It is hard to think back to a time when I was first noticing that something was wrong. I always knew that I had poor balance. My eldest brother had poor co-ordination so I always assumed that I took after him. I was an active teenager playing soccer, football in the winter and indoor soccer all year round but not improving in those sports wasn’t enough to convince me that something was wrong.
When I was 19 I started studying a double diploma of outdoor recreation and tourism. It was a 2 year course through TAFE and I fell in love with the course on the first day. I wanted nothing more than to become a outdoor professional and have a career in the outdoors. This is when I really knew something was wrong. After a year of rock climbing, bush walking and kayaking my balance was getting worse, not better. I didn’t tell anyone about my concerns at first. I saw my GP and told him about my balance. He referred me to a neurologist. The neurologist thought I was okay until she asked me to walk heel to toe. I was able to do it but I was very shaky and unstable. She decided that I needed to spend a week in hospital so she could run tests and figure out what this thing was. By this time I had started my 2nd year at TAFE and we were doing more intense training. I had told my parents by this stage and they were surprised as they had not noticed a change in my balance at all. After a week in hospital and a whole number of different tests they sent me away and told me to come back in a month for a diagnosis. I came back a month later and they told me I had FA. At the time it was particularly hard to deal with as I had 6 months left of study for a career I would no longer have the physical strength to do. Now looking back at my diagnosis I am lucky that it took such a short time to discover I had FA. I have only met a few people with FA and I have heard some peoples diagnosis’s have taken up to a year or over. I can only imagine the anguish they must have felt waiting that long.
This brings me to the creation of Walking for Ataxia. I am part of the lucky few who still have mobility and don’t need to use a wheelchair. It has been estimated I will need to use a wheelchair when I hit 40 or there abouts. I feel that I have an obligation to start and finish this walk while I still have the physical ability.