Looking after your posture

It’s important to be aware of your posture when you have a muscle wasting condition. If you have trouble moving around or need support when you’re sitting, you may need care to help prevent problems with your posture.

Speak to your neuromuscular team if you have any questions about your posture or your care.

Muscle wasting conditions cause muscles to weaken over time. This can affect your posture. You might find it harder to sit up straight, stand tall, or stay balanced.

When some muscles become weaker, your body can rely more on other stronger muscles to move or stay upright. If one side of your body is weaker than the other, you might lean to one side or use the stronger side more. Over time, this can change your body shape into an uneven (asymmetrical) position. In a similar way, muscles can get tighter if they’re not fully used. As a result, you may tend to stay in one position most of the time. Gravity can also affect your body shape by pushing down on your body.

Changes to your body shape can lead to complications, such as:

• Discomfort and pain
• Extreme tiredness (fatigue)
• Tight muscles and stiff joints (contractures) or changes in joint position
• Curving of the spine, such as (sideways curve) or lordosis (inward curve)
• Problems lifting your head or keeping your neck in line with your spine
• Areas of damaged skin and tissue (pressure sores)
• Swallowing problems
• Breathing problems
• Difficulty passing poo (constipation)

Some people may need more care and equipment as their muscle weakness progresses. Sitting or lying down without support for a long time can worsen your posture. It can weaken the muscles in places like the back, tummy area, hips, and legs.

Looking after your posture can help lower the chance of having complications. It’s also important for managing contractures. This can make a big difference to your comfort, independence, and quality of life. You can start at any time – the earlier the better.

Postural care aims to protect and improve your body shape. It involves using equipment or movement to keep your body in a good position 24 hours a day.

If you notice any changes to your body shape or posture, ask your healthcare team or GP to refer you to a/an:

• Physiotherapist – a health professional who helps manage symptoms through movement, exercise, stretches and equipment.
• Occupational therapist (OT) – a health professional who can help you live as fully and independently as possible, for example by using equipment or supporting you to manage fatigue.
• Orthotist – a health professional who can give you devices, such as braces or splints, to help support weaker areas of your body.

A physiotherapist or OT can work with you to plan 24-hour postural care. They will look at all the positions your body is in during the day and night. They may work with an orthotist. They can suggest equipment and exercises to help you stay comfortable and in a balanced (symmetrical) position when you’re:

• Sitting – chairs or wheelchairs that suit your body shape can help you sit upright, support your joints, and help avoid pressure sores.
• Lying down – supports like wedges, rolls, and boards can help you lie comfortably on your front, back, or side. These can reduce joint pain and help you sleep.
• Standing – standing frames or supports can help you stand safely. This helps keep your bones strong, reduces pain, keeps your joints moving, and stretches your muscles.

Postural care can help to lower the chances of swallowing problems, chest infections, and digestion problems.

Many neuromuscular teams have a specialist physiotherapist. If yours does not, you can ask your GP to refer you to a local physiotherapist. If you live nearby or are able to travel, they could refer you to a specialist service such as the Neuromuscular Centre in Cheshire or the Muscular Dystrophy Support Centre in the Midlands.

Your GP or neuromuscular team can also refer you to an OT service for advice about postural care. Some neuromuscular clinics have specialist OTs. You can sometimes self-refer for an occupational therapy assessment through your local council.

If you feel your needs are not being met by your physiotherapist or OT, it’s good to talk to them about this first. If necessary, you can ask your GP for a referral to a different professional. This may take some time, but it’s important to get care that suits you.

Let your healthcare team know if there are any changes to your muscle wasting condition. They may need to change your care or equipment to fit your changing needs.

A physiotherapist or OT can assess you to find out what equipment would suit you best. They may work with an orthotist to suggest a range of equipment that allows you to change position throughout the day and night.

Having lots of new equipment in your home can feel confusing or hard to deal with at first. But it’s an important way of protecting your body shape and overall health. It can also help you take part in daily activities. Ask your healthcare team what each piece of equipment is for and how to use it.

Changes in your posture often happen gradually. You might not notice any changes until you see the physiotherapist or OT. Because of this, it can take some time to get used to any new equipment. If something doesn’t feel right, is uncomfortable, or you’re not sure how to use it, go back to your team. They can adjust it, explain things more clearly, or help find something that works better for you.

You may need to use the equipment for some time before you see the benefits. For example, using supports every night can result in less pain and better sleep. Small changes can make a big difference over time.

Funding for postural care equipment varies across the UK. Some people wait a long time or are not able to get all the equipment they need. Your physiotherapist or OT can tell you what equipment is available. They will also plan for any equipment you might need in the future. They may be able to help you look at other funding options too, such as charities or grant schemes.

If you care for someone with a muscle wasting condition, you may need to help them look after their posture. This might include helping them use equipment, change position, or stay comfortable.

The physiotherapy team may show you how to help the person do stretching exercises. These are important for posture and preventing joint contractures. The team will explain how long to hold each stretch and how many times to repeat them. They may have printed or online information to help you. Ask the physiotherapy team if you’re not sure how to do the stretches.

If the person you’re caring for has a postural care plan, it’s important that you’re involved in any conversations with the healthcare team. They can explain how equipment can help and how to use it safely. They will tell you how long the person needs to wear any devices, such as splints or braces. They can also talk to you about any questions or worries you may have about the person’s current or future needs.

Simply Emma – includes a blog about managing posture with muscular dystrophy

The Association of Paediatric Chartered Physiotherapists – has information for parents and carers of children receiving postural care

PAMIS – provides postural care information and training to families in Scotland