Posture, Movement & Exercise

Childhood onset 5q SMA affects each child differently and it's impact varies greatly. When your child’s medical team is discussing and deciding with you what's the best care and management for your child, they think not only about your child’s ‘clinical classification’ (such as SMA Type 1, 2 or 3) but also what physical milestones your child has reached. For simplicity, these milestones are sometimes used to group children as:

  • non-sitters - those who are unable to sit
  • sitters - those who are able to sit
  • walkers - those who are able to walk 

Impact of SMA on Posture, Movement & Exercise

As SMA causes progressive muscle weakness and loss of movement due to muscle wasting, it's likely to impact in some way on your child’s ability to keep up with everyday activities. These include tasks such as getting up and dressed, using the toilet, holding cutlery and pencils. Physiotherapists describe them as your child’s ‘functional abilities’.

Another common impact of SMA is tightening of joints (contractures) which can lead to pain and difficulty moving. These problems are common early on for children who are ‘non-sitters’ (usually diagnosed with SMA Type 1) and for children who are ‘sitters’, but tend to occur later for children who are ‘walkers’. 

Management and Care

There are different ways of helping to manage these posture and movement challenges. When your physiotherapist is discussing and deciding with you what might work for your child, their reference and yours will be Chapter 3 Physiotherapy and Rehabilitation of the family-friendly Guide to the 2017 International Standards of Care for SMA: 
www.smauk.org.uk/international-standards-of-care-for-sma This is for those with 5qSMA (Types 1, 2, 3 or 4).

Lindsey Pallant (Clinical Specialist Physiotherapist at Leeds General Infirmary) and Felicity Vann (Senior Specialist Paediatric Physiotherapist at Evelina London Children's Hospital) talk to Martyn Sibley about Posture, Movement and Exercise for individuals with SMA and focus on functional abilities, contractures and posture management.

Recorded October 2020

You may also find helpful information in whichever of the following SMA UK ‘Looking after your child...’ guides is the ‘best fit’ for your child (see below).

Page last reviewed / updated: March 2021
Next review due: March 2022