Cerebellar Ataxia
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
Alan Thomas, founder and chairman of Ataxia & Me, shares his journey with Ataxia, offering both challenges and insights on how to navigate this rare disease. Alan also shares the story of how Ataxia & Me came to be!
How Did You Get Your Diagnosis?
I didn’t know anything about Ataxia until I got diagnosed when I was 30.
I always slurred my speech and was wobbly when I was in school, but everyone thought that was just me. There wasn’t much information about Ataxia 50 years ago.
After I’d left school, I found day-to-day activities harder to achieve, like trying to spread butter with a knife onto bread. This made me feel uncomfortable, as this was a normal thing to do. I went to the doctor, and he told me that I was just tired and needed some time off.
Things didn’t get better, so I went back but was told something similar. This went on for a period of 9 years. I kept going back, and every time, I was never satisfied with what they told me.
I noticed odd things happening to me- millisecond delays in my movements. I mentioned this to the doctor, but still nothing happened. After 9 years, I was used to this.
Eventually, another doctor, after looking at my records, said that he thought it could be Ataxia and referred me for more tests. I saw a consultant who came down from London, who said, ‘It was obvious what you’ve got, why didn’t they pick it up before?’
I then found other patients who were in a similar position. I did my own research and told other people about things I’d learnt. Someone suggested that I take this further and set up my own official charity to spread awareness, like I was already doing in my personal life.
The charity developed from here. Giving advice from patient to patient seems to work! Because it is such a rare condition and getting answers from doctors is so hard, patients talking to patients and sharing their own insight is really important.
I always knew something was wrong with me, but Ataxia progresses so slowly, so I adapted to it. When I go to the GP now, they ask me, ‘How are you?’ I think, well, how should I be? Because you learn to live with it and develop alongside it.
Ataxia is often a symptom of other things, but it is also a condition on its own, which can make it hard to diagnose.
What's Been the Most Challenging Part of Having Ataxia?
The frustration of not being able to do things or at a pace I was used to.
For example, I used to be able to mow the lawn, but then it became too hard, so I bought a self-propelled mower, but now this has got too much.
Knowing what you can and can’t do is difficult.
Because it is a slow-progressing disease, you adapt and overcome. I find I mask the small symptoms and adapt until I can’t do it anymore.
I’ve noticed the distance I can go is getting less and less. I have to think, I might be able to get there, but will I be able to get back? You have to think ahead.
Navigating the GP for Other Health Related Issues
I’ve also learnt that the GP will put any illness I have down to Ataxia, and I’ve had to advocate for myself that sometimes it’s not this and something else.
I find that because GP appointment times are now so short, I find myself repeating my story over and over, even though it’s not the problem I want to talk about.
Sometimes I find it helpful to go to a GP who doesn’t know a lot about Ataxia for other health concerns. So that they will look at other things first.
Has Anything Shocked You in Your Charity Work?
The number of patients who can identify with me. I’m able to share that I couldn’t butter bread, and they say, ‘That was me!’
With people who have been misdiagnosed, I’m able to have conversations with them and suggest that they bring up Ataxia to their doctor, just in case their GP hasn’t considered this previously.
Ataxia- A Rare Disease
Often, Ataxia is bundled up with rare diseases, which can make it hard to really understand the true numbers of how many people are living with this condition.
I use this as a strength. It is a rare condition, and I have it! I find people are more likely to listen when they know it’s rare. I use its rarity to my advantage when trying to spread awareness. I find it best not to compare Ataxia to other diseases but focus on it as a separate disease, in its own right.
What’s Been Your Proudest Moment?
Winning a few awards for patient engagement, even just being nominated, is great!
Having people acknowledge my work as a patient-led charity, sharing the real story.
I feel that we’ve really done something as a small charity 🙂
What Would Be Your Message For Someone Newly Diagnosed with Ataxia?
Be positive. Be determined. And go out there and create more awareness.
What Would You Like People Who Aren’t Diagnosed with Ataxia to Know?
The symptoms of Ataxia are slurred speech and wobbly movement, which is why we often get labelled drunk.
But don’t assume that person is drunk; if it’s not the weekend, it’s not the rule of thumb!
Interview by: Aneurin Read
Edited by: Meg Elmer
We would like to thank Alan for sharing his inspirational story with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.