My Life with Friedreich's Ataxia.
I was diagnosed with Friedreich's Ataxia in January 1993 after 7 years of believing I had a totally different condition called Charcot Marie-tooth disease. Friedreich's Ataxia is a rare and progressively deteriorating disease of the central nervous system (that's what is says in all the medical books!) It usually begins to appear in otherwise healthy children between the ages of 5 & 17. I first began to notice having problems with my balance when I was about 14. From then up to the age of 22 I chose to use no walking aid, preferring instead to stumble about on my feet. At 22 I decided to begin using crutches to help me walk and by the time I was 25 I was using a wheelchair full time. 

For more information about Friedreich's Ataxia visit the Official Ataxia UK Website. Ataxia UK is always looking for ways to raise money to support people like me and to fund research into the disease. You can donate online using this Ataxia UK site or alternatively pay me online by clicking the FastPay logo at the bottom of my homepage and I will forward your donation on to them. I live independently in my own bungalow that has been adapted for a wheelchair user: It has lowered work surfaces in the kitchen with a shallow sink. It has a shower with a stool so I can transfer to it from my chair and a lowered sink in the bathroom too. I also now have 4 floor to ceiling poles , one to help me transfer safely to the toilet, one to the sofa, one to my bed and the other to my powerchair in my bedroom.

   
On 3rd September 2007 I had Laser Surgery on my eyes to cure my short sightedness once and for all. My ataxia had made dealing with contact lenses very difficult and after wearing them for 20 years (though not the same pair!!) returning to wearing glasses was never an option. People with ataxia often develop a nystagmus (invuluntary eye movement) which I was told could make the laser unable to track my eyes.
However, when I went under the laser, the surgeon told me that the laser could track the movement and so the treatment went ahead. The day after treatment my vision was perfect and I now have better than 20/20 vision. I am delighted with the results. My surgery was performed at Optical Express Laser Clinic in Reading. If you have ataxia and want laser surgery then I would recommend you go and see them. You may also want to visit www.lasik-eyes.co.uk.

In October 1998 one of my best friends Melanie Preston died. Please read my tribute to her.

I got this car on 3rd November 2006 through Motability. This Kangoo is my 6th Motability car and is the first that I have been able to use with my powerchair. I will have it for 5 years as unlike my other 5 Motability cars, I have it on a 5 year lease and not a 3 year one. It varies from a standard car in the following ways:
1. Hand controls: This is a push/pull lever situated just behind the steering wheel which is conected directly to the ordinary feet controls. This enables me to use the accelerator pedal by pulling the lever towards me and the brake pedal by pushing the lever away from me. I have been using hand controls since 1995 when the co-ordination in my legs made it dangerous for me to continue driving using my feet. This is the 5th car I have had hand controls fitted to. The push/pull lever also has an indicator toggle and a beam toggle fitted to it to enable me to signal and shine the beam without taking my hand off it.
2. Automatic tailgate and ramp: This enables me to enter the vehicle in my powerchair and thus take my powerchair around with me. I have a remote control which has 4 buttons on it: Tailgate open, Ramp out, ramp in and Tailgate close. I use buttons 1 & 2 when approaching the car to enter it and buttons 3 & 4 leaving the car after having exited. When inside the car I can use a futher 2 toggle switches that perform the same 4 tasks. These toggle switches are located close to where I park my chair.
3. Wheelchair locking device: This enables me to automatically lock my powerchair to the floor of the car. I can do this by simply positioning the chair in the correct place. The car was totally adapted by a company called Aspect Conversions. They took my powerchair for a few days shortly before I took delivery of the car. This was so that they could attach a bolt to the bottom of the chair that fits perfectly inside the lock on the floor of my car. The chair is thus locked securely in the car and meets all health and safety requirements. I can also be driven whilst sat in my powerchair in this position (provided I am wearing a seat belt which I do anyway). The device is unlocked by pressing another button close to where the chair is parked.

4. 3-way movement automatic drivers seat: This enables me to transfer myself from my powerchair (in its lock) to the drivers seat and then to the driving position behind the steering wheel. The 3 movements of the seat are: back and forwards (as can be adjusted manually in normal cars), up and down & swivel.

I would like to publicly thank both Aspect Conversions for their technical knowhow and Motability for funding their work. The car has given me total freedom and independance which would not have been possible without their input.

If you are reading this, have a driving licence and use a powerchair for mobility and are thinking (in the words of Catherine Tate) 'I can do that' then do contact Motability and tell them you need a Renault Kangoo Assist. But be prepared: If you thought ordering a car through Motability was easy - look at this.

There is no direct treatment for Friedreich's Ataxia and no cure. Research is always ongoing though and more and more drugs are becoming available that can help sufferers deal with some of the symptoms caused by the disease. However, I am no doctor and my medical knowledge is extremely limited. So all I can do is raise money to enable the professionals to do their job. On many occasions I have sat outside Sainsbury's with a collecting tin and I have raised money in other ways too....

In August 1995 I raised £1,000 by doing a tandem parachute jump. I jumped from a plane at 11,000 feet above an airfield at a place called Windrush. It seemed like a good idea at the time but as you can see from looking at the picture below (left) as the time before leaping out the plane drew towards the last couple of seconds -
I wondered whether it was all worth it. After a few more seconds  I felt even worse but when the parachute eventually opened (see sequence above) it was a wonderful feeling looking down at the fields and seeing the river Avon winding its way into the distance.

 

Am I bovvered? ..... yes!!
For my 25th birthday (20th September 1993) I raised £1,500 by having this tattoo engraved on my left arm.