What is Ataxia?

By Kiara Lynch

Ataxia is the name given to a group of neurological disorders that affect balance, coordination, and speech and includes diseases such as multiple sclerosis and stroke as well as hereditary ataxias. There are many different types (both inherited and acquired) that can impact on people in different ways and to varying degrees. Around 250people in Ireland have some form of ataxia, some of which are treatable, but in all cases there is still no cure.

Ataxia Ireland are funding a wide range of research projects to try to find treatments (and ultimately a cure) that could help people with these disorders. Kiara Lynch, who tells her story below, was diagnosed with Friedreich’s Ataxia at the age of 14, after a healthy, able-bodied childhood.

When I fell down a flight of stairs at school for the first time, I knew my world was changing. I was fourteen years old and had had noticeable problems with my balance since I was twelve. These problems included falling off my bike for no obvious reason, twisting my ankles or knees while playing sports, and running in crooked lines, to name but a few. However, during the six months between being 13 and 14, the difficulties with my balance became even worse. I could no longer walk across an open area unaided and when walking down a corridor I needed to cling to the walls for support. I knew there was something seriously wrong, but I refused to think about it and tried to rationalize these issues by giving myself excuses like, ‘I had a bad ear infection a few weeks ago; my system hasn’t recovered yet, that’s why I’m losing my balance’.

When I was 14, my parents told me that I had a degenerative neurological disorder called Friedreich’s Ataxia. They told me that my balance would continue to deteriorate and I would eventually need to use a wheelchair full-time. My coordination, hand-writing and even my ability to grip a mug or glass would also get worse and my speech would become slower and more slurred. Nobody told me at that stage that those were only the symptoms I could expect in the next ten years.

I turned 30 earlier this year and, as well as dealing with the above deteriorations for 16 years and using my manual wheelchair full-time since I was 17, other symptoms have developed along the way such as selective hearing, posture problems, being at high risk of developing diabetes and cardiac issues. I am not going to say that my life has been easy because it hasn’t; it has been extremely difficult at times, but what the experts say is true: you do adapt, you do learn to live your life with your disability. It is the everyday routine things that most people take for granted that I find the most difficult – getting in and out of bed, getting dressed, going to the toilet, brushing my teeth, making a cup of tea, drinking a cup of tea, eating dinner, showering – I need help with it all and even then it takes a lot of time. Then there are the two hours of physiotherapy exercises and stretches I have to do every day or else I will spend all day and night in pain and discomfort as my muscles spasm and contract.

There are the never-ending GP, consultants, orthotic, physiotherapy, and occupational therapist appointments to fill those spare hours that might otherwise be spent reading or listening to music. Just in case I am not exhausted by the end of the day, my daily fatigue will kick in making my speech almost incoherent and making me feel so tired that breathing is an effort. Managing life with a long term disability is like having a badly paid full-time job!

Please do not mistake any of the above for self-pity. I just want people to know what Ataxia is and what people who are living with it go through on a daily basis. I am very lucky and I know it. I have a wonderfully supportive family and friends and I went on to college and a got a full-time job. I also got married in 2012 and we have a great life together.

If you would like more information on Ataxia, or would like to make a donation to Ataxia Ireland, please visit www.ataxia.ie.

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