Cruel consequence of ataxia unawareness – Ataxia

Cruel consequence of ataxia unawareness

Cruel consequence of ataxia unawareness

Post Published: October 8, 2020

Val experienced an unfortunate motoring event as a result of her physical ataxia symptoms, which was caused by an ill-informed bystander.

In 2016 my 76-year-old grandma, Val, was diagnosed with late onset cerebellar ataxia, after three years of medical testing and physical decline.

As many people with ataxia will know, the area of the brain known as the cerebellum is responsible for the main motor functions such as walking and talking, as well as the finer skills such as writing and small specific movements. These physical impairments can be visibly noticeable and often draws the attention of members of the public. The limited awareness surrounding this condition regularly leads to the misconception of being drunk, or under the influence, due to the physical symptoms that are displayed, despite cognitively being fully aware.

This was an issue my grandma experienced, where her physical disabilities wrongly alerted the public to drink driving and created a situation that left her too humiliated to drive her car again.

Having moved to a retirement complex in 2017 to ensure her care needs were maintained, my grandma was still an avid driver as it allowed her to retain independence despite the continuous decline of her ataxia. At this stage of her condition, she did not use any walking aids, though she regularly stumbled as she moved around.

One morning, as she made her way to her car, which was parked on a public road, a man came out of his house and stood in front of my grandma’s car. He was incredibly intimidating and stated that he had called the police as he believed her to be drunk, refusing to let her get into the car or drive away. As a lone 77-year-old, this was very frightening, and despite trying to explain her medical condition to him, he remained volatile and accusatory. Soon after, the police arrived and questioned my grandma, who explained to them the physical symptoms she displayed; while the police were understanding of the situation, the man who had phoned them continued to accuse her of being drunk, which was incredibly upsetting for my grandma.

Following this experience, the humiliation my grandma felt was so huge that she gave up her driving license; scared that the situation may happen again, and she would have to experience such a distressing ordeal once more. This had a drastic impact on her, and stripped her of the independence she relied on to care for herself and my Grandad.

I am sharing this story with Ataxia UK in the hope that this will raise awareness of the condition to avoid this happening to anyone else, as this is a challenging condition to deal with without distressing accusations being made by uninformed members of the public.

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