In a recent episode of Disability Matters, John Comiskey spoke with Rob Thompson-Hunter, a new member of staff at Blanchardstown Centre for Independent Living (BCIL), about his experience of living with a rare neurological condition, the challenges of receiving a diagnosis, and the importance of finding a way forward when life changes unexpectedly.
Rob’s story is one of uncertainty, adjustment and resilience. Diagnosed with spinocerebellar ataxia in late 2023, he has had to adapt to changes in his balance, coordination, eyesight and energy levels. Along the way, he has also learned something important: staying positive does not mean pretending that everything is easy.
From Corporate Life to an Unexpected Diagnosis
Before his symptoms began, Rob worked in recruitment in a corporate environment. Looking back, he describes the experience of developing a disability as a clear “before and after” moment.
Around four and a half years ago, he began to experience persistent problems with his balance. He felt unsteady, struggled to walk in a straight line and experienced extreme tiredness without an obvious explanation. Initially, he put these symptoms down to stress and fatigue. However, when they began happening every day, he knew he could no longer ignore them.
After an MRI scan and referral to a neurologist, Rob began the process of investigating what was happening. His family history was complicated, and he had previously misunderstood how the condition could be inherited. Eventually, blood tests confirmed that he had spinocerebellar ataxia, a specific form of ataxia.
The diagnosis came at the end of 2023, following around eight months of investigations.
For Rob, the news brought anxiety and fear. He had seen how the condition had affected members of his family, including his mother, who had moved into a nursing home, and an uncle who had died young after developing a more severe type.
“I used to think that it could only be passed down from a male and that females couldn’t get it,” Rob explained, describing the misunderstandings he had carried about his family’s medical history.
The diagnosis was frightening not only because of what it meant for his own future, but also because of its impact on the people closest to him.
Living with a Rare Condition
Spinocerebellar ataxia affects coordination and balance, and different types can have different patterns and rates of progression. Rob explained that his particular condition is rare. He also highlighted how little people may know about conditions that they have never encountered before.
His symptoms include difficulties with balance and hand-eye coordination, changes to his eyesight, fatigue and periods of disorientation. He now uses a crutch when walking.
Some of these challenges are not immediately visible to other people. Rob acknowledged that it can be nice when someone says he looks well, but appearances do not tell the whole story.
“You don’t see the invisible stuff,” he said, referring to the fatigue, disorientation and eyesight difficulties that others may not notice.
This is an important reminder that disability is not always obvious. A person may look well while managing symptoms that affect their energy, mobility, concentration and everyday activities.
Rob receives support from healthcare professionals, including physiotherapy and speech and language therapy. He also attends the Ataxia Clinic at Tallaght Hospital and has worked with an occupational therapist to identify equipment that can make everyday tasks, such as opening bottles and jars, easier.
Although there is currently no cure for his condition, managing symptoms and remaining as active as possible are important parts of his approach.
The Emotional Impact on Family and Friends
A diagnosis of a long-term condition affects more than the person receiving it. Rob spoke openly about the emotional impact on his siblings and close friends, many of whom knew his family history and understood the significance of the diagnosis.
One of his first concerns was not about himself, but about how he would tell his family.
“How am I going to tell them? How can I do this to them?” he recalled thinking.
He also reflected on the experience of being on the other side of difficult news, knowing how upsetting it can be to hear that someone you care about has a serious condition.
As Rob explained, disability can affect the people around the person as well as the individual themselves. Families and friends may face their own uncertainty, worry and adjustment.
His experience highlights the importance of recognising the wider emotional impact of disability and making space for those feelings.
Two Things Can Be True at Once
Despite the fear that followed his diagnosis, Rob has worked to maintain a positive outlook. He believes that, after considering the options available to him, looking on the bright side has helped him navigate the uncertainty.
“I would sooner be happy,” he told John, reflecting on the reality of living with a long-term condition.
However, Rob is clear that positivity does not mean ignoring difficult emotions. There are good days and bad days, and sometimes maintaining a confident outlook takes real effort.
At a later appointment, he received some reassuring news: the condition had not progressed as quickly as he had feared. Having a clearer picture of its progression helped ease some of his anxiety and allowed him to feel that he had more time than he had imagined.
That experience has helped shape his perspective. He wants to make the best of a difficult situation, while recognising that uncertainty and worry do not simply disappear.
His message is particularly powerful:
“Two things can be true at once. So if you’re struggling, it doesn’t mean you’re not getting on with it. And if you’re getting on with it, it doesn’t mean you’re not struggling. You can do both.”
It is a reminder that resilience is not about being cheerful all the time. People can keep moving forward while also having difficult days, asking for help and acknowledging their fears.
Raising Awareness and Challenging Misunderstandings
Because ataxia is relatively rare, Rob has encountered situations where people do not understand his condition. As a younger person using a crutch, he has sometimes been asked questions about his mobility.
Initially, these interactions could be difficult. Over time, however, he has found a way to use them as opportunities to raise awareness. He carries a card from Ataxia Foundation Ireland that explains aspects of his condition, allowing him to share information when he feels comfortable doing so.
For Rob, this is a way of helping others understand that there can be many reasons why someone uses a mobility aid or experiences difficulties that are not immediately apparent.
He believes that a lack of awareness can be one of the biggest barriers faced by people with rare conditions. Open conversations can help challenge assumptions and make everyday interactions easier for everyone involved.
His approach has changed over time. Rather than always feeling the need to avoid questions, he can now choose to explain his condition and help another person understand a little more.
A New Chapter at BCIL
Rob has now begun a new chapter as a member of the BCIL team. His experience of living with a disability brings a personal perspective to the work of an organisation that supports independent living, choice and inclusion.
While the interview focused largely on Rob’s journey, it also offered an opportunity to hear directly from someone navigating the practical and emotional realities of disability.
His story illustrates why listening to people with lived experience matters. Disability is not one single experience, and the support people need can vary. Understanding those experiences can help build a more informed and inclusive community.
As Rob continues to adapt to life with ataxia, he hopes that sharing his story will encourage someone else to seek help or feel less alone.
At the end of the interview, John thanked Rob for being open about his experience and expressed the hope that it would inspire others to get help when they need it.
Keep the Conversation Going
Rob’s story is a reminder that life can change in unexpected ways, and that coping does not always mean having all the answers. It can mean finding support, learning about a condition, adapting to new circumstances and allowing yourself to experience difficult emotions without giving up.
As Rob put it, you can be struggling and still be getting on with life. Both can be true.
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
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