A recent community event in Dublin highlighted the barriers for those living with brain conditions to participate in sport.
“The human brain is probably the most complex structure in the universe – after the universe.”
So says Prof Norman Delanty, as he introduces the topic of neurology at an event in Dublin last weekend. The community event called My Moving Brain was organised by FutureNeuro, the Research Ireland Centre for Translational Brain Science, to bring together people living with brain conditions and their families, caregivers, coaches, teachers, advocacy groups and researchers to talk about brain health and wellness, and the value of sport and physical activity in that equation.
Delanty, who is a clinical neurologist at Beaumont Hospital, a professor at the RCSI University of Medicine and Health Sciences and a funded investigator at FutureNeuro, explains that neurology is the branch of medicine that deals with conditions of the nervous system, including the brain, brain stem, spinal cord, peripheral nerves and muscle.
About 860,000 people in Ireland live with a neurological condition, nearly one in every six people. This includes conditions such as multiple sclerosis (MS), epilepsy, dementia, concussion, migraine, Parkinson’s disease and peripheral nerve disorders.
Delanty says the aim of the event is not to talk about living with disease but to talk about living well. And by living well, he means understanding and appreciating not just the medical needs of people living with brain conditions but also their physical, mental and emotional needs.
This holistic view is lacking in the health system currently, Delanty says, where the focus is on treating a presenting condition rather than on overall wellness. He gives the example of untreated high blood pressure, which is common because sufferers often don’t show symptoms, but increases the risk of vascular dementia.
Delanty cites a recent meta-analysis of 58 studies which shows that physical activity can help protect against dementia and urges everybody to get active, every day if possible.
A more holistic view of health, Delanty says, is not only for those living with brain conditions but for everybody, with a general rule being if it’s good for the body, it’s good for the brain.
Raising awareness
Former Paralympian Dr Michael McKillop hosted Saturday afternoon’s event in the picturesque surroundings of Blackrock College. McKillop, who has won four Gold medals for Ireland in athletics, lives with epilepsy and cerebral palsy. “We’re here to learn, we’re here to listen, we’re here to be better,” McKillop says.
McKillop was nervous about hosting – it was his first time – but he pushed himself because “it’s a cause that’s incredibly close to my heart”, he says.
“As someone living with epilepsy, I’ve experienced first-hand the challenges of managing this condition while competing at an elite level in athletics.
“My journey has not been easy, but it’s taught me so much about resilience, determination and the power of raising awareness.”
For McKillop, epilepsy is not just a medical diagnosis, it’s part of who he is. “It’s crucial to break the stigma surrounding neurological conditions and show that they don’t have to limit a person’s potential.”
Breaking barriers to sport
For people living with brain conditions, there are huge barriers to achieving their potential in sport and exercise.
Emma Beamish, a former Ireland international cricketer, wants to break down those barriers for people. “It’s crappy enough having to live with the condition without making life difficult when it doesn’t have to be,” she says.
“You don’t want your life to be about your epilepsy, but when barriers are put up, you are hastily reminded that you have this condition that you never asked for.”
Beamish, who for the last three decades has played “a multitude of sports where no one understood what I was going through”, talks about her experience of playing at an elite level while managing her epilepsy.
“In sport, we all have the same finish line. But it has taken me a long time to accept that we run different races to get there,” she says.
Despite her many successes, Beamish still faces challenges in accessing the support she needs to participate in sports. To manage her epilepsy, she needs a fairly strict regime of sleep and tells of a recent incident where a weekly training session was moved to a much later time in the evening and the coach was unmoved by her explanation as to why this was difficult for her. She was undeterred by this indifference, however, and fought for the necessary accommodations. But she expresses disappointment that she had to fight in the first place. “It has not always been easy playing sport when you are surrounded by those who think you are making excuses or asking for special treatment.”
Beamish had her first seizure at 14 and was diagnosed with tonic-clonic seizures, an intense form of the condition which causes extreme muscle spasms that may temporarily arrest breathing. She describes some dark times in the early days when she had no one to relate to. “When I was growing up with the condition, people did not really talk openly about it. I knew of no one in my position.”
For Beamish, sport helped her “put manners” on her epilepsy. She loves sport and it helps give her life structure. “Sport gives me focus and purpose. It makes me strong when my condition can make me feel weak. It strengthens my body and mind.”
Feeling the fear
It’s not just the external barriers that people living with brain conditions face when it comes to participating in sport and exercise, there is also the fear that these activities could be dangerous. During the event, a recurring question was how to reassure people, particularly the parents of children with brain conditions, that it is OK to get involved in sport. Dr Lyndsey Butterworth, the education and public and patient engagement lead at FutureNeuro, is one of the main brains behind the event and said its aim is to facilitate these kinds of open conversations about concerns people may have in order to increase awareness and inclusion in sport.
Delanty says that sport and physical activity are generally to be encouraged, but he advises people not to overdo it, to make sure to rest, sleep and get good nutrition. Though he warns that there are cases when people may need to avoid direct contact sports where there is an increased risk of head injuries. The important thing is that decisions should be “individualised and sensible”, he says.
Claire Behan, a registered advanced nurse practitioner for epilepsy and a researcher at FutureNeuro, advises people with brain conditions and their families to be open and honest with their medical teams about what their priorities are. “From a clinical point of view, it’s really important to let us get to know you,” she says. This way, the medics can help you find the right balance to safely achieve what you want.
Fighting for the future
Behan says that more data is needed to help policymakers provide the right supports to people with brain conditions to enable greater participation in sports. She sees potential for future research at FutureNeuro to help with these questions.
Fiona McLoone, the FutureNeuro communications lead, says the aim of events such as My Moving Brain is to make brain research “accessible and engaging for everyone”.
“We design our education and public engagement activities to get people talking, to share their ideas and opinions with us and each other,” McLoone says.
Beamish, alongside a busy work and sporting schedule, works with FutureNeuro on their Public and Patient Involvement Panel, whose members help ensure that patients inform the centre’s research direction and activities. She is happy to be involved with the centre’s research. “Improving our understanding allows us to make smarter choices and realise that our condition is not as insurmountable as we first thought,” she says.
“The more we talk, the more we share experiences, the more solutions we will find.”
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