Your treatment plan
You'll usually be cared for by a group of healthcare professionals called a multidisciplinary team (MDT), who will work with you to come up with a care plan. Your MDT will probably include a neurologist, physiotherapist and specialist nurse, among others.
Your care plan will play an important part in the management of your condition. Your physical, social and psychological needs will be assessed, and the plan will outline how these needs can best be met. The plan will also address any future needs you may have.
You'll normally have regular appointments with your MDT or GP to review your progress. In some cases, you may be seen in a specialist ataxia centre.
Treating the symptoms
Treatments for the various symptoms of ataxia are discussed in the following sections, although you may not experience all of the problems described.
Speech and language therapy
The therapist will be able to advise you about how to make your voice sound clearer. For example, they may suggest:
- changing your posture to improve the quality of your voice
- carrying out exercises to strengthen the muscles used when speaking
- speaking more slowly to emphasise each word
- using breathing techniques to improve your speech
If your speech gets worse, you may want to consider using speaking aids such as a laptop computer connected to a voice synthesiser. Your therapist will be able to advise you about the equipment available.
To treat dysphagia, your therapist will be able to teach you exercises to stimulate the nerves used to trigger your swallowing reflex and strengthen the muscles used when swallowing.
You may also be referred to a dietitian for dietary advice. For example, your diet may need to include food that's easier to swallow. Read more about treating dysphagia.
The aim of occupational therapy is to teach you how to adapt to your gradual loss of mobility and develop new skills you can use to carry out daily activities.
An occupational therapist may be able to teach you how to use a wheelchair and other mobility devices. They can also advise you about modifications you can make to your house, such as installing guide rails or a stair lift, to help make your life easier.
If you have ataxia, physiotherapy can help you maintain the use of your arms and legs, and prevent your muscles weakening or getting stuck in one position (contractures).
A physiotherapist will be able to teach you a number of physical exercises you can do every day to help strengthen and stretch your muscles. They may also be able to recommend walking aids to help you get around.
If you're experiencing muscle spasms, cramps and stiffness, muscle relaxant medication such as baclofen or tizanidine may be used to control these symptoms.
If these aren't effective, an injection of botulinum toxin (Botox) may be given. This works by blocking the signals from your brain to the affected muscles. The effects of the injection will usually last for up to 3 months.
Bladder problems, such as urinary urgency or, more rarely, urinary incontinence, sometimes affect people with ataxia.
In some cases, bladder problems can be controlled using a number of self care techniques, such as limiting fluid intake during the day, planning regular trips to the toilet, and avoiding drinks known to stimulate urine production, such as caffeine and alcohol.
Some people may also require a type of medication known as antimuscarinic. This will help relax the bladder, reducing the frequent urge to urinate. Occasional injections of botulinum toxin into the bladder may also help.
Others may find it difficult to empty their bladder completely when they go to the toilet. This can lead to small amounts of urine leaking out later on. In such cases, it may be necessary to insert a small tube known as a urinary catheter into the bladder to help drain the urine.
Eye problems are common in some cases of ataxia. Oscillopsia is an eye problem caused by involuntary movement of the eyes from side to side or up and down. It can cause visual disruption, making tasks such as reading difficult. This can sometimes be treated using medication such as gabapentin to control the muscles that move the eyes.
Some people with ataxia experience double vision, where you see 2 images of a single object. It may be possible to treat this by attaching a wedge-shaped piece of glass or plastic called a prism to your glasses.
As a result of underlying nerve damage, some men with ataxia will experience difficulty getting or maintaining an erection (erectile dysfunction).
This can often be treated using a group of medications known as phosphodiesterase-5 (PDE-5) inhibitors, such as sildenafil (sold as Viagra). These help increase blood flow to the penis.
Read more about treating erectile dysfunction.
Many people with neurological conditions such as ataxia report feeling extremely tired and lethargic (lacking in energy). It's thought this is partly caused by disturbed sleep and the physical efforts of having to cope with the loss of co-ordination.
A physiotherapist may be able to help you increase your stamina levels, and an occupational therapist can advise you about how to adapt your daily activities to help you cope with fatigue better.
Read more about coping with fatigue.
Damage to the nerve endings can result in nerve pain. The medical term for nerve pain is neuropathic pain, which is often experienced as a burning, aching or shooting pain, or sometimes tingling, in certain parts of the body.
Traditional painkillers such as paracetamol or ibuprofen aren't usually effective in treating neuropathic pain, so you may be prescribed a number of medications, such as amitriptyline, gabapentin or pregabalin.
Read more about treating neuropathic pain.
Cardiomyopathy (damage to the heart muscle) is a common problem in some types of ataxia. This can be serious as it can place strain on the heart, affect the normal blood flow through the heart, and cause heartbeat irregularities (arrhythmias).
If you develop cardiomyopathy, you'll receive regular check-ups from a cardiologist (a heart specialist). You may need to take medication to treat any problems as they develop.
Living with a long-term condition such as ataxia can be stressful and can often cause intense feelings of anxiety. In some cases, this can trigger the onset of depression.
Signs that you may be depressed include feeling down or hopeless during the past month and no longer taking pleasure in the things you enjoy.
You should contact your GP or MDT for advice if you think you may be depressed. There are several treatments for depression, such as antidepressants and talking therapies such as cognitive behavioural therapy (CBT).
You may also find it useful to contact Ataxia UK, a leading charity for people affected by ataxia. Their helpline number is 0845 644 0606, open Monday to Thursday, 10.30am to 2.30pm.
Treating the underlying cause
In a few cases of ataxia, it may be possible to improve the condition or stop it getting worse by treating the underlying cause.
- ataxia with vitamin E deficiency can often be controlled or improved with vitamin E supplements
- episodic ataxia can often be controlled with a medication called acetazolamide and by avoiding triggers such as stress, alcohol and caffeine
- acquired ataxia can sometimes be treated depending on the specific cause – for example, antibiotic or antiviral medication may help if it's caused by an infection
If acquired ataxia is caused by serious underlying brain damage, such as damage from a stroke or a severe head injury, it may not be possible to improve the condition. If this is the case, the treatments mentioned above can be used to control your symptoms.
Ataxia UK is a charity for people living with ataxia.
It provides information about a number of ataxia services that are available and is a useful resource for those who've recently been diagnosed with the condition.
The charity's helpline number is 0845 644 0606 (Monday to Thursday, 10.30am to 2.30pm). You can also contact them by email: firstname.lastname@example.org