International ATAXIA awareness day is here

International Ataxia Awareness Day (IAAD) is on September 25th of each year. It is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease.

ATAXIA -WHAT’S THAT?

Not many people have heard of the disease that afflicts only 10,000 in the UK. It is a rare condition and one that has prevented me enjoying the hobby of metal detecting. International Ataxia Awareness Day (IAAD) is on September 25th of each year. It is a co-ordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. I carry a card with me that clearly explains the symptoms. You may have seen it before.

MY CARD

Young John is a Traffic Cop. When I asked him his reaction to inviting a seemingly drunken man to ‘step out of the car, what his reaction would be. In essence he said that he wouldn’t jump to conclusions for the guy might have Ataxia, just like his Dad. Good one, son!

I have been diagnosed with hereditary ataxia . . . where symptoms develop slowly over many years and are caused by faulty genes that a person inherits from their parents. So that’s why Johnny (my father) was so clumsy. Or is it idiopathic late-onset cerebellar ataxia – where the brain is progressively damaged over time for reasons that are unclear. In medical speak the word IDIOPATHIC used by doctors and specialists simply means, ‘we do not know what has caused this! In fact ANY disease that is of uncertain or of unknown origin may be termed ‘idiopathic’.

For more see HERE

So, that’s it. I also have cancer, but that’s a another story. If you’d like to know more about the disease ATAXIA, check it out HERE. In the meantime, thank for reading this far. Believe me when I say that I try hard NOT to be a miserable old git! See you next time.

A post from last year . . . Introducing Fred – the Shaky Chef

 

4 thoughts on “International ATAXIA awareness day is here”

  1. Hello John.. I have dealt with people with ataxia when I was a technologist in the hospital..I have seen first hand how difficult it can be for people with the disease..

    I am impressed the way that you have managed it.. My thoughts are never far from you .

    Blessings to you my friend

    Micheal

  2. John you have my full sympathy and I admire your determination to lead a normal as possible life.
    I also know how demanding the effects of your serious health problems can be especially when looking after Lynda who is also suffering serious health problems.
    I am now finding that most of my time is deployed in looking after my seriously ill wife who was diagnosed with a similar health complaint as Ataxia she has “Cerebral Vascular Brain Disease” and also Parkinsons Disease which results in her appearing to be drunk and rolling about.
    Due to me having to spend most of my precious time caring for my sick wife that is why I “Sit On The Fence On A Particular Forum” and endure sly remarks about none posting, I wonder how they would feel if the shoe was on the other foot.

Would you like to leave a response?

This site uses Akismet to reduce spam. Learn how your comment data is processed.