Living with a spinal cord injury
Understanding your health and wellbeing needs, and the support available to you, will help you to regain control of your life and choices, putting you on the right path to live a fulfilling and meaningful life with your spinal cord injury.
Different needs at different times
At different times in your life, living with a spinal cord injury presents unique health and wellbeing needs, related to your injury. The resources and tools in this Health Maintenance Tool and the SCI Health Toolkit app have been developed specifically to support you to understand, prevent, check and manage these needs, throughout your life.
“You can’t fix a spinal cord injury but managing and preventing complications is possible.”
A young man with a spinal cord injury
The early years
During the first few years, learning how to adapt to life with a spinal cord injury can be challenging, and at times overwhelming. There may be many questions you have about how your life will change and how to manage your health.
In the early years, there will be a period of significant adjustment for you, your family and friends. There is a lot to take in during this time.
Your initial focus will be on learning about how your spinal cord injury affects you and understanding how to live in your new body.
Regaining control over your situation and choices, as well as navigating the health support you can receive, is key to putting you on the right path to achieving a fulfilling life.
When you are ready, the information in this Health Maintenance Tool and the SCI Health Toolkit is available to help you and your support network.
Quick Links
Your Health
Covers essentials for understanding how spinal cord injury affects the way your body works: bladder, bowel, skin, pain, autonomic dysreflexia and mental wellbeing.
Quick Health Check
A tool to help you to identify the problem, check the seriousness of the problem and understand what action to take to manage it.
SCI Health Toolkit app
The SCI Health Toolkit app provides you with a set of easy-to-use tools to help you track, monitor and share your health and care needs which is available on your mobile device at all times.
As confidence builds
As you learn more about your body, you will become more confident in managing your health issues, and know when to engage more with health professionals regarding your needs. Many people living with spinal cord injury become experts in their own health.
Maintaining good health and wellbeing is critical to building a good life for you and those you care about. In each section of Your Health, there is a Prevent Problems section where we provide helpful tips and information on how to self-manage issues early, and when to engage a health professional, to prevent a small health issue from becoming a bigger health problem. The Quick Health Check tool in the top right-hand corner of the site, will also help you to troubleshoot health problems, quickly.
The Mental Wellbeing section provides you with tools and tips on how to navigate the different needs you will experience from when you are first injured to later-on, once you have ‘lived experience with your spinal cord injury’.
“Maintaining good health is the key to living well with spinal cord injury and a good quality of life.”
A young woman with a spinal cord injury
Ageing with your spinal cord injury
Ageing is a process that affects us all and involves changes to our body systems with functional decline, along with shifts in social roles, financial situation and supports.
However, in a person with spinal cord injury, ageing becomes more complicated as the changes that occur as part of the normal ageing process are overlaid on top of the effects of having a spinal cord injury. As a result, you may experience the effects of ageing faster in some body systems and new health problems developing at a younger age.
Due to the spinal cord injury, there is an immediate reduction in functional reserves and capacities of certain body systems. With loss of capacity in some systems, other systems have to compensate, often performing near maximum capacity. In combination, this change may lead to overloading of some body systems and functions with premature (earlier) or accelerated ageing.
What does research tell you?
- Premature ageing is more likely to occur in your muscles, joints, bones, heart and glands.
- There is more limited evidence that urinary (bladder and kidneys), gastro-intestinal (bowel and digestive system), skin and respiratory (lungs) systems may be prematurely ageing.
- People with SCI are more likely than the general population to experience urinary tract infections, kidney and bladder stones, chronic pain, pressure injuries, and bone loss with fractures.
Issues with ageing with SCI
Age-related changes are intensified by the type of bladder problem, how you manage your bladder and length of time after injury. Potential backflow of urine with kidney damage can result from an overactive bladder and poor emptying
Actions to take
- Drink plenty of water to flush through kidneys and bladder.
- Monitor kidneys and bladder function regularly.
- If problems, discuss different options for emptying the bladder with your doctor.
Issues with ageing with SCI
Age-related changes are intensified by the type of bladder problem, how you manage your bladder and length of time after injury. Potential backflow of urine with kidney damage can result from an overactive bladder and poor emptying
Actions to take
- Drink plenty of water to flush through kidneys and bladder.
- Monitor kidneys and bladder function regularly.
- If problems, discuss different options for emptying the bladder with your doctor.
Issues with ageing with SCI
The function of your digestive system naturally declines with age and spinal cord injury makes slowing of the gut worse.
Actions to take
- Maintain a regular bowel routine
- Eat a well-balanced diet (including fibre from grains, fruit and vegetables).
- Drink an adequate amount of fluid (between 2-3 litres per day).
- Avoid long-term use of irritant medications containing Senna.
- Consider other options if bowel care becomes ineffective.
Issues with ageing with SCI
The secretion of hormones is vital for metabolism, growth, sleep and tissue healing and repair. People with a spinal cord injury have lower levels of certain hormones that decrease with age, including growth hormone and testosterone leading to changes in body composition, obesity and metabolic disorders, with impaired glucose tolerance and higher rates of diabetes.
Actions to take
- See your doctor for a regular health check-up, with monitoring of your weight and blood glucose level.
- You may need to be weighed at local hospital.
Issues with ageing with SCI
Heart disease may occur as the metabolism slows down, with weight gain over time (may eventually become obesity), reduced exercise tolerance, changes in lipid profile (increase in “bad” cholesterol or LDL with decrease in “good” cholesterol or HDL), and diabetes.
Actions to take
- See your doctor for a regular health check-up and monitoring of blood pressure, cholesterol and glucose levels.
