When I was 8 I was diagnosed with genetic neurological condtion called Friedreichs ataxia after becoming increasingly unsteady on my feet from the ages of 4 or 5. In someone with FA nerve cells become damaged, meaning the messages they carry get mixed up. Their movements are thus unsteady and uncoordinated. Quite often an unsteady walk is the first symtom - frequent falls from tripping over things and a struggle to just walk in a straight line. This is followed by unsteady hand movements and slow/slurred speech.

As time goes on walking becomes more unsteady and falls become more frequent, and they become increasingly dependent on a wheelchair until they are unable to walk at all. This is always a gradual process taking place over a number of years, although it varies so much between person to person - no two people who have FA are the same. I first used a wheelchair for distances and when I got tired when I was about 9 and by the time I was 14 I was using it all the time. Yet I know of people who were diagnosed in their 20s and who are still walking in their 40s.

When I moved into my own flat I started using a powerchair all the time. I feel so much more able, comfortable and safe in it. I also don't have the worry of transferring between my manual and powerchair. I use a Balder Finnese 280 which really helps me to stay independent around my flat.

Arms and hands become unsteady too but usually not as much nor as quickly. I used a loptop at school soon after diagnoses because my writing became too slow and laboured. At secondary school I would work with a note-taker in some subjects such as maths or science where things had to be layed out in a certain way or in graphs, tables or diagrams. Today I can't write at all but in the technological age we live in this is pretty non-consequental - I can bash at a keyboard quite well. Anything that involves careful, coordinated movements are difficult too - cutting food, button, shoe laces...

I wear lycra splints. They are available in lots of different shapes and sizes but the splints I have start at my wrist and go up to my bicep. They made of tight lycra they create tension as they pull tight and this takes away the loose, unsteady and surplus movements associated with ataxia, especially as they help control bending at the elbow. I've been told they don't work for everyone, but they do work really well for me - especially with making meals, doing stuff around the flat and typing. I seem to be able to drive my powerchair better when I have them on too. See http://www.hemihelp.org.uk/files/dynamic_lycra_splinting_09.pdf for more info.

I was about 17 when I noticed my speech becoming slow and slurred. This is a lot more pronounced these days, but apart from on the odd "off day" people don't have much difficulty understanding what I'm saying.

However speech is something I always really sruggled with, it wasn't so much the ataxia but controlling my breathing while speaking, especially in situations that make me nervous like when using the phone or meeting new people. I saw a speech therapist who gave me breathing exercises to do. The improvement I have seen has made a really big difference, knowing I can rely on my speech a lot more has really boosted my confidence. I still have good days and bad days, but on the whole my speech is more powerful and even than it has been in years.

There are some "bonus conditions" that a lot of people with FA get. The most common are scoliosis (a curvature of the spine), cardiomyopathy (a heart condition) and diabetes. I have been spared of diabetes but I was diagnosed with the other two soon after being diagnosd with FA. I was diagnosed with very mild cardiomyopathy at the same time as I was diagnosed as FA. Fortunately it hasn't progressed since then and remains very mild; I don't experience any symptoms or take any medication. Throughout the years I have known many people with FA lose their lives to cardiomyopathy - I think I've been very lucky on this score.

I take a suppliment called CoQ10 and a high dose of vitamin E. I started taking these whilst doing a drugs trial many years ago. Straight away I noticed an improvement in m speech, swallowing and tiredness. I have carried on taking the same dose of CoQ10 (600mg every day), which I buy from the US it is expensive in the UK, and the same dose of vitamin E (2,000 IU) which I managed to get on prescrption after nagging my GP for a few months. There have been times when I've stopped taking CoQ10 because I've forgotten or couldn't afford to buy a new batch. Every time a worsening in my speech, swallowing and fatigue follows. I get a real sense that CoQ10 and vitamin E are keeping those two very signficant symptoms at bay. It's also supposed to be excellent for the heart and I can't help but wonder if my healthy heart has something to do with taking it.

I was diagnosed with scoliosis a year later. When I was 12 I had two surgeries to stop it progressing. In the first some of my rib bones were taken out and grafted into my spine to make it solid which corrected the curve that was there. In the second two metal rods were wired to either side of my spine to stop the curve progressing. I've had no major problems since. My back gets a bit stiff and achey sometimes and I have massage and accupuncture to help this. I also stay very active and I really think this helps to prevent problems.

Going to the gym I go to the Wellness Gym at Coventry Sports Centre. I work with an instructor who is trained to work with disabled clients and he really knows what he's doing. I go three times every week; during sessions my instructor helps me use ankle weights in different ways and gym balls which I push against with my legs (in different positions depending on which muscle group we want to work on) - and my upper body by using the machines and dumbells, although my instructor has to 'guide' my movements as otherwise I would clonk myself on the head! All sessions I do from my wheelchair. Using my bike I bought my a MOTOmed Viva 2 Lower Body from a company called Medimotion (http:/www.medimotion.co.uk/). I first used one at my local physio department and was so impressed I decided to buy one myself. It is passive so it does the movement itself but you can actively pedal yourself at any time too. I still have some power in my legs because of going to the gym but I haven't done anything near as active with my legs as this for years. Even in passive mode I can feel it working my muscles in my calves and thighs and afterwards I get a sort of pins-and-needles feeling because it's getting the blood flowing.

The only prescribed medication I take is called Baclofen and I take this for muscle spasm. I also have botox injections to control the muscle spasm in my feet. As you can see by looking at the before and after shots below, the difference is amazing. I Before botox my feet were in constant spasm which was very uncomfortable and I used to suffer really badly with broken skin/pressure sores from where my feet used to rub on my shoes. In October 2010 I had my first set of botox injections into muscles in my calves to relax the muscles that were overpowing the weaker ones, thus causing spasm. The actual injections have to be done every 3-6 months and splints need to be worn for a few hours every day to stretch your feet and maintain a natural position. Being able to stand in my powerchair, which I do daily, is also a really great way to stretch and therefore mantain the benefits of botox.

There's an important point I've tried to get across here: there is something you can do for almost every symptom. The person with FA influences how it progresses - it's not simply something that'll get worse whatever. But the person has to be proactive - I really believe that you reap what you sow.

So what will happen as FA progresses?

This is a really difficult question to answer. Everyone with FA is different - different age of onsets, different rates of progression and very different symtoms. If you or someone you know has FA, their symptoms may be very different to mine. A person's attitude and temprement also inflences how it progresses. So all I can be is vague...

I've met hundreds of people who have FA over the years. Lots in their 40s, some in their 50s and a couple in their 60s. I've known quite a few people in their 20s die from cardiomyopathy. Some people I've met have lost their sight/hearing/speech to FA, lots haven't. Some people are dependent on walkers, wheelchairs or powerchairs and they become dependent on these things at different ages. Eveyone who has FA will eventually lose their ability to walk. Some have have enough coordination in their hands to use iPads and iPhones whereas some haven't. I've met some who drive while others like me are unable to. Some marry and have kids whilst some don't. Some live alone and others travel the world whilst others are unable to. FA is just one big game of who knows?