Posture, Movement & Exercise
As SMA causes muscles to get weaker, it affects posture and movement. How much weaker and what effect this has day-to-day is very individual and no two people are the same. The support and services people want and get can also vary greatly. Maybe you’ve experienced increasing muscle weakness since you were an infant. You possibly had quite a bit of physio and occupational therapy (OT) support in the past that’s tapered off and you may be wondering what the latest thinking is and whether you’re now getting all the support and advice you should be.
Or you could be someone whose muscle weakness started to impact on your life later in your teenage years. Perhaps you’ve just got on with it and haven’t had any particular guidance about your posture, movement and exercise. Maybe you haven’t seen a physio or OT for a long time but are now finding your mobility a bit more challenging day-to-day and are wondering if exercise or anything else could help.
Or perhaps you’re someone whose SMA has been diagnosed in your adult years and whose muscle weakness is only now beginning to show. You may have had some advice and guidance, but you’re wondering if there’s anything you’re missing out on.
You're just as likely be someone in-between.
Page last updated: July 2019
The International Standards of Care for SMA (Soc)
The key thing in terms of what’s recommended for your posture, movement and exercise is not what your clinical classification was when you were diagnosed (such as SMA Type 1, 2, 3 or 4), but which physical milestones are relevant for you now. 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 they’re used in the SoC, which is the reference point for all medical professionals.
Chapter 3 Physiotherapy and Rehabilitation of A Guide to the 2017 International Standards of Care for SMA (SoC):
www.smauk.org.uk/international-standards-of-care-for-sma will tell you what they recommend about posture, movement and exercise for people with 5qSMA (Types 1, 2, 3 or 4) and what care and management you can expect. If you have questions about this, a physio or OT is best placed to advise you.
Accessing Physio & OT Support
If your care is overseen by a specialist centre, ask your neuromuscular consultant, or whoever you have contact with in the team, to refer you to the team’s physio or OT.
If your care isn’t currently overseen by a specialist centre or you haven’t got a physio or OT to advise you, you'll need to ask your GP to refer you. If you need help to find your nearest specialist centre, please contact Support Services at SMA UK.
There are two neuromuscular centres in the UK. Both are charities and both offer physiotherapy, complementary therapies, support and advice to adults who have a neuromuscular condition. The services are free to the user but you will need to be referred by your GP or consultant. More information is available directly from the centres:
- The Neuromuscular Centre Winsford
Phone: 01606 860 911
The Neuromuscular Centre, Woodford Lane West, Winsford, Cheshire, CW7 4EH
The centre covers mainly the North of England and North Wales
- Muscular Dystrophy Support Centre
Phone: 02476 100 770
Hereward College, Bramston Crescent, Coventry, West Midlands, CV4 9SW.
The centre covers the Midlands region.
Further Information & Resources
As well as checking the SoC, you may find the suggestions in our information sheet helpful: Looking after yourself if you’re an adult who has had a recent diagnosis of SMA: www.smauk.org.uk/recent-diagnosis-adult-onset-sma
You may be interested to read our Clinical Care Correspondent’s November 2020 review of the research into the role of exercise in SMA: www.smauk.org.uk/exercise-spinal-muscular-atrophy
Muscular Dystrophy UK have published an update of their document - Exercise advice for adults with muscle-wasting conditions. The advice, which was originally produced in 2014, has been updated by some of the UK’s expert neuromuscular physiotherapists working with adults, and provides people with information about the importance of exercise, and how it can be safely carried out.
In March 2019, Cochrane Neuromuscular Disease Group published a review of the evidence (up-to-date May 2018 on Exercise for SMA Type 3: www.cochrane.org/CD012120/NEUROMUSC_physical-exercise-training-people-spinal-muscular-atrophy-type-3)