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Teenagers – Posture, Movement & Exercise

Teenagers – Posture, Movement & Exercise

This section talks about what’s covered in the International Standards of Care: Chapter 3, Physiotherapy and Rehabilitation (SoC) which summarises the key recommendations that were made then.

Since publication, new drug treatments have brought rapid change and many unknowns. Clinicians nationally and internationally also constantly review and discuss best care and management practice. This does mean that some recommendations about posture, movement and exercise may now be changing. Though the SoC remain a useful reference point, your care and management of your SMA will be very individualised based on an assessment by your physiotherapist and clinical team and a full discussion with you and your family.

Conversations with Healthcare Professionals – Webinars

In November 2023, Maxwell (a young adult who has SMA Type 2) and Robert Muni Lofra (Consultant Physio) discuss what exercises work for Maxwell. Robert talks about how the way a person’s SMA affects them, the experiences they have had of trying different exercises, and how physically active they are able to be, all need to be taken into account when a physio recommends an exercise plan:

In November 2020, 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). Scroll down further for more information.

When SMA weakens muscles, as well as affecting whether you can do things like sit up or walk, it can make it hard to do other everyday things like getting up and dressed, using the toilet, holding cutlery and a pen or using the mouse for the computer. You may hear physios and OTs describe these everyday activities as your ‘functional abilities’.

Another common thing for people with SMA is that their joints can tighten (called contractures). This can lead to pain and difficulty moving. If you’re unable to sit – or if you can sit but not walk – this may be something you’ve already had to manage. If you can walk, this may not be something that’s happened to you. Contractures tend to happen if your muscle weakness means you can’t move around so much, but again, it’s very individual.

Chapter 3, Physiotherapy and Rehabilitation in the SoC talks about different ways of helping to manage posture and movement challenges and how much and what sort of exercise people should do. It’s different depending on things like whether you can sit, stand or walk, how tired you get and what impact that has on you, what you’re finding particularly hard to manage and what’s possible for you and your family.

If you have regular appointments with a physio or OT, hopefully you feel comfortable asking them questions about anything you don’t understand, are finding difficult or that’s worrying you. If you don’t have a physio or OT, and / or if you’re worried about your posture and movement or have questions, talk to your parents and / or another member of your healthcare team to discuss if it would be a good idea for you to be referred to a physio. Referrals can take a while, so if you can, it’s always better to tell someone about your worries and questions sooner rather than later. As you’ve probably been told a hundred times before, most things are usually easier to tackle earlier on before they get worse.

It’s important that you maintain as much flexibility in your joints as you can manage so that you can be as independent as possible. The SoC recommend stretching muscles that are usually ‘tight’. Not all of these ways of doing this are OK for everyone, so it’s important to get advice that works for you, but possibilities include:

  • Gentle stretches – you’d be shown how to do these safely and you might be able to manage these yourself, but if you find them painful, you must talk to your GP or physio
  • Assisted stretches – when someone helps you with the movement
  • Braces and splints – are used to support parts of the body to help stabilise and promote movement.  You may hear them called orthoses (one orthosis, two orthoses). These include splints that you wear at your knee, ankle and foot (KAFOs – which stands for Knee Ankle Foot Orthosis) or at your ankle and foot (AFOs) or around your wrist, arm or hand.  A brace worn around your chest and spine is often called a spinal brace or spinal jacket. If you need any of these, they’re made-to-measure for you by a specialist called an orthotist, who you’d probably see at the orthotics clinic.

If you can, it’s important that you keep up with standing as it’s good for many things including your breathing, blood circulation, bladder, bowels, bones and joints. Your physio and OT can tell you more about how and why.

Standing frames can help with this, but only if your physio has said to use one.

Exercise and physical movement can also make a really positive difference. This needs to be at a level you can manage, so again it’s really important your physio helps you work out what’s right for you.

  • If you’re a non-sitter and have someone to help you, activities in warm water can be good.
  • If you’re a sitter, your exercises should be about maintaining and improving your strength, flexibility, how long you keep going (endurance) and balance. Your physio may suggest exercises which involve lifting increasing weight (resistance training), swimming, physio that involves horse riding (hippotherapy), and wheelchair sports. They will tell you how often and how long to exercise.
  • If you’re a walker, your exercises should also be about flexibility, strength, how long you keep going (endurance) and balance. Your physio may suggest exercises like swimming, walking, cycling, yoga, rowing, elliptical/cross trainers, physio that involves horse riding (hippotherapy), as suitable ways to exercise. They will advise you about how often and for how long.