SMA can cause weakness in swallowing muscles. This affects how easily food moves through the digestive system. For some, eating difficulties can mean they do not get enough food and become underweight. For others, muscle weakness makes it difficult to exercise and they become overweight. Extra weight can increase the stress on muscles, bones and joints. It makes physical activity and breathing even more difficult.

These difficulties are more common for people who are ‘non-sitters’ or ‘sitters’ but not so common for ‘walkers’. They don’t all happen to everyone. As always with SMA, everyone is different .

Due to weak muscles , people can:

• have problems with reflux. This can feel like an uncomfortable burning sensation in the chest or throat
• be sick after eating
• have difficulty going for a poo (become constipated). Constipation can lead to feeling uncomfortable and a fullness in the stomach that reduces the movement of the diaphragm. This is the dome-shaped muscle below the lungs. It is important for breathing in. This can make it more difficult to breathe and cough
• have problems with their ability to break down foods to produce energy (their metabolism). They may have high or low blood sugar and / or problems with breaking down fat.
• have difficulty swallowing safely. If you do, this can feel frightening. It may mean you are at risk of ‘breathing in’ food or drink (aspiration). This can make you choke and possibly cause a chest infection.

If you are a ‘sitter’ or a ‘non-sitter’, you should see a dietitian regularly. They should check your growth, weight and diet and advise you how to keep healthy.

If you are a ‘walker’, you only need to see a dietitian if you are putting on a lot of weight, or not putting on enough weight. A dietitian can work out a healthy and comfortable weight for you. They can advise and support you to reach and maintain this.

Eating can be hard work and take a lot of energy. If you have difficulties, your medical team may advise you on:

• best positions for eating and drinking
• foods to avoid because they are more difficult to chew and swallow
• possibly having puréed food or a semi-solid diet, which will also help reduce the length of mealtimes
• possibly having thicker liquids when drinking, such as milkshakes, to help you avoid aspiration.

Some people have found the following equipment helpful:

• Valved straws which reduce the effort of drinking. They keep the liquid at the top of the straw
• Elbow supports: The Neater mobile arm supports enables people to use their own movements to feed themselves. Other companies make similar aids.

People who have  difficulties with swallowing have a swallow test (called a video fluoroscopic swallow study). Some people have one of these two temporary ways of having food through their nose:

• a nasogastric (NG) tube which then goes into your stomach, or
• a nasojejunal (NJ) tube which goes through the small intestine.

A longer-term option that is recommended is a gastrostomy tube or PEG endoscopy. This is when a tube is surgically put through the skin and into the stomach.

These additional ways of having food are especially important if you have difficulty putting on weight. If you have one of these tubes but can still swallow safely, it is still good to have some food by mouth.

Your medical team may suggest more fluid and fibre in your diet. Medication can also help.

People who are ‘non-sitters’ and ‘sitters’ are not able to use bones and muscles as much as someone who can walk. Bones are weaker and more likely to break (osteoporosis). There is more risk of bone fractures. To help prevent this, it is really important to have enough calcium and vitamin D3 in your diet.

If it is possible for you and agreed by your physio, standing has several benefits for health. See Posture, Movement & Exercise >.