A recent poll showed that only 10% of the UK population have heard of ataxia. On 25th September every year, we ask our Friends to get involved and help spread the word of ataxia, in a bid to up this statistic!

Stories from the community 

Ricky’s story

Hi, I’m Ricky, 38, married, British-born with Mauritian roots, and I’m living with Spinocerebellar Ataxia Type 2 (SCA2).

My journey with Ataxia is deeply personal. My mum had the same condition, and sadly, the disease took her life in 2021. At the time, I didn’t know I was affected too. Looking back, I realise the signs were already subtle changes in my movement, balance, and coordination, but I brushed them off.

Outside of my main job, I was an active musician. Playing guitar was a big part of my life. As far back as 2018, I noticed some parts I knew so well, like muscle memory, weren’t coming together anymore. My fingers didn’t move as they used to. Over the years, it became more noticeable, but I kept making excuses, telling myself I was just out of practice.

In 2021, I watched a video of myself and saw it clearly: the ataxic gait, the slight loss of dexterity. I knew instantly what it was, yet I put off seeing a doctor for a few more years.

In 2024, after a holiday abroad, my symptoms became more prominent. I spoke to my wife about the possibility I had inherited SCA2 from my mum’s side, and we agreed I’d see a doctor once we returned. That conversation was a turning point. Later that year, I received the diagnosis: SCA2. It was a moment of clarity but also of grief, as I often reflect on my old life, especially when seeing pictures or videos of concerts, gigs, and family outings.

Ataxia is progressive, so daily activities I once took for granted will eventually become more difficult. I’ve adapted how I travel, plan my day, and approach holidays or nights out, always considering accessibility.

Connecting with Ataxia UK has been invaluable, providing both information and community. I’ve shared my story more openly to help others feel less alone and encourage seeking support earlier. I’ve also made lifestyle changes, focusing on staying active, eating well, and maintaining mental strength.

Living with Ataxia is not just a physical challenge, it’s emotional. There are days of frustration and anxiety, but also days filled with hope that research will bring new treatments, awareness will grow, and stories like mine can build a stronger, more inclusive community.

On International Ataxia Awareness Day, I’m proud to stand with others affected by Ataxia. We may walk differently, but we’re moving forward together.

Differently Abled by Elizabeth Brown

I’m differently abled,

Not disabled.

Often, our world values a person

By his or her productivity.

When one becomes ‘disabled’,

So much changes!

“Where do you work?”

“What do you do?”

Becomes silence.

People are nice.

They reach out,

Want to help the ‘disabled’ one.

My body has changed

But not my mind.

“The spirit is willing

But the flesh is weak”

Has so much meaning now!

I tire easily,

But my brain is still going.

I have thoughts to share,

But forming words is hard.

So much has changed:

Singing is hard.

I no longer lector.

Beading and other art work

Take much more time.

Walking in and of itself

Has become exercise.

Biking with a ten-speed

Has become pedaling slowly

With a three-wheeler.

But I tread on.

Even though I tire easily.

I love to do.

So, here’s to me!

And to all those that support

And enable me –

   Thank you.

Lynn McNamee’s story

My Mum and I both have gluten ataxia and were diagnosed a few years apart. Gluten ataxia is an autoimmune disease caused by sensitivity to gluten. When people with gluten ataxia eat gluten, it causes the body to produce antibodies which then go on to damage the area of the brain which controls balance and walking-the cerebellum. In addition to issues with walking and balance, patients may also have slurred speech, loss of co-ordination etc. The only treatment for gluten ataxia is a diet completely free of gluten which may prevent symptoms from worsening and, in many cases, reverse some of the damage.

My Mum and I are both under the care of the Sheffield Ataxia Centre and are seen by Professor Marios Hadjivassiliou and specialist ataxia nurses and dieticians there. Professor Hadjivassiliou did a lot of initial research into gluten ataxia, and we feel very lucky to be under his care.

Patients with pre-existing gluten-related disorders such as coeliac disease have a higher likelihood of developing gluten ataxia, as do patients with a first-degree relative with the condition.

My Mum and I both walk with mobility aids, follow a strict gluten-free diet and have been supported by specialist neuro-physiotherapists to exercise appropriately.

Thank you,

Pat Spencer (Mum) and Lynn McNamee (daughter)

Sara’s art piece

“It’s my representation of how my head copes (or doesn’t) during attacks or episodes. It’s a work in progress – like the ataxia in my brain.

“I have been diagnosed with late onset progressive cerebellar ataxia after many years of testing.  It’s a medically interesting journey.  I’ve adapted and continue to do so regularly.”