Managing your nutrition

Eating a healthy, balanced diet is important for everyone. It gives your body the nutrients it needs to work well and can help you feel your best.

Good nutrition can:

• Help muscles work as well as possible
• Keep bones strong
• Support your immune system every day and when you’re ill
• Improve energy levels
• Support your mental health

The NHS has advice on what makes a healthy balanced diet.

When you have a muscle wasting condition, staying at a healthy weight supports your body. Being underweight can make you feel weaker and more tired. But being overweight can put extra strain on your muscles, joints, and breathing. Your neuromuscular team can help you or your child find and keep a healthy weight.

Eating well also supports healthy growth and development in children with muscle conditions.

Tracking weight can help show if you’re getting enough nutrition, but standard charts may not be accurate for people with muscle wasting conditions. This is because they’re based on typical muscle mass. So you might weigh less because of reduced muscle but still be well-nourished.

BMI (Body Mass Index) is another common way to check a healthy weight, but it might not be accurate for you because it’s based on people with typical muscle mass.

Measuring height can also be difficult if you use a wheelchair or cannot stand easily. Healthcare professionals might use other methods, like arm span or tracking changes over time.

Measuring weight can also be tricky if you use a wheelchair. It’s helpful to know the weight of your wheelchair so you can be weighed on a wheelchair scale, if one is available.

You can gain weight if you eat more calories than you use. With a muscle wasting condition, you may gain weight more easily because:

• You move less, so use less energy
• You have weaker or smaller muscles, so you burn fewer calories even at rest
• You might use ventilation, which can reduce how many calories you burn
• Some medicines, like steroids, increase appetite

Why extra weight matters

Extra weight makes your muscles work harder and can affect your breathing and heart health. Over time, it may raise your risk of other problems like diabetes, high cholesterol, and high blood pressure. Managing weight can help you feel more comfortable and support your overall wellbeing.

How to manage your weight

Talk to your neuromuscular team or GP about your or your child’s weight. There are different ways to reach a healthy weight. Ask your GP for a referral to a dietitian or check if there are any weight management services in your area.

Stay active

You can try to stay active in ways that work for you – like gentle stretches, swimming, adapted Pilates, or resistance band exercises. A physiotherapist can recommend safe options suited to your needs. We know that exercise can be difficult when you have a muscle wasting condition – we have exercise advice for adults.

Children might enjoy fun, low-impact activities like hydrotherapy or movement-based games. A physiotherapist can help you find the right options.

Eat well

Eating a balanced diet helps. Try smaller portions, healthy snacks, and gradual changes.

The NHS Eatwell Guide is a good place to start.

The Healthier Families section on the NHS website also explains healthy eating and has useful recipes.

A dietitian can help you set realistic goals and support you. Managing weight can be tough emotionally and physically. Talking to your healthcare team, a counsellor, or support group can really help.

IMPORTANT: Always speak to your healthcare team before making big changes to your diet or exercise. They can guide you safely and monitor your progress.

You may become underweight if you use more energy than you get from food, or find it hard to eat enough. This can affect your strength and energy.

Some people with muscle wasting conditions are naturally lighter because they have less muscle. But it’s still important to get the right nutrition to stay well.

Why you might be underweight

• Feeling too tired to prepare or chew and eat meals
• Illness or infections increasing energy needs
• Swallowing difficulties (dysphagia)
• Feeling full quickly or reduced appetite
• Trouble sitting comfortably at mealtimes
• Breathing problems at night leading to tiredness and poor appetite
• Breathing problems causing you to use more energy to breathe
• Emotional or social reasons, like anxiety around eating

Getting specialist support

A specialist team can help you or your child:

• A dietitian checks your weight, growth, and diet, and helps plan nutritious meals, snacks, and drinks
• A speech and language therapist assesses swallowing and suggests safer ways to eat
• A physiotherapist or occupational therapist can improve comfort with posture or equipment
• A psychologist or counsellor offers support if eating feels stressful or emotional

Ways to improve nutrition

There are different ways to boost nutrition if you or your child are not eating enough. Your healthcare team can help find the right approach. This might include:

Making food more nourishing

• Eat little and often – small meals and regular snacks
• Choose energy-rich foods – like full-fat yoghurt, cheese, peanut butter or milkshakes
• Add extra calories – use things like butter or cream

Using supplements

Your GP or dietitian may suggest supplements. This could be special drinks (e.g. milkshakes) or powders that add extra energy, protein, or vitamins and minerals. These supplements are usually taken alongside regular food, not as a replacement.

Feeding tubes

If eating becomes too difficult or unsafe, your team might suggest a feeding tube. These deliver food, fluid, or medication directly into the stomach.

• Nasogastric (NG) tube – goes through the nose into the stomach, usually short-term during a serious illness
• Gastrostomy (PEG) – goes straight into the stomach through the tummy, for longer-term support

This may feel scary, or like a big step, but feeding tubes can be a helpful way to make sure you get the nutrition you need safely and comfortably. They are discreet and feeding plans can be adapted to suit you and your daily activities. We have more information on our gastrostomy page.

With the right support, many people improve their nutrition, maintain a healthy weight, and feel stronger. Always make changes carefully with professional guidance to stay safe, and do not hesitate to ask your healthcare team or dietitian if you need help or advice.