Whether you are completely independent after your SCI or you will be directing others to assist with your care, the importance of being able to self-manage is fundamental to your overall health and well-being. It requires that you take ownership of your health and learning, and involves: gaining knowledge about your spinal cord injury, learning skills to manage your new body, and gaining the confidence to make decisions and to take action to live well after SCI. This is a gradual process that will begin when you are an inpatient and will continue when you return to the community.
WHAT DO I NEED TO KNOW?
1. Knowledge gained through:
- Participating in therapy
- Attending client education sessions at GF Strong
- Asking team members and peers lots of questions
- Accessing reliable information (see resource section at the end)
2. Skills gained through:
- Attending therapies
- Practicing skills on the unit or at home
- Practicing skills in the community
3. Confidence gained through:
WHAT CAN I DO
1. Understand your injury
In order to be able to self-manage you need to have a good understanding of your spinal cord injury. You need to know your level of injury, how complete it is, and how it affects different body systems. For example, do you have a flaccid or spastic bowel and bladder? Are you prone to autonomic dysreflexia? The various chapters of this manual will help to explain the various effects after a spinal cord injury. Accessing other reliable information and resources will also be helpful and some key links are provided at the end of this chapter under Resources.
Receiving therapy (both inpatient & outpatient) and connecting with peers will also be an important part of learning about how your body has changed after spinal cord injury.
Additionally, you will need to have a thorough understanding of your various self-care routines. For example, knowing what you need to do in order to properly manage your bladder, bowel and skin. The ability to self-monitor, which is to observe & track various aspects of these areas (eg. amount of urine output or if your urine is cloudy/smelly) will assist with problem solving in order to stay healthy.
2. Learn how to problem solve
Throughout this resource we have included a section on how to problem solve various areas of managing a spinal cord injury. The basic approach is as follows:
When you are having a problem and you are not sure what to do, try this problem-solving approach:
Step 1: Identify the problem
Step 2: Gather information. Try to get a better understanding of what may be causing the problem and different ways to possibly solve it. This can involve consulting with health-care providers, speaking with peers or accessing reliable resources.
Step 3: List possible solutions: based on the information you find, make a list of things you might try.
Step 4: Try one option & evaluate the results. It is important to make only one change at a time so you can tell whether it works or not. Keep track of what you do and what the results are. If you solve the problem, that’s great! If not, you may want to go back to Step 3 and choose another. Problem-solving can involve lots of trial and error.
Step 5: Know when to ask for help. Don’t try to take everything on by yourself. You can ask your health care team for information and help with your problem-solving as your needs change over time. SCI-BC is also a great resource.
3. Learn how to work with your health care team in PARTnership
It is also helpful to be prepared for visits with various health providers, especially when you are back living in the community. This acronym can be useful in helping you to be organized for your appointments:
PART stands for prepare, ask, repeat and take action:
Prepare: first, prepare for appointments by keeping track of problems and issues you want to discuss. You may want to make a list and give the list to the health care provider at the beginning of the appointment.
Keep a record of what is happening: when, for how long, and what makes it better or worse. There are various apps that can assist with tracking symptoms.
Especially after discharge from rehab you should know what medications you are on and why, and make sure your health-care provider has an up-to-date list of your medications
Ask: during your appointment make sure you ask any questions you have about what your health care provider is telling you. If what they say is not clear, let them know.
Repeat: you will also find it helpful to repeat back the information you receive to make sure there are no misunderstandings. This is especially important with information that you need to act on.
Take Action: follow any guidance or suggestions you receive, and take note of any problems so you can tell your health care provider about them at the next appointment
WHO CAN HELP ME?
Learning how to self-manage after a spinal cord injury may seem overwhelming at first. With time, practice, patience and support you will gain the skills required to take action and to make decisions that will lead to increased health and life satisfaction. Working with various team members will help you to gain the knowledge, skills and confidence required to lead a self-managed lifestyle. Connecting with peers and hearing about their journey to self-management will also give you some ideas about how to manage. Taking a self-management course can also be extremely helpful in gaining additional understanding and suggestions.
Being able to effectively self-manage will help you to prevent complications and additional hospitalizations, manage pain and other challenges, as well as increasing your sense of control over your life. It involves taking ownership of and responsibility for managing your spinal cord injury and is essential in assisting you to live well after SCI.
- Spinal Cord Essentials – Excellent resource on a variety of SCI related topics
- SCIRE Community – Excellent research on a variety of SCI related topics based on research evidence, aimed at laypeople.
- Health Storylines – an app for people with SCI to assist with tracking and monitoring of health and complications.
- SCI Emotional Wellbeing Toolkit – An informational resource on dealing with emotions and mood after an SCI, aimed at clinicians.
- SPINALpedia Database – A resource library for people living with an SCI
- Health Maintenance Toolkit – a guide for troubleshooting SCI-related health issues
This website contains general information about medical conditions and treatments. All information, content, and material of this website is for informational purposes only and are not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. (c) 2018 Spinal Cord Injury BC