Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.

As part of the Ataxia Aware project we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.

It is only on reflection that I can acknowledge my problems with balance in childhood. In adulthood, I attributed it to my inturned right foot. However, it was only after surgery in 2002, to straighten my foot that I was referred to neurology and diagnosed with idiopathic cerebellar ataxia. My parents had my shoes wedged at about 5 years old but just the once. After that, I just coped as any child would without knowing I was any different. It is all down to speed, momentum and overdrive of the cerebellum! 

When I reached my late 50’s, I lost speed and kept falling over. Not due as I’d thought to my in-turned foot, but an atrophied cerebellum. This was described to me by the neurologist who diagnosed me as appearing drunk without the drink. He was 95% sure that I did not have MS. He also said that my shrunken cerebellum could have been due to my premature birth [I had told him I was born 6 weeks premature in 1942] but he couldn’t say for sure. My mother [pictured here with me and my late husband] fatally overdosed at the age of 57 [1973] years due to being bedridden with rheumatoid arthritis which could have masked ataxia. Since 2002, I have moved around several times and changed neurologists. I have had numerous tests and assessments but none have revealed which type I have so my diagnosis is idiopathic spinocerebellar ataxia.