I would just like to write briefly about my life with Friedreich Ataxia.

I feel it may be of some value to other sufferers.

I was born on the Southern tip of Tasmania, not quite the South Pole but pretty close! Cold, very cold! We had 300 acres of fruit orchards and a huge veggie patch.

I was diagnosed when I was 10 and my sister also (passed two decades ago already) at the end of 1957.

Walking was my first problem. Living in the country walking was something you had to do. My older sister was very adventurous & when my grandparents moved to the Gold Coast in the late ‘60s we all ended up moving there. Without going into detail I married at 19. My disease progressed and by the time I was 22 I was in a wheelchair. I moved to Brisbane where I founded the first Australian New Zealand Association for sufferers of FA. Now there are groups all over Australia. I moved back to the Gold Coast but there was no demand for another group and after seventeen years the Brisbane group folded.

I am now a grandmother and my eldest will be 20 next month intending to be a heart surgeon.

I am about to turn 65 but I cannot do much for myself. My eyesight & my hearing are very poor & my speech is very awkward, I am flat out trying to understand myself. Lol!

My body is very much incapacitated. My brain is very active but my frustration is killing me. I use to play the piano but now my hands are so twisted I can’t even stretch myself. I would like to know the thoughts of other sufferers & how they look forward to making a future with FA.

I have written my autobiography, who knows when I will finish it. Maybe others would like to share some of their life.