Up until I was 16 I hadn't wanted to meet anyone else who has FA.  I'm not sure why this was really - a fear of the unknown maybe? 

When I was 14 I got internet access at home.  I found out about INTERNAF which is a mailing list for people who have ataxia and I started joining in.  From there I made friends and we stayed in touch using chat rooms, instant messaging programs and e-mail.  This was the first contact I had ever had with another person who has ataxia.

In the following few years I talked to all sorts of people on the internet.  I started to get my head around the fact that everyone with this is different; different symptoms and rates of progression, attitudes and mindsets.  I think, before anyone meets somebody else with ataxia, they have to make the same realisation.  You do meet others who are way worse than you and you need to be able to handle that.  Everyone with this is different - you can't predict your own future by looking at anyone else.

When I was 16 I organised a meet with three friends who I'd talked to on INTERNAF.  Two of them came to meet with me in Coventry from opposite ends of the UK, and the third from Louisiana in the US!  It's usually the personality that shines a lot brighter than the disability and we all had a great time.  It was a big step for me but also something I feel like I benefitted so much from.  Suddenly everything wasn't so scary - there are cool people out there who have ataxia, and I could be cool too!

Since then I've spent so much time with different people who are affected by this - I have made some really good friends.  And if you think all we do is sit around depressing and throwing pity parties then you couldn't be further from the truth.  The actual truth is that very often people who have ataxia have a greater zest for life that their able-bodied peers.  With these friends I have done so many different things over the years - wheelchair basketball, theatres, concerts, museums, and I even went on holiday with a group of them this year. 

People who have ataxia can be inspiring people, and just seeing how they do the practical stuff like living, driving, working can be such an eye-opener for someone who has recently been diagnosed.

And onto the bottom line...