One Queenslander's experience of cerebral palsy - with Jamie Booth
Thursday 4 October 2018
Queenslander teenager and aspiring Paralympian Jamie Booth was diagnosed with cerebral palsy (CP) as a baby, but it has not stopped her from following her dreams.
Jamie’s CP mainly affects her daily movement and fine motor skills.
This doesn’t prevent her from pursuing her passions, which include volunteering, travelling and chasing her goal to qualify for the Paralympics in swimming.
Seven thousand Queenslanders, including 1,500 Queensland children and adolescents, are living with CP – it is the most common physical disability in childhood.
World Cerebral Palsy (CP) Day, this Saturday 6 October, is an opportunity to celebrate and express pride in the lives and achievements of people with CP.
Join us as we chat to Jamie about her CP journey.
Jamie Booth doesn’t remember being diagnosed with CP as she was just 18 months old at the time.
Having had CP her entire life, the 17-year-old doesn’t feel any different to anyone else and her friends and peers don’t treat her any differently either.
Jamie has always loved swimming and last year became a member of the Para START swimming team at the University of Queensland (UQ), a research project setting out to investigate the effect that swimming has on the overall wellbeing of people with cerebral palsy who have high support needs.
Jamie began swimming because it helped to relax her muscles and her mind but after some training the coaches at UQ noticed her natural talent and she did a few competitions as a provisional S3 para swimmer.
She made it all the way to the Queensland State Championships in her third ever race and was only three seconds off making it into the National Championships.
Her goal now is to qualify for the Tokyo 2020 Paralympic Games.
“Just because I have CP doesn’t mean I can’t do things everyone else can,” Jamie says.
“Never give up on you dreams no matter what stands in your way.”
What is cerebral palsy?
Cerebral palsy describes a range of disabilities associated with movement and posture.
CP occurs when there is damage to the developing brain in the area that controls movement muscle tone (the motor cortex). In some cases, the motor cortex fails to develop normally in the foetus. The cause remains unknown for many children with CP.
Depending on the damage, it affects people in different ways and to different extents. The most common symptoms are:
- muscle stiffness
- muscle weakness
- uncontrolled body movements
- problems with balance and coordination
- problems with swallow and eating
A day in Jamie’s life
Jamie has two different types of Cerebral Palsy: one called Choreoathetoid cerebral palsy and another called Athetoid.
This affects her daily movement as her legs are often very stiff and hard to move and she has muscle spasms every few minutes varying in size. Jamie also struggles with fine motor skills like writing and requires assistance every day when transferring from one chair to the other.
On a typical morning, it will be Jamie’s mum or carer who helps to her get up and get ready for the day.
Often, Jamie will then take a taxi or bus to school and from there go to swim training or gym.
After she returns come home, one of her carers will help her shower and get changed. Sometimes, she will even find time to help cook dinner or do some laundry before finally relaxing and go to bed.
In addition to the benefits of swimming in managing her CP, Jamie receives massages to treat her stiffness and takes medication prescribed by her Rehabilitation Specialist.
The support of her mum and dad and extended family, her carers, friends and even occasionally strangers, also goes a long way.
What else people should know about cerebral palsy
Diagnosing CP may take time, however with new research it is being diagnosed earlier, especially in infants who might have a higher risk for CP.
Not all signs and symptoms of CP are immediately detectable and may become more obvious as children grow and develop.
Children with CP may be delayed, have unusual or asymmetrical movement or even miss developmental milestones such as eating without difficulty, using both hands, sitting, taking weight through their legs, and talking.
If you think your child is showing some of the symptoms of CP or their development is delayed, see your early childhood nurse, general practitioner or paediatrician.
Early identification allows for early intervention. The damage to the brain in children with CP does not worsen with age, however it is permanent. There is no cure, but a lot can be done and research into new medical and therapeutic interventions is identifying ways to prevent or lessen the severity of CP for some groups.
There is growing evidence of the brain’s plasticity and which specialised interventions - including sports and exercise - may have the most impact to improve function, ability to participate and quality of life for children with CP.
More about managing CP
Queensland has researchers and clinicians who are world leaders in CP.
Specialised health and community services and the roll out of the National Disability Insurance Scheme across Queensland provide access to support and care that will assist families and children to negotiate their journey with CP.
Many interventions are available for CP which can improve the person’s quality of life and these are chosen on a case-by-case basis to suit the needs of the individual.
When it comes to managing the symptoms of CP, children in particular can benefit from the services of a team of health professionals to help with:
- activities of daily living
- speech, seeing and hearing
- eating and drinking
- emotional wellbeing
Physiotherapists and occupational therapists can help with everyday tasks like sitting, walking, dressing, using cutlery and using the toilet. There are also experts who can help with learning, communication and emotional issues that are often experienced by people with CP.
Medicines such as botox or diazepam may be able to help relax stiff or overactive muscles, reducing pain and improving hand function and mobility. There are splints and orthoses (ankle braces) to help with muscle imbalance and supporting joints, and surgery to help overcome other impairments.
Some useful websites to access further information are: