Home
 
FA & I: Celebrating 25 years together
 
My diagnosis
My scoliosis
Using a wheelchair
My powerchair
Foot surgery
Using a catheter
My diabetes
The other stuff
As FA progresses
 
Ataxia UK Coventry and Warwickshire Support Group
 
Independent Living
Getting the care I need
Using a hoist
My Hive
 
Exercise
 
Using my computer
 
Using public transport
 
The Open University
 
Working life
 
Travels in the UK
Europe
Walt Disney World


Please say hello, let me know that you've been here...
My guestbook
Last updated: July 2017

My disabilty: The other stuff
My arms and hands are very unsteady. I used a loptop at school soon after diagnoses because my writing became too slow and laboured. At secondary school I would work with a note-taker in some subjects such as maths or science where things had to be layed out in a certain way or in graphs, tables or diagrams. Today I can't write at all but in the technological age we live in this is pretty non-consequental - I can bash at a keyboard quite well. Anything that involves careful, coordinated movements are difficult too - cutting food, buttons, shoe laces...

I would say when I started college - when I was 16 or 17 - was when my speech first became affected, but even now, while it is certainly slower and more slurred than "normal", I don't have huge problems being understood. My speech only becomes very difficult to understand when I'm cold, tired or nervous. However speech is something I always really sruggled with, it wasn't so much the ataxia but controlling my breathing while speaking, especially in situations that make me nervous like when using the phone or meeting new people. I saw a speech therapist who gave me breathing exercises to do. The improvement I have seen has made a really big difference, knowing I can rely on my speech a lot more has really boosted my confidence. I still have good days and bad days, but on the whole my speech is more powerful and even than it has been in years.

Last year I started to suffer with depression. Following the recovery from my foot surgery and the problems I had leading up to my supapubic surgery I guess I reached my own personal limit - as lots of people do. Aside from that I have always suffered with anxiety and in situations that made me anxious my FA symptoms would be a lot worse - for example my speech on the phone would be a lot less clear because I was so anxious about not being understood. I started taking an antidepressant called Citanapram and it's made a big difference; not only do I not feel low and don't have to live with fear of slipping so low again but it's also addressed my anxiiety issues meaning that I'm far more relaxed and far less held back by some of my FA symptoms.

I have Nystagmus, which causes rapid and involuntary movements of the eyeball and just recently this has begun to affect my ability to focus, creating what I call flickery vision. Occasionally I'll be reading and my focus will skip back a few words etc. Although this isn't really a problem; it just slows me down a bit sometimes. My hearing is affected, but this is something you would never know unless you took me into a room where there is background noise (in class or in an office I can hear just fine). Because the nerves jumble things up, my ears mix up messages about what is foreground noise and what is background noise and I am left struggling to distinguish between the two. selectively

I have struggled with muscle spasm since I was a teenager. I have steadily increased the dose I take of a muscle relaxant called baclofen throughout the years and I experience a lot more muscle spasm when all I am very tired or I am ill. Like when I had flu about seven years ago – the spasm I experienced then was extreme and left me unable to use my legs at all for many months. I did exactly the one thing I shouldn’t of without knowing it – I rested my body completely. Experience has taught me that the best way to deal with muscle spasm is to exercise especially with movement lots of repetition so you learn how to voluntarily relax the muscle. Another great way to relax the muscles is with massage by taking up swimming.

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.