Ataxia

Ataxia is actually an umbrella term for a set of conditions with similar symptoms affecting speech, coordination and balance. There are different types of ataxia, which each affect the body and the person in a different way. Ataxia may be a long term and progressive condition for some people, whereas other people may experience it for short periods of time. Ataxia can occur in people of all ages, with some hereditary types being first diagnosed in childhood, and other types developing later in life. Ataxia is neurological and, currently, there is no cure, but there are treatments for ataxia symptoms which help manage the condition. This means that many people with an ataxia diagnosis are able to live full and active lives.

To find out more about what ataxia is, you may wish to read the Ataxia UK leaflet.

There are several types of ataxia which are defined by what causes ataxia symptoms. The most common cause is damage to the brain (specifically the cerebellum), the spinal cord or nerves through other illnesses (such as a stroke), injuries, or degeneration due to a genetic condition. People with multiple sclerosis or cerebral palsy may experience ataxia. It is also sometimes caused by excessive alcohol consumption and deficiencies in certain vitamins, such as vitamin E, or a reaction to gluten. Sometimes, a person may never discover what causes ataxia for them.

Many other conditions have similar symptoms so it can take some time to receive a diagnosis of ataxia and discover which type you have.

If you have symptoms of ataxia, a special doctor called a neurologist will try to find out the causes through assessing your abilities and difficulties, undertaking scans of your brain, taking the family history and perhaps genetic testing to ascertain if faulty genes are causing your ataxia.

For more information about the types and causes of ataxia, see the NHS website.

Some types of ataxia may lead to other symptoms such as diabetes, scoliosis or cardiomyopathy. Some people also experience incontinence, muscle spasms, muscle stiffness and eye problems such as oscillopsia.

Everyone will experience their condition differently, and a diagnosis of ‘ataxia’ does not mean you will have all of these symptoms.

If you feel you may be experiencing some of the symptoms listed here, speak to your GP.

The symptoms of ataxia are quite varied, and everyone will experience them differently. Some people may find their daily lives are not too affected by symptoms, whereas others may find they need some support to do certain tasks during the day. Many people with ataxia are able to lead full lives, going to school or college, working, travelling and so on. Some people will require full-time care and mobility equipment.

If you are having difficulties carrying out daily tasks due to your ataxia symptoms, you may wish to have an assessment from an Occupational Therapist (OT), which is usually possible through your local social services department. An OT is able to observe you undertaking tasks in the home, or when you are out, and may be able to suggest different ways to do things, which could include using products called ‘daily living aids’, to help you live independently. Depending on how much your ataxia is affecting your daily life and mobility, you may be entitled to receive free equipment from your local council to help you at home.

If you are considering purchasing your own equipment to support your needs, Healthcare Pro are experts in supplying daily living aids and have a team of OTs available to speak to you over the phone or by email. They may be able to suggest products that could help you live better with your ataxia symptoms. They can be contacted on 0345 121 8111 or by email productadvice@healthcarepro.co.uk

Here, we recommend products that could help with everyday tasks, which you may be finding difficult due to the most common ataxia symptoms:

There are lots of ataxia treatments available which often involve various healthcare professionals who support individuals with specific types of symptoms, so for example: a physiotherapist will help a person who has difficulties with balance and mobility; a speech and language therapist will help a person who has difficulty with speech, eating, swallowing, etc; and an occupational therapist may help if a person is having difficulties undertaking everyday tasks.

There are medications available to help control symptoms such as incontinence, muscle spasms, muscle stiffness and eye or vision problems.

Some people living with ataxia, or any other health care condition, may experience feelings of depression, anxiety or stress. If you are concerned that you or a family member may be experiencing any of these symptoms, speak to your GP for advice. There are many ways to help improve mental health, including cognitive behavioural therapy and mindfulness meditation. For more information, you could contact MIND, the mental health charity.

There is currently no cure for ataxia, but research is continuing and making progress. If you are particularly interested in ataxia research, find out more from the Ataxia UK website

Lots of people with ataxia are able to work in various careers and professions for many years after their diagnosis. There are charities that help people with disabilities to find employment. If you would like further information on your rights in the workplace, visit the Gov.uk website.

A healthy, varied diet with lots of fruit and vegetables is important for anyone with or without a health condition. There is no specific ataxia diet, but it is suggested that some foods and additives may exacerbate symptoms. For example, monosodium glutamate (MSG) and aspartame are thought to have a negative effect on balance in some people. Always consult your GP or neurologist before embarking on any dietary changes.

It is important for a person with ataxia to exercise regularly, and it may be helpful to discuss an exercise regime with a physiotherapist. Exercise will help increase strength, reduce muscle stiffness and may help improve balance, whilst also managing body weight.

These forums and support groups are friendly places where you can talk about ataxia and share your experiences with others.

Ataxia UK Forum – a community of people affected by Ataxia where you may share stories, advice and support

Living with Ataxia Support Network – open to people affected by ataxia who wish to connect with others in a similar situation

Ataxia UK – a leading charity for people with ataxia, which provides a wealth of information online as well as a range of support services such as a helpline and grants for aids, adaptations, travel etc

Action for AT (Ataxia-Telangiectasia) – a charity focussing on Ataxia Telangiectasia (AT), providing research into the condition and online information

AT Society (Ataxia-Telangiectasia) – a charity aiming to support people with Ataxia Telangiectasia (AT), which provides information, local specialist clinics and support grants

Brain & Spine Foundation – a charity providing support for people with neurological problems such as ataxia, with a helpline and informative publications

Contact a family – a charity which helps families with disabilities to come together and support each other online or face to face/locally, to find mutual support

Disabled Living Foundation – a charity providing information on how to choose aids and adaptations if you have a disability

National Ataxia Foundation (US) – an American site dedicated to ataxia, with information on the condition and research projects

NHS – source of medical advice on all types of ataxia and related conditions

Scope – a charity for people with disabilities, which provides a wealth of information about living with disability, such as finances, benefits, equipment etc, an online community and free helpline

Whizz Kids – a charity providing support to children with disabilities including finding them equipment, skills and training