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Ataxia

Everything you need to know about living well with ataxia

  • Introduction
  • Types
  • Symptoms
  • Daily Living
  • Support
  • Glossary

Introduction

This guide provides useful information if you are living with ataxia, think you are experiencing ataxia symptoms, or have recently been given an ataxia diagnosis.

You may be wondering, ‘what is ataxia?’ and looking for sources of ataxia support. NRS Healthcare are here to help you understand the condition and how to live well with it. Here, we cover various aspects including ataxia treatments, what products may help if you are living with ataxia, and where you can go for more detailed information and advice.

Introduction

What is 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.

What causes ataxia?

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.

Did you know... "Ataxia refers to a group of neurological conditions that affect balance, speech and coordination."

Main Types of Ataxia

There are many different types of ataxia.

Ataxia is a set of symptoms rather than a condition in itself, so there is usually an underlying condition that has caused the ataxia symptoms. Each type of ataxia is different and no two people will experience ataxia in the exact same way. It is important that you are diagnosed with the correct type of ataxia so that you can receive the right treatment where possible. Some types of ataxia are more serious than others. Some may be temporary and some may be permanent or get worse over time.

Introduction

There are many types of ataxia, broadly grouped into the following:

1. Acquired ataxia: caused by problems in the brain or nervous system, perhaps as a result of stroke, head injury, brain tumour or another condition such as multiple sclerosis

2. Hereditary ataxia: caused by genes that are ‘faulty’ and inherited from the person’s parents. There are different types of hereditary ataxia, caused by faults in different genes:

Friedreich’s ataxia is the most common type of hereditary ataxia and often first diagnosed in childhood or during teenage years. Symptoms may include heart problems, scoliosis, vision loss, diabetes and declining mobility

For more information on Friedreich’s ataxia, visit the Contact a Family website.

Ataxia-telangiectasia (AT) is usually diagnosed before the age of 25; this is one of the rarer ataxias but often progresses quite quickly. Young people with this condition may need to use a wheelchair at an early age and may be at higher risk of developing cancer. For more information on AT, visit the AT Society website.

Spinocerebellar ataxias are divided into several types according to the gene that is faulty. They are characterised by additional symptoms such as memory loss, language difficulties and muscle stiffness

Episodic ataxia is quite rare and occurs only occasionally, for a few minutes or hours. It is seemingly triggered by alcohol, caffeine, stress or exercise. This type of ataxia develops during adolescence and seems to get better over time

Ataxia with vitamin E deficiency has symptoms which are similar to those of Friedreich’s ataxia, but are caused by the body’s inability to use vitamin E, which protects cells, maintains healthy eyes and bone and muscle strength

3. Idiopathic late-onset cerebellar ataxia (ILOCA) occurs due to progressive damage to the brain, although the cause of this type of ataxia is often unclear. Possible causes include infection, brain lesions or tumours, brain malformations (at birth) and metabolic disorders. This type of ataxia is associated with being very unsteady and characterised by the person developing significant coordination and balance difficulties

4. Gluten ataxia is a type of ataxia caused by the body's reaction to gluten, which is consumed in bread and other wheat, barley or rye products. The body’s immune system causes damage to the cerebellum

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.

Did you know... "Genetics, brain injuries or conditions such as cerebral palsy, may cause ataxia."

Symptoms of Ataxia

Read on to find out the symptoms of ataxia.

Each person with a diagnosis of ataxia will experience their symptoms differently. Each type of ataxia may present slightly different symptoms and not everybody gets all of the symptoms we discuss below. A person's symptoms develop differently and may affect their life to different degrees but many people live well with ataxia symptoms.

Introduction

There are many different symptoms of ataxia including difficulty with:

• Balance and coordination i.e. you may feel you have become ‘clumsy’ and fall over more often than you used to

• Walking: getting around may be made more difficult, or you may be at risk of falling due to balance difficulties

• Swallowing food, drink or saliva

• Talking: you may have dysarthria (slurred speech)

• Controlling some parts of the body e.g. your hands may shake when you are eating or writing

• Tiredness

• Blurred vision or other sight problems

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.

Did you know... "People of different ages can develop ataxia."

Living with Ataxia

Here we discuss several aspects of living with ataxia, including products that may help make daily tasks easier, ataxia treatments, and exercise for ataxia. We also suggest sources of ataxia help and support.

If you would like to hear first-hand experiences of people who are living with ataxia, take a look at the selection of videos available on the Ataxia UK website.

If you are a parent of a child or young person with ataxia, you are likely to have concerns about how their condition will affect their childhood, education and independence as they get older. Ataxia UK provide a leaflet specifically for parents which may help you.

Introduction

Impact on daily living

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, NRS Healthcare 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 [email protected]

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

Balance and coordination:

o Grab rails can be fitted to walls inside and around the outside of your home to help provide support if you are at risk of trips or falls

o A household trolley can help carry items around your home (these are not to be used as walking support)

o Safely using the toilet, showering or bathing can be difficult if you have issues with balance. Toilet frames provide support when sitting and rising

o Shower seats allow you to sit whilst showering without risk of falling

o Bath lifts lower you into the bath safely and raise you back up again to avoid bending and stretching

Walking and mobility:

o If you have difficulty getting around, there are many types of mobility aids that can assist you including rollators, walking frames and walking sticks

o Some people with ataxia may find they need to use a wheelchair or transit chair

Swallowing:

o There are a large number of drinking aids that can help make drinking easier

Tremors when eating and drinking:

o If you experience tremors in your hand, you may find weighted cutlery or a non-spill cup help make eating and drinking easier

If you are unsure which products might help you, speak to an NRS Healthcare Occupational Therapist for further advice.

Ataxia treatments

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

Ataxia and employment

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.

Ataxia diet

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.

Ataxia exercise

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.

Did you know... "Ataxia is relatively rare, and many individuals with the condition are able to lead full lives."

Support for Ataxia

Remember - you are not alone!

We hope this guide to ataxia has helped you understand the condition more. Many people live well with ataxia but the symptoms can present challenges to daily life. Many people report that they find it helps to talk to other people with ataxia, to share their experiences, advice, etc. Here, we list some online communities where you can meet people in similar situations to yourself. We also list other online resources that may help you understand the condition further and which provide ataxia help and ataxia support services. If you are concerned about anything you read in this guide, please discuss with your GP.

Introduction

Communities

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

Resources

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

Did you know... "There are daily living aids available to help people with ataxia."

Glossary

Unsure what something means? Checkout our Glossary section below.

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology.

Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of ataxia as straightforward as possible.


Introduction

Cardiomyopathy

– the medical term for heart disease, where the heart muscle stiffens or thickens

Cerebellum

– this is found at the brain’s base, and is a fairly small part that controls motor control, and therefore balance, coordination, speech, movement

Dysarthria

– is when brain damage or changes to the brain cause speaking difficulties such as slurring words

Genetic testing

– a laboratory, medical testing procedure that analyses a person’s blood to look at their DNA and genetic make-up to find out if a person has or may develop a genetic condition

Metabolic disorders

– caused by chemical problems in the body that affect how molecules are broken down

Neurologist

– medical doctor responsible for treating the nervous system i.e. the brain and spinal cord

Oscillopsia

– a visual problem caused by neurological conditions, which causes strange sight problems such as blurred eyesight or jumping vision

Scoliosis

– a condition where the spine curves


Last updated on 05/02/2019

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