Ataxia Awareness Day – Living with Ataxia post via Social Media

Ataxia Awareness Day – Living with Ataxia

Ataxia Awareness Day

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Ataxia South Wales Wristbands

September 25th 2013 is Ataxia Awareness Day. Ataxia is a rare condition that many people haven’t even heard of and our main connection with the condition is due to one of our most loyal Trabasaxons Alan Thomas living with cerebellar ataxia. We’re always pleased to see Alan on his worldwide adventures and always getting great use out of his Trabasack.

What is Ataxia?

Ataxia is a coverall name given to a group of different neurological disorders which have a profound effect upon balance, coordination and speech. There are many different types of ataxia that effect people in different ways.

Some of the many types of ataxia include:

  • Friedreich’s Ataxia – thought to be the most common type of hereditary ataxia and usually first noticed between the ages of 8 and 15.
  • Ataxia-telangiectasia – AT is a much rarer form of hereditary ataxia which effects 1 in 100,000.
  • Spinocerebellar Ataxias – SCAs are a group of hereditary ataxias which again affect about 1 in 100,000 people. SCA symptoms don’t usually make themselves known until adulthood.
  • Episodic Ataxia – as the name suggests episodic ataxia is another hereditary form of the condition which comes in phases but much of the time the person has no symptoms. Symptoms usually begin in the teenage years and can be a reflexive response to stress, exercise or alcohol amongst other triggers.
  • Idiopathic late onset cerebellar ataxia – ILOCA usually occurs after 50 years of age and degenerates over time.

Ataxia can affect anybody at any age but as the above examples show different types of the condition are more likely to be diagnosed at certain points in an individual’s life.

There are believed to be approximately 10,000 adults in the UK living with a type of ataxia and research suggests several thousand children too.

Currently there is no known cure for ataxia although some forms can be treated effectively. Research is continually being carried out and funded by Ataxia UK who are dedicated to finding a cure as this video shows:

What causes Ataxia?

Ataxia is a condition in its own right but it can also be a symptom of other conditions including multiple sclerosis and can also occur due to a head trauma or intoxication. Ataxia which isn’t caused by any of these factors is likely to be a hereditary condition caused by a faulty gene passed through the family or in some instances non-hereditary or sporadic.

Research has also shown that Friedreich’s ataxia is caused by a defect in the gene which produces the protein fraxatin. Understanding this gene helps move research forward towards ambitions of a cure.

Ataxia UK’s research projects are focused on finding out exactly what causes different ataxias and pinpointing the individual genes responsible for these conditions. At present approximately 28 genes have been discovered which cause spinocerebellar ataxia and research continues to ascertain how these genes are effective and make steps towards finding treatment and eventually the cures needed.

Trabasaxon Alan Thomas

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Alan and the Trabasack Team

Now we’re back to Alan’s story. Alan has been a huge supporter of our business for many years and we’re really grateful for all the action shots he takes with his Trabasack and we love seeing where he takes it next.

Alan had always walked with a trademark ‘wobble’ and spoken with a small slur but this was just part of who he was. He found a career as an electrician but it was making sandwiches which showed him something wasn’t quite right. Coordination was becoming extremely difficult and after numerous visits to GPs trying to convince them something was definitely wrong, by 34 Alan had his diagnosis of cerebellar ataxia.

Rather than resting on his laurels Alan realised there was very little information about ataxia available and endeavoured to change this. He wanted to make a difference so people living with ataxia could easily access and obtain information about the condition and eventually became a Trustee of Ataxia UK and the Chairman of Ataxia South Wales.

Much of Alan’s work is online supporting other people worldwide with Ataxia and moderating Living with Ataxia an online community

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Alan making great use of his Trabasack

for the conditions. He also attends as many national conferences as is feasible and is dedicated to spreading the world about ataxia.

Alan made this video about Keeping Positive with ataxia and the user comments afterwards show what a positive impact his work has. As on commenter says:

“Alan has shown me that my three year old daughter Jade has a lot to look forward to and achieve in her life to come. Jade has Ataxia and by the time I met Alan, I was full of despair for my daughter. Not anymore. Alan – you are truly an inspiration to me and many others like my daughter. You have shown me that Jade has a wonderful life in front of her and I can never thank you enough for that.”

Gadgets for Ataxia

Alan has already highlighted how useful his Trabasack has been for many purposes from carrying drinks and food to taking notes but there are other gadgets which can be hugely beneficial for people living with Ataxia including:

Greepers Laces – removing the need to struggle with the coordination needed to tie them up

UnPlugz – to make removing plugs from sockets simple and safe

HandSteady – a drinking cup with a rotatable handle, making it easier to keep steady than traditional cups

Signature Name Stamps – if you find it hard to write a consistent signature try this idea

Spread the Word – Ataxia Awareness Day

Ataxia Awareness Day is 25th September every year and it’s an opportunity to spread the word about a little known condition which many thousands of people live with. The more awareness there is for the condition the less people will feel isolated and more can be done to research and develop treatments.

All photos in this post are courtesy of Alan Thomas’ fantastic Flickr account.

full item http://livingwithdisability.info/ataxia-awareness-day/

This is great. Alan, whomever you are, you are an inspiration to even "mild" but mopey ataxia-sufferers like me, and must have had wonderful parents who "made" you well. Kol Hakavod which means in Hebrew: all the honor to you!

Cant say thank you enough Alan, your the guy that keeps me going. Hope you enjoyed London Neta

Thanks Punk, I marched around here and there ; lovely town.. It helped mightily to have a driver waiting at Heathrow. I would have never managed the train with a suitcase, especially since I hear the train is downstairs. There might be an elevator around, but go find it! Also, I may have broken a few ankles getting 2 my seat (in the sky) at the National threatre where we saw Edward II. We went to the British Museum and to the National Portrait Gallery. Very nice. We spent the weekend with friends who are British and have a lovely home in North London. I told our hostess--who wanted to take me to some heath ( park)-- that I was too tired to budge and said nothing about ataxia. I climbed up their stairs repeatedly (ugh); and did not offer to help or kiss anyone goodbye. The price you pay for masking the ataxia!!!!. They probably though I was/am a bit, maybe more, daft--to use British. We did learn some other Britishisms like "loo" for bathroom; "Jumper" for sweater, "trousers" for slacks etc.

Punk said:

Cant say he athank you enough Alan, your the guy that keeps me going. Hope you enjoyed London Neta

Great Alan, honestly, I'm in awe. xB

You, Alan, are truly an inspiration to all with ataxia! I know you are to me! My best to you today and always! ;o)

The day started with radio interview

and then Ataxia South Wales Day out in Cardiff Bay, WOW fantastic support

pics at http://www.livingwithataxia.org/photo/albums/international-ataxia-awareness-day

Thanks. Great info!