Ataxia

Loss of co-ordination from damage to the cerebellum. Frequently mistaken, in public, for drunkenness.

What it is

Ataxia means loss of co-ordination. It comes from damage to the cerebellum, the part of the brain that fine-tunes movement, or to the pathways connecting it.

There are many causes: inherited conditions such as Friedreich's ataxia, stroke, multiple sclerosis, brain injury, tumours, and long-term alcohol use.

Around 10,000 adults and 500 children in the UK have a progressive ataxia. The number with ataxia from other causes is far larger.

The daily indignity worth naming: an unsteady walk and slurred speech look like drunkenness to strangers, and people with ataxia are challenged, refused service and stared at routinely.

Signs you might notice

Unsteady, wide-based walking. Difficulty with balance and frequent falls.

Slurred or scanning speech, with uneven rhythm.

Clumsy hands: difficulty with buttons, writing, pouring, eating.

Eye movement problems, and difficulty tracking.

Swallowing difficulty, which is dysphagia, in more advanced cases.

Fatigue, because co-ordinating movement consciously is expensive.

How it can affect day-to-day life

Being assumed drunk is the complaint people with ataxia raise most often, and it changes whether they go out.

Fatigue and falls together shrink activity. Then deconditioning makes balance worse.

Speech difficulty causes people to be treated as cognitively impaired when they are not, exactly as in cerebral palsy.

Supporting someone well

Presume competence and give time. Slurred speech is not slow thinking.

Physiotherapy focused on balance and core strength, sustained rather than a single course.

Occupational therapy for adapted cutlery, weighted items and grab rails.

Speech and language therapy for both speech and swallowing, early rather than at crisis.

Consider a card explaining the condition. Many people with ataxia carry one, because explaining to a stranger while unsteady and slurring is not realistic.

Reduce falls risk actively, and get the environment right.

Fiducia Talk gives a reliable route when speech is unclear, especially on the phone or with unfamiliar people, and it costs nothing to start using.

Where to get help

Ask for a neurologist referral, and for genetic testing where there is a family history.

Ataxia UK run a helpline on 0800 995 6037 and fund specialist ataxia centres.

New sudden ataxia is a stroke until proved otherwise. Call 999.