When SMA weakens muscles it can make everyday tasks difficult. These include getting up, dressing, using the toilet, and holding cutlery, a pen, or a computer mouse. Physios and OTs describe these everyday activities as your ‘functional abilities’.

People with SMA often have tight joints. If muscles are permanently tight, the joint becomes rigid and stiff (contractures).  This can lead to pain and difficulty moving.

Your physio and OT will advise you what exercises, activities and aids or equipment will help with any challenges you have.  You can ask them questions about anything you don’t understand, are finding difficult or that is worrying you.

If you don’t have a physio or OT, and are concerned about how you are doing, talk to your parents and / or another member of your healthcare team about getting a referral to one. Referrals can take a while, so the sooner you can get on to it the better.

It is important that you keep your joints as flexible as you can. This will help you be as independent as possible. The SoC recommend stretching muscles that are usually tight. There are different ways of doing this. Not all of these are OK for everyone, so it is important to get advice from your physio. Possibilities include:

• Gentle stretches – you would be shown how to do these safely. You might be able to manage these yourself. If you find them painful, you must talk to your physio or GP
• Assisted stretches – when someone helps you with the movement
• Braces and splints – 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 – 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 are made-to-measure for you by a specialist orthotist. You would probably see them at an orthotics clinic.

If you can, it is important that you keep up with standing. It is 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. They will tell you when to use it and for who long.

Exercise and physical movement can also make a really positive difference. This needs to be at a level you can manage. It is important your physio helps you work out what is right for you.

• If you are unable to sit without help and have someone to assist you, activities in warm water can be good.
• If you are able to sit, your exercises should be about maintaining and improving your:
  • strength
  • flexibility
  • how long you keep going (endurance)
  • balance.

Your physio may suggest:

• • exercises which involve lifting increasing weight (resistance training)
  • swimming
  • physio that involves horse riding (hippotherapy)
  • wheelchair sports.

They will tell you how often and how long to exercise.

• If you are able to walk, your exercises should also be about:
  • strength
  • flexibility
  • how long you keep going (endurance)
  • balance.

Your physio may suggest exercises like:

• • swimming
  • walking
  • cycling
  • yoga
  • rowing
  • elliptical or cross trainers
  • physio that involves horse riding (hippotherapy).

They will advise you how often and for how long.