- Eat a heart healthy diet and seek help from a dietitian to lose weight. Dietary management is an essential component of controlling weight, serum lipids and blood sugar levels.
- Stay as active as possible.
Issues with ageing with SCI
Worsening lung function due to respiratory or abdominal muscle weakness, spinal curvature or spasms with increased risk respiratory tract infections and clots. Risk of obstructive sleep apnoea increases with age, more so in people with tetraplegia.
Actions to take
- Periodically, have your breathing function and lung vital capacity test assessed.
- Perform inspiratory muscle training.
- Stop smoking.
- Have a sleep study test if you develop symptoms of obstructive sleep apnoea, which includes:
- severe snoring
- periods when stop breathing
- waking up gasping for air
- early morning headaches
- excessive daytime fatigue or sleepiness
- reduced concentration or memory disturbance.
Issues with ageing with SCI
People usually live fulfilling and pleasurable lives without experiencing major emotional problems as they age. In fact, most older adults, with and without a spinal injury, are resilient and adjust well to changes in their physical abilities. They also note improved relationships with loved ones, increased appreciation for life, and changes in priorities.
Actions to take
To keep a positive outlook:
- Connect with others.
- Engage in regular physical activity.
- Participate in enjoyable activities.
- Learn something new, and
- Volunteer or seek services and supports provided by community-based organizations, such as independent living centers, ageing and disability resource centres, and faith-based organisations.
Issues with ageing with SCI
Overuse (‘wear and tear’) of muscles, tendons and joints occurs particularly in the upper limbs (shoulders, arms, and hands) due to the demands of everyday living, leading to injuries (e.g., shoulder rotator cuff tears), inflammation (e.g., tendonitis), arthritis and pain. These changes impact on level of functioning and independence in performing daily activities (such as transfers and wheelchair mobility).
Actions to take
- Modify activity and review transfer techniques.
- Perform regular stretching and strengthening exercises to improve/maintain range of movement and muscle balance across joints (e.g., shoulder).
- Maintain a healthy weight.
- Regularly review equipment, such as wheelchair and seating, and consider use of assistive devices (e.g., sliding board, hoist and power-assist) to maintain posture, function and independence.
- Get your bone mineral density tested for osteoporosis every 3-5 years.
Issues with ageing with SCI
People with spinal cord injury are already susceptible to pressure injuries due to altered sensation and mobility. In addition, with progressive tissue thinning due to ageing, becomes even more prone to breakdown and harder to heal once a pressure injury has developed.
Actions to take
- Check skin for pressure injuries
- Perform pressure reliefs
- Avoid injury and leakage from bladder and bowel
- Use moisturisers and drink plenty of liquids
- Routinely examine your equipment for breakdown or wear and tear that may cause extra pressure on skin.
Issues with ageing with SCI
Late onset weakness or sensory loss, increasing muscle weakness, pain or spasticity can occur with ageing due to normal nerve drop out or problems from:
- Over- or misuse of muscles and bones leading to nerve damage.
- Changes within the spinal cord itself (such as a cyst).
Actions to take
- Refer to transfer guidelines to make sure you are using the correct technique, reduce the number of transfers, make home and work modifications to minimise stress on the arms, use sliding boards.
- See your doctor for an assessment of the tone and strength of your muscles, nerve reflexes, and different types of sensation (e.g., light touch, pin prick).
Recommendations for Ageing with SCI (these may vary by age, gender, ethnic background, family history, and other factors)
- Self-skin check
- Stay active
- Eat and drink responsibly
- Women: Breast self-exam
- Men: Testicular self-exam
- Vital signs / measures including pulse, blood pressure (in sitting & supine lying), vital capacity, weight/waist circumference
- Blood tests including full blood count, biochemistry (electrolytes, Liver function, renal function, blood sugar level), HbA1c, Cholesterol, Vitamin D level.
- Women (40 years and older): mammography
- Men (50-69 years): may have digital rectal exam and prostate specific antigen (PSA) test
- Flu vaccination, especially for people with injuries at T8 and higher
- Renal/Bladder ultrasound
- Comprehensive Health Evaluation reviewing all body systems
- Faecal occult blood test (50-74 years)
- 55 years and older: comprehensive eye exam
- Cystoscopy (in those with long-term indwelling urethral or suprapubic catheters > 10 years)
- Women: breast cancer exam by a doctor
- Women: gynaecological exam and Pap smear
- Assess adaptive equipment and posture
- Assess range of motion, contractures, and function
- Bladder and urethra exam; also do this each year for the first 3 years after any major change in urologic management (including Videourodynamics)
- Bone Health – DEXA scan, performed in first year post-injury (baseline reading) then repeat every 3-5 years)
- Motor and sensory testing
- Multidisciplinary clinic review (of function, participation, ADL, community mobility & lifestyle demands, equipment and care assistance requirements)
- Pulmonary (Lung) function test
- Tetanus booster
- Colonoscopy, which allows your doctor to examine your colon, beginning at 50 years of age (unless at high risk)
Recognise and treat adverse health conditions early.
Health issues specific to women
Women with spinal cord injury have specific health needs when it comes to menstruation, pregnancy, contraception, sexual activity and self-image.
It is important for GP’s and healthcare professionals caring for women with spinal cord injury to ensure they are knowledgeable in the unique problems and needs of women, and know how to support them to manage these issues as they arise.
As women age with their injury, there are some common physical changes and issues they will experience including gynaecological, sexual, bowel and bladder related. These issues, if left untreated, can cause people to worry about declining health, social isolation, increasing dependency and financial stress.