Posture, Movement & Exercise
Because SMA causes your muscles to get weaker, it affects your posture (the way you hold your body) and movement. How much weaker - and what effect this has day to day is very individual - no two people are the same.
Maybe you’ve had a lot of difficulties with your posture and movement since you were very young. You may have equipment that helps you lie down comfortably or, if you can, sit or stand in the best position you can manage. You may be used to seeing a physio or occupational therapist (OT) who’s given you lots of advice about exercises (and you may not be that keen on some of them!).
Or, maybe you’re someone who can walk, but you’re having some difficulties getting upstairs and you’re finding you’re sometimes a bit wobbly when you first stand up. You could just as likely be someone in between.
Standards of Care - Non-Sitters, Sitters, & Walkers
The International Standards of Care for SMA (SoC) have been written by expert clinicians with input from people affected by SMA. They set out the minimum standards of care that anyone with SMA should expect, wherever they live. They’re used by your medical team whenever they’re discussing and deciding with you and your parents what’s the best care and management for you. They’ll be thinking not only about your ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also about which physical milestones you’ve reached.
For simplicity, these milestones are sometimes used to group people with SMA as:
- non-sitters - those who are unable to sit
- sitters - those who are able to sit but not walk
- walkers - those who are able to walk
They’re not the most user-friendly terms, but advice and care may vary depending on which one applies to you.
If you want to take a look, you can read the Guide to the International Standards of Care, here: www.smauk.org.uk/international-standards-of-care-for-sma
This section you’re reading now talks about what’s covered in Chapter 3, Physiotherapy and Rehabilitation, but maybe makes it a bit more readable.
Martyn Sibley who has SMA chats to Lindsey Pallant (Clinical Specialist Physiotherapist at Leeds General Infirmary) and Felicity Vann (Senior Specialist Paediatric Physiotherapist at Evelina London Children's Hospital) about Posture, Movement and Exercise. Scroll down further and open up the other tabs for more information as well.
Recorded: September 2020
Page last reviewed: August 2021
Next review due: August 2022