My Life with Friedreich's Ataxia.

I find my life now to be a constant battle between making things as easy as possible for me and keeping as active and independent as I can. I hope that by doing this I can slow down the progress of the disease. On retiring from work in 2003 and thus being at home far more, my care increased. Surrey Heath Social Services supported me in my wish to remain living independently by providing increased funding (along with the Independent Living Fund).

This funding has become invaluable and I use it for employing PA's to help me do the things I can no longer do myself but need to do to continue living a healthy, worthwhile life. I also use it to employ PA's to take me on holiday and give me much needed physio and kinetic therapy. Needing PA's to help me with many mundane daily tasks does not stop me continually trying to do some myself (I'm not one for quitting and believe that "If you dont use it, you lose it"). Over the years some of the devices and additions I have made to my home and lifestyle to make things easier for me are:

 

I stand for 30 minutes per day in a standing frame. I have been doing this since 1996 when it was recommended by a physio. It has many benefits including improving blood circulation and stretching muscles (those unused when sitting).
I have an electronically adjustable bed. Bought from ebedz.co.uk in November 2008. It is a Furmanac Mibed Classic Coolmax Chloe. The memory foam mattress is softer than on my previous bed and has less of a rigid edge. It is therefore more difficult for me to turn at night so I had a rail put on the wall (below picture) to hold on to while I turn. I have noticed improved sleeping patterns already and the electronic adjusting back eases my back pain in the mornings as well as making it far simpler to get out of bed. The cat serves no useful purpose!
 
I Take 200 mg of Co-Q10, 600 mg of Vitamin E and one small multi vitamin tablet each day. I also take extra vitamin C during the winter.
I use a powerchair when out (my second powerchair; provided by the wheelchair services) and use the monkey pole to help me transfer to it.
 
This remote on/off socket enables me to switch any electrical device on/off with the touch of a button (below)
A netbag secured behind my letterbox prevents me having to pick letters up from the floor.
 
Buttons used to control above.
Lowered surfaces in kitchen, space under sink and food preparation area (on right) and easily reachable 'helping hand' (above side opening oven)
 
Monkey Pole to aid transfer to sofa
Monkey Pole to aid transfer to bed (also note the non-slip mat)
Window winders to enable easy opening of kitchen windows. All windows in my bungalow have these fitted. They are 100% secure.
 
Monkey Pole to aid transfer to toilet, non-slip mat and grab-rail on inside of door to close door from inside bathroom).
Rails to aid transfer to fixed shower chair, wire holder to keep all toiletries to hand, non-slip mat and covered wooden block to prevent my feet slipping on wet floor when transferring back to wheelchair after shower (bottom left).
 
An adjustable mirror and an electric toothbrush sit on a sink with space below it in my bathroom.
I use this kettle tipper to hold the kettle steady as I pour boiling water into the cups.

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 website.

   
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.
 
On 31st January 2012 I took delivery of this Voltswagon Caddy supplied by Sirus Automotive in the West Midlands. This is my 7th Motability vehicle and my 2nd 'internal transfer WAV'. I drive this vehicle by transfering from my power wheelchair to the drivers seat while inside the vehicle. The drivers seat is a normal car seat situated on a Ricon 6-way automatic turning mechanism. This means I can take my power wheelchair around with me wherever I drive to.
My first WAV was a Renault Kangoo. By clicking here you can see this vehicle and read all about the conversion made to it. The Caddy I have now is converted in exactly the same way.

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 to the right) 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.