The other stuff - other symptoms

FA affects the coordination of the arms and hands. I am therefore unable to write, except a little and very slowly.  However thanks to the technological age we live in, this is pretty non-consequential!  That said, all  manual tasks such as typing, turning the pages in books, squeezing toothpaste onto my toothbrush, unzipping my bag takes time, incredible patience and much concerntration!

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 or else I do really have to concerntrate.  Although this isn't really a problem; it just slows me down a bit sometimes.  I am subsequently a slow reader, but I have always enjoyed reading books.  As well as this I find handling books quite frustrating and I end up fighting with pages trying to turn them.  I love listening to audiobooks on my iPod, which I download using iTunes.

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. 

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.  

I have always struggled with fatigue - I have always done things part-time (school, college, work).  Fatigue is an indirect symtom and a lot of people who have FA find they tire easily or need more sleep etc.  You see normally bodies do things without any conscious prompting, but I have to put so much extra effort, focus and concerntration in to doing everything - from squeezing toothpaste onto my toothbrush to joining in a conversation, reading a book, using the computer, to working out in the gym - that it all adds up.

I take medication called Baclofen which is a muscle relaxant to control muscle spasms.  

However just before Christmas last year I came down with the flu and have had to since increase the dose I'm taking three times over as it's left me extremely tight and with a lot  of muscle spsm.  It's triggered a lot of deterioration and where as before flu I could do things like dress and transfer independently, now I can't - it's really knocked me for six.  I'm kicking myself for not making time to go and get a flu jab last year as it's now two months later and I'm still struggling to kick it.  It's going to take a lot of time and effort to build myself back up.  So if you have ataxia, heed the warning and go and get jabbed!

To slow down the progression of FA and win back some control, there are a few things I that help...