What is Ataxia?

Cerebellar Ataxia is a progressive neurological disorder that affects your balance and co-ordination. It also affects messages to your voluntary muscles (ie the ones you use when you think about doing something – moving arms, standing up to walk, speaking).

As every thing we do requires some level of co-ordination between brain and body, this means ataxia can affect many areas in a persons daily life.

This means some people with ataxia may have a constant tremor (similar to parkinsons) and some people with Ataxia may have more jerky movements when trying to hit keys to type for example they may miss, take a few attempts to grab something or drop things frequently.

It also takes more energy & concentration to do things so person gets tired much quicker, as they are having to concentrate to do things that used to be automatic, like walking, this would be similar to person without ataxia learning to walk on a tightrope and trying to keep their balance and concentration everytime they had to walk from A to B.

This means on a daily basis simple things like getting yourself out of bed and getting dressed can take longer. A person may have good ‘gross motor control’ like to self propel a manual chair, put arms in a jumper or legs in trousers but may struggle with buttons, zips, laces which take fine motor co-ordination.

They may have strength in legs and arms to pull themselves to standing but struggle with actually co-ordinating their legs to walk and keep their balance whilst walking.

Going up and down steps is particuarly difficult as it requires keeping your balance on one leg whilst moving the other, then switching your balance to the other leg that has just moved up or down one step before moving your other leg.

Some people walk better with rollators as arms stay in one position and only have to concentrate on what leg are doing. Crutches require co-ordinating both arms and legs and keeping balance whilst you shift from one to the other. Some people may find it easier to just swing on crutches so both arms move together then both legs as it requires less co-ordination. you need good upper body strength and core body strength for this.

Your ‘core muscles’ are the ones in the middle of your body around waist/abdomen/lower back area. It is important to keep these strong to be able to sit without support. You need these to sit yourself up in bed, transfer independantly, sit in a regular chair or car seat, sit in a wheelchair without falling out when it moves, get yourself off the floor if you do fall.

Some people may have better sitting balance than standing balance, and be able to sit on regular chairs or sporty light weight wheelchairs, others may need full support seating to be able to sit upright in a wheelchair. Some types of Ataxia can also cause very bad vertigo and dizzyness so it is almost constant everytime the body moves.

There are many different types of Ataxia – some are hereditary and several family members have it, some start in childhood and a child can be in wheelchair before they have left primary school. Others can start as late as a persons’ 60’s. They all have different rates of progression.

Some types of Ataxia can be caused by other conditions and events such as head injury, stroke or the cause may be complex and uncertain. This is known as ‘idiopathic ataxia’ (cause unknown). These types are less likely to gradually progress to point that person loses all walking ability, fine motor co-ordination and speech, but can often start with a much faster progression until the cause has been determined and treated. The Ataxia may or may not be reversible depending on how long it took for doctors to work out what was causing it and whether the cause is something that can be easily treated or a result of long term damage. An example of this could be if you were taking medication for another condition such as Epilepsy for many years, Ataxia can be a side effect of many of these types of drugs.

Cerebellar Ataxia can also affect hearing, sight, speech and swallowing. Some types can also affect the autonomic system (things we don’t have to think about working like blood pressure, heart rate, immune system etc).

There is no known cure, but some exercise programs that focus on vestibular exercises (for balance, co-ordination) are successful for many people with Ataxia if started in the early stages and done regularly it can slow progression.

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7 thoughts on “What is Ataxia?

  1. Hi
    I am glad you shared this desription of ataxia as I didnt realise that it could cause vertigo/dizzyness, I always wondered if my son was experiencing this although not diagnosed with Ataxia it is one of the symptoms of his condition.
    Thanks

  2. hi Kati, This article is very informative, some of which I didn’t know about, and I have had ataxia for 16 years. Mine was diagnoised with idiopathic ataxia. This is the most informative article I have ever seen. Thanks for writing it.

  3. I wanted to say thank you for this very informative article. I am 44 and I have ataxia. I have recntly gotten very involved in working out and trying to improve my muscle strength. Keeping as light and strong as we can is SUPER important. If I can advise anyone in anyway let me help. My motto is “no flag no fail” Steve

  4. Hi and thanks. Had a brain illness recently. Left me with ataxia, dont know too much about it. Hospital that diagnosed this and other conditions were excellent. (Wasnt in such a good place before this, unfortunately). May ask for referral to Sheffield. Re. the tightrope analogy, you took the thoughts right out of my head. Everything worse when outside. Looking forward to reading your blog. There arent many of us! It helps that youve shared! But look after yourself.

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