Physiotherapy
Regular movement is important to keep you or your child mobile, healthy and well. Through their knowledge of the structure of the human body and its movement, physiotherapists can help children and young people with SMA maximize their physical abilities.
(Throughout this page, when we refer to 'child' or 'children', we are referring to children and young people with SMA.)
Frequently Asked Questions
A physio is an allied health professional who can assess how a young person’s body is growing, moving, and functioning. They:
Measure muscles in the arms and legs to check for tightness and may assess muscle strength, posture and functional abilities such as rolling and crawling in infants and sitting, standing and walking in older children.
May provide a home exercise program for individuals to do themselves or with their parent/caregiver, and/or a plan to balance activities and fatigue throughout the day.
May provide guidance for managing respiratory (breathing and coughing) problems at home.
May work in the specialist hospital neuromuscular clinic or be a community physio close to your home. Most children have check-ups with the hospital physio and do regular exercise/therapy sessions with their community physio.
You and your child will work closely with a physio to help maximize their motor skills during growth and development and protect their muscles and joints from tightness, with the goal of getting the most out of their body and its abilities.
A regular physio assessment helps to monitor your child’s physical function (what they can do) and allow your physio to manage any changes or challenges you are noticing, for example tightness in muscles or joints.
The physio works closely with the rest of your health team to achieve the best possible health-outcomes for your child with SMA.
Your physio can update your child’s home exercise program and work with their community therapy team to ensure that all available supports are in place to enable your child’s confident participation in all aspects of life, such as childcare/kinder/school, family, community and social experiences.
Typically, you and your child will see a physio soon after diagnosis.
The nature of the advice, assessment and management you and your child receive will align with the medical treatment they are currently receiving, target the concerns and goals you and your child bring to the session and be informed by your child’s individual assessment on the day.
A physio appointment usually involves:
A conversation to catch up on how things are going. The physio will want to get an idea of how your child is coping with day to day life, the supports they currently have, how they are going with their home exercise program, discuss their gross motor skills and developmental milestones, and whether they are experiencing difficulties, for example falls or fatigue.
Measurement of your child’s arm and leg movements on the therapy bed, using a goniometer.
Observation of your child completing different physical activities. The activities are observed in the same way each clinic visit, so that the physio can understand any changes or challenges your child is having with their movement.
A plan and home exercise program will be provided based on the assessment. If you are comfortable, the physio will communicate this to your community physio/therapy team so they can support you in any plan provided.
For resources to help your child prepare for their physio appointment see the extra resources for parents and children tab below.
- Wear or bring with you comfortable, stretchy clothing such as a tracksuit/shorts, t-shirt and runners
- Splints or braces if you have them, including AFOs, in-shoe orthotics and trunk/spinal supports
- Contact details for your community therapist(s)
- Questions or concerns you may have about your child’s physical function, movement or gross motor skill development
- Support for your child to feel comfortable during the hospital visit: such as entertainment (eg. toys, books or iPad) for distraction or sensory tools for calming if required, a drink of water and snack
The physio is measuring to check for joint or muscle tightness that may affect your child’s movement.
Weakness and the movement difficulties associated with SMA can cause muscles and joints to become tight. When this happens, your child’s body cannot move as easily. Tightness can limit your child’s ability to function for example knee and ankle tightness can make standing and walking difficult, hand and wrist tightness can make hand function difficult. It’s important that we check for muscle and joint tightness so we can add stretching exercises to your child’s home exercise program. The prescription of splints such as ankle foot orthoses (AFOs) or knee splints or undertaking serial casting are other ways your physio might suggest to maintain your child’s muscle length and support their joints.
Your child will lie on the clinic bed. When they are relaxed the physio moves the body part (such as knee or ankle joint) and measures how far it can comfortably go. The physio will use a goniometer to measure the joint angle – it looks like a ruler.
If it is needed, your physio will refer to an Orthotist or Orthopaedic Specialist for advice on managing the joint and muscle tightness.
