Focus on Yourself:
Ataxia, Fitness and Positivity
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.
What were your earliest experiences of Ataxia, and how did you get your diagnosis?
I first noticed something wasn’t quite right when I was a senior in high school. I had a harder time keeping up in gym class, especially with sports that required balance and coordination. I didn’t know what was going on.
When I was around 20, my parents took me to get an MRI to figure out what might be causing it. That’s when I was diagnosed with cerebral ataxia. Getting that answer helped explain a lot of what I had been experiencing.
In my early 20s, I was actually doing better than I am now. I could go out with friends, walk fairly well, and didn’t need any assistive devices. But around 25, I started noticing my balance and walking getting worse. That’s when I began using a walker to help me get around safely.
Is there anything that has shocked you about having ataxia?
One thing that’s really surprised me is how slowly Cerebral Ataxia progresses. It’s not always obvious, but over time, you start to notice changes, especially with balance and walking.
Ataxia & Me is a UK-based charity. We tend to find that levels of support differ depending on where Ataxia patients live; those in bigger cities may receive more support than those living in the countryside. What is your experience of living on Long Island, New York?
That’s definitely something I’ve noticed where I live, too. There really isn’t a lot of support specifically for people with Ataxia. I don’t know many people in my area who have it, so it can feel pretty isolating at times. Compared to bigger cities, it seems like there are fewer resources, support groups, or specialists nearby. It’s something I wish were more available, because having that kind of local support would make a big difference.
On your social media, you post lots of fitness videos. How does fitness help you, and what advice would you give to someone who has Ataxia who is looking to get into fitness but doesn’t know where to start?
Fitness has been really important for me. I started taking it more seriously after I found out I had Ataxia, because my doctors told me it could help with my strength and mobility. It’s made a big difference. I’ve built more muscle and strength over time, and that’s helped me feel more stable. Even when I do fall, thankfully, I usually don’t get hurt, and I think a lot of that comes from staying strong and active.
For anyone with Ataxia who wants to get into fitness, my advice would be to start simple; things like resistance bands are a great place to begin.
And importantly, don’t worry about how other people might see you. Focus on yourself and your progress. Everyone starts somewhere, and what matters is that you’re trying and doing what’s best for you.
Your online presence is really positive and inspiring. Ataxia patients can often suffer from depression and anxiety. What do you find helps keep your positivity up?
I think staying positive is something I had to work on; it doesn’t just happen automatically. I really try to focus on myself and not worry too much about how other people might look at me or what they think. That’s been a big part of it, just doing me and blocking out that outside noise.
I’m also really lucky to have a strong support system. My friends and family have been there for me the whole time, and that makes a huge difference. Surround yourself with people who support you.
What is one piece of advice you’d give to someone who has been recently diagnosed with Ataxia?
My advice is that success doesn’t come from hope alone; it comes from hard work.
Focus on improving yourself every day. Your desire to succeed has to be stronger than your fear of failure.
At the same time, accept what is. When you do that, you free up more positive energy to focus on what can be and what you’re working toward.
Interviewed by: Aneurin Read
Edited by: Meg Elmer
We would like to thank Lauren for sharing her 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.
If you would like to know more about Lauren, you can follow her Instagram @lauren_mcbrien, where you can see their fitness journey and more.