dysreflexia, depression, or other medical problems
- Learning how to take care of yourself also includes learning to direct others to assist with care when needed.
People who have been injured and gone through rehab understand what you and your family are experiencing. They have been where you are now, and they can offer some valuable suggestions to help guide you during rehab. They offer the following advice.
- Trust your rehab team. Think of rehab team as a source of knowledge in your care and put trust in their advice. They can be key partners who work with you to help you set and reach your goals. They can also advise you on how to best avoid many of the common setbacks people experience during rehab. One example is that your rehab team will advise you on how often to do a weight shift (also known as pressure relief). This is important because most pressure injuries can be prevented but can severely limit your ability to participate in rehab and other activities if you get one.
- Remember that who you are does not change after injury. You have the love and support of your family, friends, and others in your community. They can be a valuable support network in helping you reach your goals.
- Approach rehab with a balanced mindset. Everyone hopes they will regain all of their lost movement and feeling. However, the reality is that people are more likely to regain some, but not all, movement and feeling. This makes it very important that you participate in rehab to learn the skills necessary to have the healthiest and happiest life after SCI. Attending education classes will help you learn about SCI and how to take care of yourself. If you do regain everything, you have lost nothing in the process of learning those skills. If you do not regain everything, you will have the valuable knowledge and skills you need for everyday living.
- Be patient. SCI is a life-changing event. It takes time to rebuild your life after injury, and your body will need time to heal from the trauma of your injury. You will need time to regain the strength and stamina to reach your goals. However, you can do it in time.
- You will have bad days. It is only natural to feel sad, angry, or afraid at times. There may be times when it is hard to imagine how you can ever be happy after injury. However, most people do find happiness over time as they begin to realize they can live an active, healthy life.
- Take advantage of peer support. Your rehab team can likely arrange for you to talk with others who have SCI. They have been where you are and learned how to manage day-to-day activities. They can be a valuable source of information. There are also some online support networks. Here are a couple of recommended sites that have a focus in peer support.
- www.spinalcord.org provides information and resources to meet the needs of people with SCI and their families and friends.
- www.facingdisability.com is designed to provide Internet-based information and support for people with SCI and their families. The website has more than 1,000 videos of family members answering real-life questions about how they cope with SCI.
- Ask questions. You will probably have many questions. If you have questions, ask your rehab team. Most questions can be answered, but there may be some questions that cannot be answered. When it comes to regaining movement after injury, for example, sometimes it just takes time to see what happens.
The chart on the following pages outlines the minimum goals that are reasonable for someone with a complete injury at the given levels of injury. This means the goals are expected if there is little to no muscle movement below that level. You may set additional goals if you have muscle movement below that level or you can do more with new and advancing adaptive and assistive technologies.
- You will work with your rehab team to set your own personal functional goals and find ways to reach your goals.
- New and advancing adaptive and assistive technologies continue to greatly enhance functional abilities, especially for those with more limited muscle movement. It can be in your best interest to stay informed on new and advancing adaptive and assistive technologies to continue to enhance your functional abilities.
Reading the Functional Goals Chart
- Find your level of injury in the “Level of Injury” column.
- The “Expected Muscle Control” column shows the minimum muscle movement you are expected to have at that level of injury. This is if you have little to no muscle movement below that level.
- The “Functional Goals” column outlines which activities are expected to be done with that level of injury and little to no movement below that level. You may be able to set additional goals if you gain better muscle control or can do more with new and advancing adaptive and assistive technologies.
- The “What is Needed” column offers suggestions for medical equipment, adaptive devices, assistive devices, and assistive technologies that might be helpful in achieving those goals.
- Search the internet to find any items listed in the chart.
- Some suggestions include items that may not be covered by insurance and must be paid using out-of-pocket expenses.
“Understanding Spinal Cord Injury: Part 2—Recovery and Rehabilitation” was developed by Phil Klebine, MA; Olivia Smitherman, MOTR/L.; Laney Gernenz, PT; and Jill Baldessari, OTR/L, ATP in collaboration with the Model Systems Knowledge Translation Center.
Parts of this document were adapted from materials developed by the UAB SCI Model System, Northwest Regional SCI System, Southeastern Regional Spinal Cord Injury Care System, Rocky Mountain Regional Spinal Injury System, and Paralyzed Veterans of America Consortium for Spinal Cord Medicine.
“Understanding Spinal Cord Injury: Part 2—Recovery and Rehabilitation” was reviewed and updated by Phil Klebine, MA; Olivia Smitherman, MOTR/L.; Laney Gernenz, PT; and Jill Baldessari, OTR/L, ATP in collaboration with the Model Systems Knowledge Translation Center.
The content in this factsheet is based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the Spinal Cord Injury Model Systems (SCIMS), funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
This information is not meant to replace the advice of a medical professional. You should consult your health care provider regarding specific medical concerns or treatment. This publication was produced by the SCI Model Systems in collaboration with the University of Washington Model Systems Knowledge Translation Center with funding from the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education, grant no. H133A060070. It was updated under the American Institutes for Research Model Systems Knowledge Translation Center, with funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0082). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this factsheet do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the federal government.
Copyright © 2020
Model Systems Knowledge Translation Center (MSKTC). May be reproduced and distributed freely with appropriate attribution. Prior permission must be obtained for inclusion in fee-based materials.
More in the Understanding Spinal Cord Injury Part 1: The Body Before and After Spinal Cord Injury factsheet.