Understanding Spinal Cord Injury….. A Lived Experience story!
In writing this blog I’m reminded (but I won’t dwell) of our own family’s journey with SCI and how traumatic, frightening and isolating the experience was.
Our family’s life changed in an instant when my husband sustained a cervical spinal cord injury in the surf at the Gold Coast on a sunny Easter Sunday in 2023 - he was instantly paralysed from the neck down. It was a moment so sudden that he would later describe it as “feeling like someone had turned off a light switch”.
Had it not been for the quick response of the life guard on duty that day he would not be here (and I always like to give a shout out to Patrol group 4 - Southport Surf Life Savers).
As the lifeguards attended to my husband I stood frozen in time, torn between comforting my distressed daughter and my husband.
The first words he said to me shortly after he was pulled from the surf was “I’m Sorry”.
We both knew at that moment our lives were forever changed….
A spinal cord injury (SCI) is a life-altering experience, not just for the individual affected, but for their loved ones as well. It’s an event that can shake the foundation of everything you know about your body, your independence, and you and your family’s future. You are immediately thrust into a health care and rehab system where you have little control, limited information and little to no emotional support.
But despite the challenges, recovery, adaptation and hope for the future are possible. As we have discovered there are some amazing people out there doing incredible things - and for them we will be forever thankful.
One of those incredible people was my husband’s Occupational Therapist. She instantly honed in on helping my husband improve his upper limb function - a vital step in reclaiming indepedence. At the same time she was also acutely aware of the impact that Trauma has on the nervous system. She was able to connect him with other practitioners to assist in his recovery. We finally felt like we had someone on our side.
In understanding causes, symptoms, and treatment options for SCI—our OT knew how to approach his recovery with trauma-informed care - sharing many insightful observations with us.
In this blog, I’ll provide an overview of SCI, offer an insight into the trauma-informed approach to treatment, and discuss how occupational therapy plays a pivotal role in helping individuals recover and thrive.
What is a Spinal Cord Injury?
After my husbands SCI he was often told (by well meaning people) “hope you get better soon”. It surprised us that people thought it was an injury that you could just get over! So, if you are new to the world of SCI or just unfamiliar with the symptoms and causes here is a quick explanation of what a spinal cord injury is.
The spinal cord is the body’s vital communication pathway, transmitting messages from the brain to the rest of the body. When an injury occurs, it disrupts this communication, leading to a loss of function and sensation below the injury site. SCI can manifest in various forms, including paralysis, loss of feeling, or dysfunction in critical bodily functions like breathing, digestion, circulation, bladder and bowel function.
The terms "complete" and "incomplete" refer to the level of injury and the degree of loss of function.
1. Complete Spinal Cord Injury:
A complete SCI means that there is no sensation or movement below the level of the injury. The spinal cord is fully damaged at the injury site, causing a total loss of function in the parts of the body controlled by nerves below the injury.
2. Incomplete Spinal Cord Injury:
An incomplete SCI means there is some preserved function (either movement or sensation) below the injury site. The spinal cord is only partially damaged, allowing some nerves to still send signals to the body parts below the injury. This can result in varying degrees of movement, sensation, and function.
For example - my husband is a C4 tetraplegic but has movement below the site of impact making him an Incomplete C4 tetraplegic which means that everything below C4 is impacted to varying degrees.
The impact of SCI is not just physical; it can affect emotional health, mental well-being, and a person’s sense of identity. That's why trauma-informed care is so important in the journey toward recovery.
Causes of Spinal Cord Injuries
Spinal cord injuries can happen for a range of reasons, each injury has its own context and each persons experience is unique - as is the trauma related to the event.
Understanding the cause is an important part of the recovery process. Some of these causes can be:
A motor vehicle accident.
A fall - either from a height or a simple slip on a wet floor.
Sporting injury -rugby and mountain biking are 2 examples.
Violence such a physical assaults.
