|My disabilty: Using a wheelchair
A few years after being diagnosed with FA I started using a wheelchair first for distances (I remember using it on school trips and my friends pushing me to and from school in it) and then when I made the transition to high school I used the chair to take me from lesson to lesson as I worried (or rather my parents worried) that I wouldn't be accepted in high school if I walked around in the way that I did back then. Although I resented them at the time for pushing the use of a wheelchair around school I know now it was a good move.
If you look up ataxia in a dictionary it will define it as "loss of the ability to coordinate muscular movement" or similar. One way to induce ataxia is to drink too much and after a few too many you will find that you begin to walk much like I did.
After my Scoliosis surgery I used my chair at all times outside the house. The surgery involved four weeks of bedrest in hospital and after that time I had to learn to walk again. I was very weak and lost a lot of weight. I also lost a lot of ability which I never regained - the co-ordination in my legs took a steep dive.
Inside the house I still wobbled and staggered from A to B, using walls and furniture to steady myself. I was a bit like a human pinball at this stage as I would bounce from wall to wall until I got where I wanted to go. I couldn't walk in an open space as I needed something to hold onto. I guess because my sense of balance was so poor I needed something to hold onto to give me that sense of balance that I didn't have myself.
Over the next few years I was falling more and more often. Most afternoons I'd come home from school, plonk myself on the sofa, and ask everyone else to bring things to me as I needed them. It wasn't that I was lazy, it was just so much easier that way then walking there and getting it myself.
I lost out on so much when I should of been enjoying being a teenager but I was so afraid of using a wheelchair all of the time and I just didn't want to let go. Wheelchairs are strange things; to somebody who isn't a wheelchair user they represent something terrible - a horrible accident or a debilitating disorder. To someone who needs one a wheelchair removes barriers and promotes ability and independence. I just had to move from one mindset to the other.
I began using the wheelchair full-time when I was 14 and I didn't look back. I'm so much more able and independent with my wheels, and so much happier. But I was soon to find that even more independence could be found in using my powerchair.
When I first got my powerchair (I was about 14 at the time) I can remember thinking "only severely disabled people use powerchairs". That wasn't something that I wanted to be so I didn't really use it until I started college - I didn't really want to depend on friends to push me in my manual chair when I got tired or came to a ramp that was too steep etc.,
As well as gaining a lot of independence from using a powerchair it was amazing how much more energy I had in college compared to when I was at school and pushed myself great distances in my manual wheelchair.
The powerchair that saw me through college and the first few working years of my life was a big, clumsy and quite basic powerchair which didn't have much battery power. The powerchiar itself was actually quite limiting as it couldn't be taken in small spaces or long distances.
When I was 21 I got a mid-wheel drive powerchair (a Jazzy 1121) which was great as it turned on a dime and the battery lasted forever. With it I was able to go on buses and trains and go out for the day. As you can see from the picture on the right I even took it on holiday to Walt Disney World and I was able to enjoy it so much more because of the freedom I had.
Now I use an Invicare TDX2 powerchair and in this chair I can elevate the legs, rise, tilt, recline. See the my powerchair page for more info.
|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.