Ataxia Awareness Advocate - Story about our own moderator of LWA : Alan Thomas

Alan Thomas

Ataxia Awareness Advocate

I have Cerrebelar Ataxia a life limiting invisible condition that has made me give up my job as an electrician and rely on the care of my girlfriend.

As I had always walked with a “wobble” and talked with a small “Slur” everyone (including me) just thought it was the way I was. Only when I was working, as an electrician, and as I was making sandwiches every day, I was noticing that spreading butter was beginning to be something of a “Task” for my co-ordination, something that became a worry and something that I would need to seek medical advice.

Finding a diagnosis was NOT going to be easy, or quick. One of my first visits to the GP, I was told that there was nothing wrong and to go home and rest. To this day, the GP who said that will not look me in the eye.

Plenty of GP visits (over numerous years), referrals to Neurologists, MRI scans, Lumbar Puncture and blood tests and finally reached diagnosis of ATAXIA. Then the GP told me he wasn’t sure how it would be, but be prepared to be a wheelchair user, in the future.

So I went home and started to search, the internet for information (some good and some not so good). After me finding that information on this “invisible” “life-limiting” Neurological condition, was not very informative, I decided to make sure that information and support for citizens with Ataxia is easier to obtain, and so it enabled me to become Trustee of Ataxia UK (the national Ataxia Charity) chairman of Ataxia South Wales.

A branch that covers a HUGE area, encompassing 6 health boards and 16 local authorities. We are based in the West of Wales, on the county boarder of Carmarthenshire and Pembrokeshire, which is very rural and this alone brings its own challenges. We have recently set up a support group in Cardiff to cater for the East Wales membership.

Having Ataxia is very frustrating , not being able to carry out the daily tasks, that you used to do, getting used to watching others do “your work” and relying on others, constantly, for your care and wellbeing.

I spend alot of time using the computer communicate to others on disability or Neurological issues, this is made possible with many online facilities-Ataxia South Wales Facebook page and “online” network , an international rare disease community which I moderate (this is just one of my online inputs, as there are so many, I keep an active mind and as mobile as possible to make life as normal as can be.

Ataxia South Wales is proud to be “spreading the word” about this “invisible” disability, on a local, national and international level with its attendance at many conferences including the Ataxia UK annual conference and the National Ataxia Foundation conferences in the US.

Many of my recent activities, have been made alot easier with the use of my TRABASACK, it is excellent to use as table for meals, taking notes, at meetings and even carrying drinks and food from buffets. A very PRACTICAL and useful addition for a wheelchair user and their independence.

Here’s a digital story I’ve made (via BBC Capture Wales) as a broadcast on TV for International Ataxia Awareness Day (25th September)

Here’s another film:

Ataxia South Wales

Link @

Alan Thomas is the man!

Very interesting story Alan...,thanks for sharing! What type of ataxia do you have (just curious), if you know? Is your "type" hereditary or not? Also, thanks for the links... ;o)


Welll done Alan.You have done a lot for the community.

thanks Alan. your story is similar to mine. we're not alone in this world, we've got each other!


Thanks Allan for sharing your story. Could the TRABASACK be used for a rolling walker?

Morning Alan
Hope your well today?
Just need you to know how much much we all appreciate your hard work
making sure information is available to us daily

Your story is so like mine x

Wow, Alan! Powerful story. Thanks for sharing. I was wondering--Has there ever been a study on whether certain areas of the world have more problems with ataxia ? It seems to me that the UK is so advanced in studying ataxia, and has clinics for ataxia. Here in the US it's difficult to get a diagnosis. Our doctors don't seem to be up on ataxia. Is it because we don't have as high of a percentage of people with ataxia as in the UK? Ahbee

I am tempted to tease you about this appreciation of all your work Alan but joking aside, I totally agree with everyone here.

I love all the pictures of your travels and truly admire the way you make the most of your life whilst going that extra mile to help others.

Take care, Patsy x