Understanding Spinal Cord Injury: Part 2— The Body Before and After Injury
Written by Phil Klebine, M.A.; Olivia Smitherman, M.O.T.R./L.; and Laney Gernenz, P.T., in collaboration with the MSKTC.
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 proven way to reverse paralysis.
There are three areas for potential improvement after SCI.
- Severity of Injury: At the time of your injury, your injury is graded as either complete or incomplete. Your grade my change. For example, you may be first classified as AIS C and improve to AIS D.
- Levels of injury: At the time of your injury, you are diagnosed with a neurological level of injury. You may regain levels of injury over time. For example, you may be first classified with a C4level of injury and improve to a C5 level. This means you gain control of more muscle movement.
- Functional abilities: These are the activities you are capable of doing as you regain muscle strength and learn to use those muscles after injury. Pushing a wheelchair is one example.
There is almost always hope for at least some improvement after SCI, but there are no guarantees. You have to wait to see what happens in the months after your injury. Here are a few rules of thumb.
- People with a complete injury often regain 1 or 2 levels of injury. This means you often regain control of 1 or 2 levels of muscle movement.
- People with an incomplete injury are more likely than people with a complete injury to regain control of more muscle movement, but there is no way to know how much, if any, will return.
- As long as you are seeing some improvement, like regaining muscle movement, your chances for improvement are better.
- The longer you go without seeing improvement, your chances for improvement are lower.
Your body drastically changes after paralysis. You have medical needs that must be managed. You lose muscle movement and feeling. Plus, you probably have muscle weakness and fatigue after injury in the muscles that you can move. Simply put, you may not be able to do some daily living activities in the same way you did before your injury.
Rehabilitation (rehab) is a medical service that can help you reach your full potential after injury. Every injury is different, so rehab is tailored to each person’s needs. Skilled specialists provide the necessary services to help you make the most of your abilities.
- 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 orders from your doctor, and they often provide the essential education you need on how to manage issues like bowel and bladder management.
- 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.
- Speech-language pathologists (speech therapists) treat any issues that may develop with swallowing or speaking.
- 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 have to put all of your effort into rehab to get the most out of it. You will work with your rehab team to set goals that are a realistic expectation of what you should be able to do with the muscle movement you have after injury. To reach your goals, you have to work as hard as you can with your rehab team to help you get stronger and learn the skills you need to manage daily activities and be independent. Some common goals include using a wheelchair, transferring, 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 ulcers, urinary tract infections, and pneumonia. Learn what you should do if you develop pain, autonomic dysreflexia, depression, or other medical problems.
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. Rehab professionals are very knowledgeable, and it is in your best interest to follow their advice in setting and reaching your goals. They can also advise you on how to best avoid many of the common setbacks people experience during rehab. For example, pressure ulcers can severely limit your ability to participate in rehab, but most pressure ulcers can be prevented if you do your weight shifts (also known as a pressure relief) as directed by your rehab team.
- 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 traumatic event that tears your life apart in an instant, and it takes time to rebuild your life after injury. 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.
There is a chart on the following pages that outlines common functional goals. These goals are daily activities that most people can manage with the control of muscle movement that they have with a complete injury. You may be able to do additional activities if you have an incomplete injury or if you regain control of more muscle movement. You will work with your rehab team to set your goals and find ways you can reach your goals. Below is a step-by-step guide to using the chart.
- Find your level of injury in the Level of Injury column.
- The Physical Abilities column shows what muscle movement is common for anyone with a complete injury at that level.
- The Functional Goals column outlines how people might manage typical daily activities based at that level of injury.
- The Equipment Used column suggests various equipment options that might be useful in accomplishing those functional goals.
“Understanding Spinal Cord Injury: Part 2—Recovery and Rehabilitation” was developed by Phil Klebine, M.A.; Olivia Smitherman, M.O.T.R./L.; and Laney Gernenz, P.T. in collaboration with the Model Systems Knowledge Translation Center.
Portions 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.
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. The contents of this fact sheet were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0012-01-00). The contents of this fact sheet do not necessarily represent the policy of Department of Health and Human Services, and you should not assume endorsement by the Federal Government.
Copyright © 2015
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.