Rehabilitation at home after a Spinal Cord Injury
About the Spinal Cord
The spinal cord is a thick bundle of nerves and tissues that extends from the base of the brain down the length of your back, it is protected by the bones that make up your spine.
The spinal cord is responsible for communicating two-way messages from your brain to your organs, muscles and skin.
It is estimated that approximately 2,500 people in the UK have a spinal cord injury each year.
About Spinal Cord Injuries
A spinal cord injury can be either traumatic (meaning caused by a trauma such as a road traffic accident) or non-traumatic (caused by an infection of the spine).
When the spinal cord is damaged or injured, some of the messages or impulses may be interrupted which can cause partial or total loss of feeling or movement in parts of your body.
Usually loss of movement and feeling will occur below the level of the injury, for example an injury to the spinal cord at the neck will cause paralysis to a larger part of your body than an injury to the spinal cord in your lower back. Some people may experience tetraplegia (affecting all four limbs) or paraplegia (affecting lower limbs).
When you are diagnosed with a spinal cord injury your injury will be referred to as complete (meaning that there is no motor or sensory control below the level of injury) or incomplete (meaning that there are some motor and sensory changes below the level of injury and there may be greater potential for improvement).
The nature of a spinal cord injury means that as well as the physical impact, there are also emotional and psychological effects on the injured person and their family.
Following a spinal cord injury and a period of assessment or rehabilitation in hospital you will return home and have more questions about recovery and rehabilitation.
Recovery is about more than the improvement of physical capabilities. Resources to improve wellbeing after a life-changing injury are equally valuable as well as support around managing fatigue.
On this page we aim to provide some guidance and materials to support your rehabilitation at home.
Important information
Some of the resources that we point to below may not be appropriate for all patients and should be used with careful consideration. Some of the resources feature third party organisations and are meant for reference purpose only.
Functioning independently at home will inevitably bring up a variety of new challenges. Skills developed through trial and error and advice in specialist rehab can assist with this transition.
Assistive devices
Specialist tools and equipment such as shower chairs, hoists and eating aids can help to make activities safer and improve your independence. These tools are often called assistive devices or assistive technology.
- This video by San Joaquin Valley Rehabilitation Hospital demonstrates using assistive devices including a universal cuff to support eating.
Assistive devices can be both useful for making activities easier and used for rehabilitation. For example you can use a leg lifter to get in and out of bed or you can use it to undertake stretching.
- This video by EquipMeOT shows different ways to use leg lifters
Exercise
Scientific researchers have recently put together guidelines to inform people with a spinal cord injury how much exercise is necessary for important fitness and health benefits. You can read these here.
- This video by the Shepherd Centre demonstrates Home Exercise for Spinal Cord Injury: Lower Extremity Range of Motion using a leg lifter.
Working on sitting balance and bed mobility will vary depending on your level of injury.
Some suggestions for sporting and leisure activities for people in wheelchairs include:
If your spinal cord injury affects your arms it is important to continue working on strength and range of movement after hospital discharge.
If you have ongoing splinting needs you will have been advised which splints to use and for how much time by a clinician.
Cardiff and Vale University Health Board’s Artificial Limb and Appliance Service assesses and provides wheelchairs on a long-term basis.
Charities, including Back Up, teach wheelchair skills courses where you can develop skills applicable to daily life for example one handed pushing.
- Video on one handed pushing by Back Up
It is important for patients to monitor skin on an ongoing basis due to the length of time they spend in a seated position. If you have any skin issues or suspect a pressure area is developing then contact your GP.
If your home is not suiting your needs contact your local social services for a community occupational therapy assessment.
- Click here for contact details in Cardiff Council
- Click here for contact details in Vale of Glamorgan Council
You may benefit from a referral to the Wales Mobility and Driving Assessment Service.
Video by Royal College of Occupational Therapists on a Driving Assessment Case Study: Stephen’s story
If you require additional information regarding work and pensions please contact the Department for Work and Pensions either directly or through a spinal injury charity.
The Down to Earth Project are eager to have ongoing support and contact with spinal injury patients. Patients may want to return and volunteer or work on this project and use their experience to support others through their rehabilitation journey.
There are a number of charities available for people who have had a spinal cord injury.
Back Up Trust
This is a national UK charity providing support for people with a spinal cord injury.
Examples of support Back Up can give are:
- general support through phone lines or a virtual “Back Up Lounge”
- mentoring for individuals and families
- wheelchair skills,
- support via an app and You Tube channel
- advice for work, children and young people
- courses on work advice, city skills, incomplete walkers
- residential trips to explore outdoor activities.
Please see the Back Up Trust website for further information
SIA (Spinal Injuries Association)
This organisation provides support for patients and professionals, advocacy and guidance on a range of issues which might be bewildering. It provides a learning resource with a number of factsheets and training courses. Volunteers and staff are available to speak to those who are newly injured and their families about their spinal cord injury.
Please see the SIA website for further information
Aspire
They provide support and advice primarily around the following topics:
- Housing,
- independent living,
- welfare benefits,
- access to technology,
- supporting your own fundraising with Your Fund.
In Wales there is a very supportive peer independent living adviser based in Cardiff.
Please see the Aspire website for further information
Regain
Regain is a smaller niche charity which supports people who have tetraplegia as a result of a sporting accident through offering grants. It is well worth getting in touch with them if this applies to you. Amongst other things, they run very successful fundraising cycle rides for both tetraplegic cyclists and able bodied riders.
