Alan Thomas from Wales is a fixture in the Ataxia community. Read more about his journey below.
‘Ataxia’ means ‘lack of order’. People with ataxia have problems with movement, balance, and speech. It is a “Degenerative” (in my case, it is a very slow degeneration) there is currently no cure for this “Life-Limiting”, Neurological, condition.
From an early age, I have always walked with a wobble and sounded a bit slurred. Many people just thought “oh that’s just Alan! I achieved good qualifications at school and went on to run my own electrical contracting business. But the condition progressed very slowly, and lack of coordination along with electrical circuitry “does NOT mix”.
I managed to carry on, until, one day while making sandwiches for work and found buttering bread seemed to be taking more and more concentration. A simple task, you take for granted. It was then I thought about looking into this (which I thought to be a simple answer. How wrong was I?!)
I went to my GP, who on numerous occasions told me to take time off work and rest. This went on for many years. On one visit my GP was not available, so I saw a locum (who had recent knowledge of similar conditions/symptoms). He asked for more neurological tests and referred me to a general neurologist, where Cerebellar Ataxia was diagnosed. I was told the diagnosis, the probable outcome and there was nothing that could be done, and “that was that.”
I returned to my GP, who said that I had a rare condition and was unlikely to meet many others, with this rare disease. upon returning home I tried researching Ataxia, via the internet, but (at the time) found there wasn’t a large amount of consistent information available (along with some good and bad stories).
Since there was this lack of information, I was determined that information should be available to patients with all rare diseases plus a support network is vital, so the feeling of not being alone does NOT add to the patients’ worries.
I see a general neurologist in a local hospital, but their knowledge of Ataxia is very limited (and I find myself telling them about it!) But I must travel to Royal Hallamshire Hospital in Sheffield, UK to attend a specialist Ataxia clinic. This requires a journey of 257.84 mile(s), (nearly 5 hours, by train).
Although, over time, as DNA research has improved, this has been narrowed down to the Gene SPG7 being the cause of my Ataxia. So now I have a rare disease caused by a rare gene!
SPG7 is being researched in the same Hospital. I find this very satisfying to know that my condition is being monitored although I find that the excellent services provided at this clinic are very hard to find (or even not available) in Wales.
But at 54 years, of age, that’s 54 years of adapting – much of this adapting may be subtle changes that happen as the condition progresses (and may be at a subconscious level, and not even get noticed, by the patient) little things like I have always eaten meals only with my left hand, as I have never been able to coordinate both left and right hands. Also when lifting a cup, I always place my little finger under the bottom of the cup, to prevent the cup from slipping out of my hand. In hindsight, my brain was trying to “compensate” from a very young age.
The learning from all this is to know your limits, to pace yourself, and concentrate on tasks that you can do.
I have been able to progress the establishment of Ataxia and Me, a patient charity (based in Wales with a Global, following). Being a patient-led and patient-focused group, we can share the lived experience of living with this serious condition that you may not of heard of.
Ataxia and Me focuses on Ataxia, but also includes associated rare diseases and movement disorders. This wider remit has been welcomed by many pharmaceutical agencies. Indeed, we are well-known and interact with many.
I feel it important, that Ataxia awareness is conveyed, by the patient, so having the knowledge to convey the “Lived experience”.
Thanks for sharing your story, Alan!
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