Diseases like MS, spinal tumours or infections.
Congenital conditions like Osteoporosis.
In my husbands case it was being tumbled by a rogue wave - his head hitting the sand at just the right angle for a devastating impact to his spinal cord at C4.
Recognising the Symptoms of Spinal Cord Injuries
Symptoms can vary widely depending on the location and severity of the injury. These symptoms aren’t just physical but can also affect an individual’s emotional and mental well-being.
Loss of Movement: Paralysis or weakness in the body.
Loss of Sensation: Numbness or a loss of sensation below the injury site.
Breathing Difficulty: In some cases, the ability to breathe without assistance can be compromised.
Pain and Sensory Changes: Many people experience constant nerve pain, tingling, or a feeling of “pins and needles”.
Bowel or Bladder Issues: SCI may interfere with the body’s ability to control bladder and bowel functions.
Sexual Health: SCI can affect sexual function, which may have significant emotional and relational impacts.
The Trauma-Informed Approach to Spinal Cord Injury Treatment
When it comes to spinal cord injury treatment, trauma-informed care is essential. Understanding that individuals recovering from SCI are not just “patients” but resilient people going through an incredibly tough experience.
A person with an SCI can feel quite vulnerable both in the health care system and out in the public. It’s important to create an environment where the person feels supported, heard and respected. In doing do we create an environment where healing on more than one level is possible. This can be done by”
Creating a Safe Environment - ensuring that emotional and psychological needs are addressed with sensitivity and care.
Fostering Empowerment: not about simply “doing” things for people but empowering them to regain as much independence as possible.
Recognising and Addressing the Impact of Trauma: A spinal cord injury often comes with intense feelings of loss, immense grief and fear for the future.
How Occupational Therapy Supports SCI Recovery
Occupational therapy is a critical part of SCI rehabilitation. It focuses on helping individuals regain independence in daily activities and adapt to life with their injury. An occupational therapist will provide support, guidance, and strategies for navigating the complexities of recovery while also liaising with other health professionals to work collaboratively for the best possible outcomes for the patient.
Some key areas where occupational therapy plays a vital role include:
Physical Therapy: Upper limb therapy to manage hypertonicity, improve strength, and address reduced sensation.
Rebuilding Confidence in Daily Tasks: Occupational therapists teach adaptive techniques to help individuals with basic tasks like dressing, eating, or grooming, which can feel overwhelming after an SCI.
Assistive Devices: Occupational therapists assess and recommend mobility aids, including wheelchairs, braces, and other devices, helping individuals achieve better independence and mobility.
Emotional and Psychological Support: SCI recovery often involves a journey of emotional adjustment. Occupational therapists offer a supportive environment.
Home Modifications: Occupational therapists assess a person’s living environment and suggest modifications—such as ramps, grab bars, and wider doorways—to ensure the home is safe and accessible.
Getting back behind the wheel: An Occupational Therapist can conduct a driving assessment designed to ensure safe and independent driving and advise on the need for vehicle modifications.
Accessing Crucial NDIS supports: An Occupational Therapist can assist in accessing the National Disability Insurance Scheme. An OT will assess how the individual’s condition impacts their ability to perform daily tasks such as self-care, mobility, home management, work activities, and community participation. This assessment is a key part of the NDIS application, as it helps determine eligibility and the level of funding needed. You can read more about how to access NDIS support here
Hope for the future
While spinal cord injuries are a devastating, life changing experience, it’s important to remember that recovery and adaptation are possible. The road to recovery can feel daunting, lonely and overwhelming but it's important to remember that hope is always a part of the journey. Advances in medical research and therapies are creating new possibilities every day. With the right support, including physical and emotional care, many individuals with SCI are leading fulfilling lives, finding new strengths, and discovering adaptive ways to engage with the world. The future may look different, but it can still be bright.
Enjoying adaptive activities with the team at Sargood on Collaroy
Naomi Mawson and Mark Ferguson
