|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 manner 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 foster 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, didn't I? I knew that I was back then really, 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 labeled. 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 reaping a much greater level of independence from using a powerchair, it's 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 the US and I was able to enjoy it so much more because of the freedom I had - in my powerchair I was able to go where I wanted whereas before I've always been limited to wherever the person pushing me wanted to go.
Now I use an even niftier front-wheel drive Balder F290 powerchair (pictured at the top of this page) In this chair I can rise, tilt, recline and stand. Since getting it I've enjoyed more freedom than I've ever had. That's kind of ironic, isn't it? I'm more disabled than ever and yet here is me saying that. It goes to show what the right piece of kit can do for you I suppose. See the my powerchair page for more info.
There are other things to FA too...:
|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.|