Today is International Ataxia Awareness day 2019.
A day to raise awareness of a neurological condition that they think I have had my entire life.
A condition they generally think of as the love child between MS and Parkinsons.
A condition that is the reason I now drink from a bottle (mum witnessed this reason first hand the other day as I lost my balance, flung my arms out accidentally throwing my bottle into the air and over the back of the sofa before it landed on the floor. Can you imagine the mess if it had been an open glass?)
I remembered last night a cousin of a cousin spending an hour trying to teach me to catch when I was about 9 but that ability after an hour of trying to catch soon left me. At school I was incredibly uncoordinated dreading P.E unable to hit or catch a rounders ball, play tennis, struggle with hockey and completely and utterly unable to balance on the balance beam during gym.
However whilst ataxia is a daily struggle trying to stay upright and balanced and we don’t know what the future holds I carry on and am doing some things I never thought possible (Giraffe Manor, Alaska etc))
As my type of ataxia is so rare we don’t know how it will progress
Currently I slur my words, choke on nothing as well as food and drink, can’t balance or co-ordinate my walking or even attempt to skip, run etc.
One of my most frustrating symptoms is the ability to not “find” the word I want to say resulting in me saying “goodbye” when I mean “hello”, calling polar bears, snolar pears for a month or just getting really angry searching for the word in my mind.
I currently don’t have constant tremouring or shaking of my body, the inability to walk at all, dizziness or uncontrolled eye movements (although I used to).
So we don’t know what the future will hold but with my doggy by my side as well as friends and family I shall carry on for the time being.
How Rare? 