Food, Nutrition and Supplements for Spinocerebellar Ataxia

Being diagnosed with spinocerebellar ataxia (SCA) can leave people looking for anything they can do to help themselves, and diet is a natural place to start. Eating well genuinely matters for staying strong and safe. But it is important to be clear about what the evidence shows: no food, diet or supplement has been shown to slow down or reverse SCA. Be wary of products that promise to.

This page explains what good nutrition can do, the specific situations where a supplement does help, and what to discuss with your doctor.

Why nutrition matters in SCA

Good nutrition can help people with SCA:

• Keep up energy and muscle strength, which supports balance, walking and physiotherapy
• Maintain a healthy weight. Some people lose weight as eating becomes harder or more tiring, while reduced mobility can lead others to gain weight. Both can make movement and care more difficult.
• Keep bones strong, which matters more when falls are a risk
• Avoid constipation, which is common when mobility is reduced

A balanced, practical diet

There is no special "SCA diet". The general advice for good health applies:

• Plenty of vegetables, fruit and wholegrains, which also provide fibre
• Protein at each meal, such as fish, eggs, beans, lentils, poultry or lean meat, to help maintain muscle
• Calcium-rich foods such as dairy or fortified alternatives, plus vitamin D (in the UK, a daily vitamin D supplement is recommended for many people in autumn and winter, and all year for those who rarely go outdoors)
• Enough fluids through the day
• Limiting sugary and highly processed foods

Alcohol

Alcohol directly affects the cerebellum and makes unsteadiness and slurred speech worse, even in small amounts. Many people with ataxia find that cutting down or avoiding alcohol helps.

Swallowing difficulties

Swallowing problems (dysphagia) are common as SCA progresses, and they are one of the most important nutrition issues. They can cause coughing or choking at meals and can lead to chest infections if food or drink goes into the airway. Signs to watch for include coughing during or after eating, a wet or gurgly voice after swallowing, meals taking much longer, or unexplained weight loss.

A speech and language therapist can assess swallowing and recommend safer techniques, changes to food textures or thickened drinks. Sitting upright, eating slowly in small mouthfuls, and avoiding distractions at mealtimes can all help. If eating becomes very difficult, a dietitian can advise on keeping nutrition up.

Occupational therapists can also suggest adapted cutlery, plates and cups that make eating easier when hand coordination is affected.

Supplements: what the evidence shows

For most people with SCA, supplements have not been shown to change how the condition progresses. In a large US study of 319 people with SCA1, SCA2, SCA3 and SCA6, taking coenzyme Q10 or vitamin E did not change the rate of decline over two years.

There are some important exceptions where supplements are a genuine treatment, which is why proper diagnosis matters:

• Vitamin E deficiency. Low vitamin E can cause or worsen ataxia, for example due to poor absorption from the gut. A rare inherited condition, ataxia with vitamin E deficiency, is treated with high-dose vitamin E. Vitamin E supplements have not been shown to help people whose levels are normal.
• Coenzyme Q10 deficiency. Some rare inherited ataxias are caused by a lack of coenzyme Q10. In these conditions, high-dose coenzyme Q10 can stabilise or improve symptoms.
• Gluten ataxia. In this condition, an immune reaction to gluten damages the cerebellum, and a strict gluten-free diet can help. A gluten-free diet is not useful for genetic SCA unless gluten sensitivity has been confirmed.
• Vitamin B1 (thiamine) and vitamin B12 deficiency can also cause problems with balance and nerves and should be corrected if found.

If you are unsure whether any of these apply, ask your doctor about checking vitamin levels and other relevant blood tests. This is more useful than taking a range of supplements "just in case".

Talk to your doctor before taking supplements

Some supplements can interact with medicines or cause side effects at high doses. Always tell your doctor or pharmacist what you are taking. There is no evidence that "detox" products such as clays, juices or algae remove anything harmful in SCA, and they are best avoided.

Research into treatments for SCA is ongoing, and clinical trials are the best way to find out whether a new approach really works. Ataxia charities and specialist ataxia centres can tell you about current trials.