Coping with My Ataxia

- by Pat Grant -

Swirling a partner around a dance-floor; going for a long walk along the seashore; standing up to honour someone joining or leaving my company - these are some of the things I can no longer do because I suffer from Ataxia. I have spent about half of the last decade and a half learning how to cope with this. This progressively debilitating condition is a minority disease, and my type only affects very few of those. I know it as "late onset, mild Cerebellar Ataxia".

As far as I am concerned, it was devastating: I found that I could no longer work full-time, nor could I hill-walk. Both of these were intrinsic aspects of my self-image.

Luckily I met the wonderful people from Ataxia Ireland (or FASI as it was known as then). They provided the support network and the expertise that I needed; and they also allowed me to re-build my self esteem.

In my arrogant, able-bodied days I had a stereotype of wheel-chair users; they were the people "in the background" who had carers that you talked to. The experience of the annual respite week of the Association in "Cuisle" changed that image. Some of these "afflicted-ones" drank whiskey through a straw, partied until dawn, and very kindly did not allow me to be condescending. Their joie-de-vivre and their positive attitude gradually changed my "woe-is-me" attitude, and now my family and friends comment favourably on my "never-say-die" attitude.

My voluntary work and my writing are still at a satisfactory level, and using wheel-chairs has meant that even forests can be explored. As for Disability Concessions ... my daughter and I recently attended some wonderful concerts in the wheel-chair-friendly Cologne Philharmonic building - at a substantially reduced cost.

I hope to get my old-age State pension in March, and this will be just another milestone. Also, the examples of those who have a more advanced form of this condition repeatedly challenge me; some of these brave people go all over the world. Now I have cousins in Australia whom I want to see again (and to get to know their children and their grand-children). Now that my house has been adapted (with the badly needed help of the State) to allow me to continue living alone, this trip has become my "savings goal". To prepare for that: well I have never been to the Liffey Valley Shopping Center, and many other "Far flung lands mythological" beckon.

Excitement has come back to my life.

 

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