Ataxia

Living with the effects of a brain injury can be challenging. Life can change very suddenly, and in many different ways. Emotions such as frustration, anger, sadness, depression, anxiety or a sense of loss and longing for the ‘old life’ are very commonly felt by many brain injury survivors.

If ataxia, or any other effects of brain injury, are having an emotional impact on your life, remember that help is available.

You should also talk to your GP if you are having a difficult time with your emotions. They may be able to prescribe medication or refer you to helpful services such as talking therapies or neuropsychology services.

Many people find it difficult to return to work after brain injury. Ataxia can interfere with many work-related skills such as being able to move around safely, manual handling, speaking, reading and/or typing/writing.

If you have a disability, you are entitled to ‘reasonable adjustments’ to be made within the workplace to help you with your role. Employers are legally obliged to make these adjustments, which could include things such as:

• providing specialist equipment

• improving accessibility around the building

• re-locating an employee to be nearer to required facilities such as toilet

• adjusting working hours to make them more suitable for the employee

• adjusting responsibilities to make them more suitable for the employee

These arrangements may be helpful for brain injury survivors with ataxia.

Various muscles are used simultaneously when driving a car, such as using muscles in hands to steer the wheel and using muscles in legs to operate the foot pedals. Muscles in the eyes are also used to see the route, the road and hazards when driving.

Ataxia can affect the control and coordination of these muscles, interfering with a brain injury survivor’s ability to drive. The survivor may no longer be able to drive, or may need vehicle adaptations to be made to continue driving safely.

It is a legal duty to report any illness or injury that may affect driving to your vehicle licensing agency. Failure to do so can result in heavy fines and license points, as well as carrying a serious risk of injuring or hurting someone.

A fitness-to-drive test may be needed to assess a survivor’s safety and suitability to continue driving.

After the test, it may be decided that the survivor can carry on driving. This may be on the condition that they use adaptive vehicles that make it safer or more comfortable for them to drive, such as hand steered or automatic cars.

Other survivors may no longer be considered safe to drive. They may lose their driving license or have it temporarily suspended. This can be very upsetting and may cause practical challenges, but it is very important to recognise that this decision is made to keep the survivor and others safe.

Many of the skills needed to communicate and socialise with others rely on muscle control and movement. Talking to friends or others might be difficult due to issues such as slurred speech. It may be difficult to access certain places if the brain injury survivor’s balance or walking are affected. Hobbies or activities that the survivor enjoyed with friends or family may no longer be safe or comfortable for them to do.

Friends, family, colleagues and others should consider making adjustments so that the survivor can continue to take part in social activities, such as changing the types or location of activities to make it easier and safer for the survivor to get involved.

Researching the accessibility of places beforehand, or availability of toilets nearby, can also help with planning social events.

If crowded places are especially problematic, consider contacting places in advance to find out when their quieter hours are.

It can also be helpful to remember that many people are not aware of what a brain injury is and how it can affect someone. Being open and honest about how your brain injury has affected you can help others in your life to understand how they can best support you, which may help with social activities.

Ataxia may affect the ability to write, and it may be necessary for brain injury survivors to use alternative methods of writing where needed.

Fortunately, there are many digital alternatives available nowadays such as typing, recording or text-to-speech functions. There are also adaptive pencils, pens or styluses that may make writing more comfortable.

There are different procedures in place for people who cannot sign legal documents due to a disability, depending on the type of legal document, such as signing a will or a deed. You should seek advice from a legal representative in these instances.

Handling objects such as knives or hot pans while cooking can be dangerous with ataxia, as the brain injury survivor may lose control and accidentally hurt themselves.

Adaptive equipment in the kitchen can help to keep the survivor safe.

Recipes can also be chosen carefully to minimise risk of harm.

Ready chopped ingredients may be a helpful option.

Occupational therapists might be able to advise on techniques and equipment that can make cooking safer for brain injury survivors with ataxia.

Ataxia can affect the ability to bring food up to the mouth, which can make eating difficult.

A brain injury survivor might be at risk of burning themselves if they spill hot food or may need to frequently clean or change their clothes.

Occupational therapists might be able to advise on adaptive cutlery or equipment to help.

We also use our muscles to chew and swallow, so ataxia can put survivors at risk of choking. Speech and language therapists can devise modified diet plans that can minimise the risk, for example including only soft foods in the survivor’s diet.

The processes of planning a holiday and travelling after brain injury can be made easier by researching in advance, planning and arranging for support where needed.

Many holiday providers offer support, packages, or accommodation for people with disabilities, while several disability specific holiday organisations also exist. There are also many websites available to help you with understanding the accessibility of different holiday destinations.

It might be necessary to notify rail line, coach, ferry or airline companies in advance of any adjustments or special assistance needed with travel.

Remember to notify any travel insurance providers of ataxia or any other circumstances related to your brain injury that might affect your cover. You might need to specify to them that you have acquired ataxia, as opposed to other forms of ataxia.

There are many muscles involved in the process of speech (i.e. talking). Ataxia can cause problems with controlling these muscles, which can in turn affect communication.

Speech might become slurred, or it might be harder for the brain injury survivor to form words that they want to say. The survivor may struggle to join in with conversations or express their preferences or opinions. Trying to make themselves understood can be tiring, upsetting and frustrating.

It can also be difficult for others communicating with the survivor if they are unable to understand what the survivor wants to say.

Speech and language therapists can help brain injury survivors by suggesting strategies and exercises to improve speech.

Communication aids such as letter boards or Augmentative and Alternative Communication (AAC) devices may be helpful.

Sometimes, with practice, people who spend a lot of time with the survivor can learn to ‘tune in’ to their speech over time.

For some types of ataxia, ‘voice banking’ may be considered.