FA & I: Celebrating 25 years together
My diagnosis
My scoliosis
Muscle Spasm
Using a wheelchair
My powerchair
My Speech
NHS Wheelchair Services
Foot surgery
Using a catheter
My diabetes
As FA progresses
Living with depression
Ataxia UK Coventry and Warwickshire Support Group
Independent Living
Getting the care I need
Using a hoist
My Hive
Taking CoQ10
Using my computer
Using public transport
The Open University
Working life
Travels in the UK
Walt Disney World

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Last updated: October 2018

My disabilty: My scoliosis

When I was 9 it was found that I had Scoliosis which is a curvature of the spine. I had two curves which pushed my left hip and right shoulder blade out.

I was fitted with a back brace and was told to wear it all day, every day. The brace was a very heavy and rigid plastic full-length corset, held tight with straps at the back. It was like stuff nightmares are made of, and I can still remember how tight and smothering it felt. And so I avoided wearing it and over the three years it spent far more time in the cupboard collecting dust than fulfilling its purpose.

Maybe as a consequence my Scoliosis progressed quickly and it got to the point where the tops curve was pressing on my lung which was making breathing difficult. When I was 12 I had surgery to stabilise my condition. The surgery involved two different procedures, which took place two weeks apart. In the first procedure some of my rib bones were removed and used to replace the cartilage in my spine, making it solid

Originally, the second procedure was planned to happen a week after the first, but two days into my hospital stay I came down with German Measles and this slowed things down a bit as I needed extra time to recover from that. But two weeks later I was good to go and in the second procedure two metal rods (called Harrington rods) were fixed to both sides of my spine to hold it straight.

Throughout my time in hospital and in the weeks and months after leaving I did really struggle with the pain I was in. A family friend was a trained Bowen practitioner and this worked miracles in helping me to recover enough to start back to school, which I was away from for four months in the end.

All-in-all the surgery was successful and although it was four weeks of hospital and notveryniceness, it was something that had to be done as it would have been dangerous not to intervene. My Scoliosis has stayed stable since the surgery and I'm a lot straighter than I once was (I gained two inches in height).

If I had my time again I'd learn to put up with the brace because I don't think, if I had stuck with it, my Scoliosis would have progressed as much as it did. The curves in my spine, and the unevenness of my hips and shoulder blades, are still noticeable.

The rods themselves cause no problems, although they do greatly restrict movement in my trunk and I cannot bend or twist my back. As the years have gone on and as the muscles around my trunk have got weaker I've found I have a tendency to lean to the side which causes a lot of discomfort in my rib cage. I find exercise to be really helpful in maintaing trunk balance. I also find massage really useful to keep pain/stiffness in my back, shoulders and neck at bay.

The surgery lead to me using a wheelchair more than I had up until then...


This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course.