I have pushed myself to the limits in many ways over the years, both at work and in my own time. I’ve worked in IT across universities with titles behind my name, and designed the electronic cars of the future; I’ve travelled and rock-climbed around the world with seven languages under my belt; for a long time, I thought that life couldn’t get any better.
But in September 1999, everything took a turn. One day at work, I suddenly blanked out. Nine days later, I woke up confused and in hospital with a neurologist standing at the end of my bed. He was talking slowly to me, but I kept drifting in and out. Seven weeks on I was told for the first time that I have ataxia. My neurologist explained the condition, but was unable to say what had caused it; I had an SCA type which he hadn’t tested for because it was so rare.
As the months went by I began to fall a lot, picking up many broken wrists and elbows and dislocations. By 2003 I was in a wheelchair for my own safety. By 2008 my vision was virtually gone; I was struggling with swallowing and speech, and choking on purified food. It was then I heard a talk on ataxia by Professor Marios Hadjivassiliou from the specialist ataxia clinic at Sheffield, and I asked my GP for a referral. Within weeks I had an updated scan and blood tests. I was put at ease with the manner of Professor M. Hadjivassiliou, and after a good examination I was diagnosed with Fredrick disease with spinal problems, and uncontrolled movements of arms and hands.
When people ask ‘why?’ I say ‘why not?’
Now, I have a customised navigation wheelchair and glasses to support my vision. Even though my movement is limited, I have an excellent team around to help with my ataxia. I can’t turn back the clock, so I am looking forward: this July, I will attempt to sail around the UK solo-handed with the help of satellite navigation. I have had a yacht built with built-in electronics to keep me on course from A to B and to help alter sails, masts etc. I will start in Dover and sail across the channel towards France with a continued turn, going around non-stop. Then, in August, I will sail around the British Isles. By this time, my new phase-2 boat will be ready for my first Atlantic crossing in 2018. My main aim is to sail around the world in 2019. I want to break every record that there is to be broken, and help publicise ataxia.
Training and coaching has gone well for me so far; the pain I have at times can become too much, but my mind blocks a lot out when I have to concentrate. This way, I will be able to say that “I defied it, I did it, and I did not let ataxia stand in my way.” That is how it has made me a stronger-minded person.
When people ask ‘why?’ I say ‘why not?’ I have to make every day count and enjoy every minute by following my dream. I had the choice: do I sit and do nothing, allowing myself to become stale? My aim in life is to set myself a challenge that would take me beyond my capabilities. It doesn’t matter if you have never done something before, so long as you think it through in stages and try your best, anything is possible. Life is too short, and this is the beginning for me.
