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 www.livingwithataxia.org , 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 another film: http://vimeo.com/3281185
Ataxia South Wales