Cerebellar ataxia: rehabilitation, therapy and day-to-day management

Ataxia is a term for a group of disorders that affect co-ordination, balance and speech. The NHS says any part of the body can be affected, but people with ataxia often have difficulties with balance and walking, speaking, swallowing, tasks that need a high degree of control such as writing and eating, and vision.

It usually results from damage to the cerebellum, the part of the brain involved in co-ordination, although other parts of the nervous system can also be involved. The NHS groups ataxia into acquired ataxia (for example after trauma, a stroke, multiple sclerosis, a brain tumour or nutritional deficiencies), hereditary ataxia (caused by faulty genes passed on in families, the most common type being Friedreich’s ataxia) and idiopathic late-onset cerebellar ataxia, where the brain is progressively damaged for reasons that are unclear.

Because there is usually no way to reverse the underlying damage, rehabilitation is the centre of care. The aim is to keep as much function, independence and comfort as possible for as long as possible, and to solve practical problems as they arise.

According to the NHS, treatment for ataxia depends on the type. You will usually be cared for by a multidisciplinary team (MDT), which works with you to produce a care plan. The team will probably include a neurologist, a physiotherapist and a specialist nurse, among others.

The NHS says your physical, social and psychological needs will be assessed, and that the plan will outline how these needs can best be met and will address any future needs. You will normally have regular appointments with the MDT or your GP to review progress, and in some cases you may be seen in a specialist ataxia centre.

The charity Ataxia UK is named by the NHS as a source of information about ataxia services and as a resource for people who have recently been diagnosed.

The NHS lists three main therapy strands. Each addresses different day-to-day problems and each can change over time as symptoms change.

• Physiotherapy: the NHS says it can help you maintain the use of your arms and legs and prevent muscles weakening or becoming stuck in one position (contractures). A physiotherapist can teach daily exercises to strengthen and stretch muscles and may recommend walking aids.

• Speech and language therapy: for slurred speech (dysarthria) and swallowing problems (dysphagia). The NHS says a therapist may suggest changing posture, strengthening exercises, speaking more slowly and breathing techniques, and, if speech gets worse, aids such as a laptop connected to a voice synthesiser. For swallowing, they can teach exercises, and you may be referred to a dietitian for food that is easier to swallow.

• Occupational therapy: the aim is to help you adapt to gradual loss of mobility and develop new skills for daily activities. The NHS says an occupational therapist can teach wheelchair and mobility device use and advise on home adaptations such as guide rails or a stair lift.

Beyond therapy, the NHS describes treatments for particular problems. You may not have all of these symptoms. They are summarised below so you know what to ask your team about.

In a few cases the NHS says it is possible to improve ataxia or stop it getting worse by treating the cause. Examples it gives are ataxia caused by vitamin E deficiency, which can often be controlled or improved with vitamin E supplements, and episodic ataxia, which can often be controlled with a medicine called acetazolamide and by avoiding triggers such as stress, alcohol and caffeine.

Some acquired ataxia can be treated depending on the specific cause, such as antibiotic or antiviral medication if it is caused by an infection. If acquired ataxia is caused by serious brain damage, for example from a stroke or severe head injury, it may not be possible to improve the condition, and the symptom treatments above are used.

This is one reason an accurate diagnosis matters. A neurologist can look for causes that are treatable before focusing on rehabilitation alone.

The NHS says outlook can vary considerably and largely depends on the type of ataxia. Some types may remain relatively stable or even improve with time, but most will get progressively worse over many years. For hereditary ataxia, it says life expectancy is generally shorter than normal, although some people live well into their 50s, 60s or beyond. For acquired ataxia, the outlook depends on the underlying cause.

Living with a long-term condition can be stressful. The NHS says it can cause intense feelings of anxiety and can trigger depression, and it advises contacting a GP or the MDT if you think you may be depressed. It also recognises that fatigue is very common in neurological conditions, partly through disturbed sleep and the physical effort of coping with loss of co-ordination.

Practical steps include asking for a review if your needs change, because therapy and equipment can be adjusted over time, and using charities such as Ataxia UK for peer support and information.

Ataxia care in the NHS runs through the GP, a neurologist, community therapy teams and, for some people, a specialist ataxia centre. Therapy is usually delivered in community or outpatient settings.

Some people also pay privately for additional physiotherapy or a second neurological opinion. Because a multidisciplinary plan is central, it is sensible to make sure any private therapist is in touch with your NHS team so the advice stays consistent.