Through each milestone of this disability - from walking all the time, to having to use a wheelchair some of the time, to not being able to walk at all, using a powerchair and everything in between - I've learned again and again that life goes on.  I've thought that when each of the above happens then life will end, like when I can't walk anymore that will be it, but - low end behold - it wasn't.  Life always goes on...

As this disability has progressed it's the transsition from one stage to another which i've found most most difficult - for example going from walking to becoming a wheelchair user, a wheelchair user to a powerchair user, employed to unemployed, or completely independent to someone who uses care.  Ahead of each of these transitions I've found the next stage terrifying.  It always amazed me how I much emotional and physical energy is wasted on resisting the next stage, because in the end i've always seen how much my life has improved post transition - my holidays are better since using care, my time is better spent now I'm unemployed and I can achieve so much more with my life thanks to my powerchair.

What I don't really talk about is the fact that FA is progressive - I know it will get worse.  I have met a few people in the advanced stages of this disability and it isn't pretty.  What can I say?  I don't really think about this aspect of my disability too deeply, but I do think about it most days in one context or another.  I use it to remind me to milk this life for all it's worth while I'm able.  I actually think that everyone should endeavour to do this, FA or not, because nothing in this life is guaranteed.

One of the biggest influences my disability has had has been gained by seeing my disability progress and learning to live with the knowledge that it will get worse. That is, ataxia isn’t terminal or anything like that, but I will see myself become more and more disabled and gradually I’ll lose the capacity to enjoy life like I do now.  In my case, how I do it is to set myself short-term goals to ensure I’m getting the most out of the here and now. My future can’t be relied on, but I know what I have to play with now – and play I do! In the back of my mind I also know that when I can’t do whatever any more, I will be very happy to look back and know that I made the most of it when I had it – this is very important to me. I subsequently feel very pressurised to make the most of here and now. In a way I feel very fortunate that my disability pressurises me in this way – I don’t think it’s a bad pressure to have!

As everyone who has FA is different (it's very much a designer disability - everyone has their own version of it), no one can predict which symptoms I'll develop or at what rate things will progress.  I therefore can't really speak for my future because I don't know what it has in store for me.  I don't feel I should make plans for it, but I do keep an open mind.  I know people who have FA who have travelled the world or who have kids or who have university degrees.