The assessment of activities called motor function assessments and have been designed for children with SMA.
Motor function assessments allow the physio to see what physical things your child can do and where they may be finding movement more difficult. This helps the physio to understand how their body and daily life is being affected by their condition and what impact treatments are having.
This information can be used to:
Monitor for change in their abilities since their last physio appointment
Provide you and your child with accurate advice
Build a plan with you and your child to manage the effect of SMA on their physical function.
It can be useful to talk with and prepare your child before attending their appointment, so they know what to expect.
There are a range of resources available depending on your child’s age, level of understanding and communication. If you are concerned or need more information before your appointment, contact your therapy team.
For resources to help your child prepare for their clinic visit to the physio see the extra resources for parents and children tab below.
Yes, you can and we strongly encourage you to engage with a local physio who can work with you and your child in your home, at their childcare/kinder/school and in community settings, for example a local gym for a young person.
If your child is of school age, they may also be eligible for Department of Education funding to provide support for children with disabilities to access the school curriculum. Access and eligibility to this funding may vary throughout Australian states and territories. Ask your therapy team for more information and guidance.
If you are on the National Disability Insurance Scheme (NDIS) you can apply for funding support to access regular physiotherapy visits in your home and community. Seek guidance from your NDIS Local Area Coordinator (LAC) or support coordinator to find an appropriate therapist in your area.
If you are not interested in joining NDIS or not eligible, please talk to your healthcare team about other funding possibilities.
Ideally, you and your child should find a physio who either has experience working with kids (a paediatric physiotherapist) or treats people with neurological conditions or disabilities.
As SMA is a relatively rare condition, not all physios in the community will have a good understanding of the condition itself. It is important that the physio you find is happy to learn about SMA and work with the neuromuscular team at the hospital to best support your child. Most importantly, you and your child must feel comfortable with whoever you are seeing.
For introductory information about SMA to give to your physio see extra resources for parents and children.
It is useful for your hospital (neuromuscular clinic) and the community physio to stay in contact and share their assessment findings. This helps to ensure you and your child receive consistent information about your child’s function, physiotherapy plan and functional goals.
It also means, that if you or the community physio have any concerns about how your child is going, they can help you alert your hospital neuromuscular team as soon as possible for review.
Please note that you will be asked to provide consent for your community and hospital physios to talk to each other about your child’s current function, physiotherapy program and goals.
It is important that you and your child takes care of their body between clinic visits. This may be by targeting tight muscles with a stretching program or wearing resting splints, performing a functional strengthening program, practicing a new skill or participating in safe activities to maintaining general fitness.
Your clinic physio may suggest a home exercise program based on their assessment that is specific to your child’s needs. If you have a community therapist, they will be able to support and enhance this program.
Make sure you let someone know - either your community or hospital physio. Work closely with your community physio to trouble shoot the problems. Seek support from your hospital (neuromuscular clinic) physio if further help is needed.
Further learning
Outcome Measures and Assessment
When you and your child visit the physio or occupational therapist, your child’s physical functioning will be assessed using motor function assessments. Assessments are carried out regularly if your child is enrolled in a clinical trial and will also be performed at your child’s hospital clinic appointment as part of normal care.
To learn more about these assessments, please click the button below.
SMA and Stretching
Your therapist may have recommended a stretching program because your child has developed or is at risk of developing tightness in their muscles or joints. To learn more about stretching and SMA, please click on the button below.
SMA and Exercise
Your physio or occupational therapist may provide you or your child with an exercise program. This program will be designed taking abilities, goals, interests, and personal circumstances into consideration. To learn more about exercise and how to do it safely, please click on the button below.
Extra resources for parents and children
These are easy-to-read summaries for parents to read with their children. Click the links below to access them.
These are short picture books for parents to read with their children to prepare them for some physio assessments. You can download and print these picture books by clicking on the links below.
These are diary templates that parents can print out for their children to help them keep track of their daily stretches. You can download and print these templates by clicking the links below.
