World Parkinson’s Day

Today marks World Parkinson’s Day – a day of awareness for a condition with which more than 10 million people are living, worldwide. The number of people living with Parkinson’s in England is estimated to be around 128,000 and, although there is currently no cure for the condition, physical activity and exercise has shown to improve many of the numerous symptoms associated with Parkinson’s.

A long-time advocate for the physical and mental benefits of running and exercise is Gary Shaughnessy CBE, Chair of Trustees for Parkinson’s UK, and Chair of England Athletics.

Gary was diagnosed with Parkinson’s in 2015, aged 48 – something he has in common with Frank O’Mara, who represented Ireland at three Olympic Games and won two world indoor titles over 3000m. Frank was also diagnosed at the age of 48, in 2009.

Frank recently published his memoir, ‘Bend Don’t Break’, which recounts his running career as well as the various stages of his life with Parkinson’s.

To mark World Parkinson’s Day, we brought Gary and Frank together for a discussion about the condition, their experiences, and the benefits of sport when facing up to a health battle.

“I was in complete denial…for about 10 years,” Frank says of the decade after receiving his Parkinson’s diagnosis.

It will be a feeling with which many who have received life-changing news can empathise. In the UK, it’s estimated that two people per hour are diagnosed with Parkinson’s, which equates to around 18,000 each year.

“I’ve seen so many people for whom the initial diagnosis has been brutal,” Gary says. “It’s basically been ‘you’re going to go downhill from here, you’ve got an incurable condition and there’s nothing you can do about it’. But I believe there’s a lot that people can do to manage the condition.”

Both Frank and Gary are in agreement with research which shows that one of the most effective ways of managing Parkinson’s – and its range of symptoms – is physical exercise.

Gary continues: “Exercise is the only thing that’s currently proven to make any difference in terms of the long-term prognosis of Parkinson’s. In my experience, exercise is as much about mental health and wellbeing as it is physical health and wellbeing.

“I feel better when I’ve been for a run or been to the gym, it helps to build connections with other people, it gives you targets to aspire to.”

While these advantages of physical activity aren’t specific to those living with a long-term health condition, Frank – who recommends the approach of shorter, regular activity, rather than aiming for longer runs – explains why they can be so important to those with Parkinson’s.

“A lot of the time, Parkinson’s patients tend to not have a lot of company, and are alone a lot. So I think the comradeship of working out – of all the classes you can attend – is hugely important; just having that connection with others.

“The other thing that can happen with Parkinson’s – and it’s happened with me – is that the voice tends to be damaged. Vocal chords are muscles too, so if you’re struggling, it’s good to work them out as well.

“So there are a lot of benefits to interaction, to sport, to going to the gym or classes. Anything that involves motion and friendship is good to me.”

Parkinson’s UK estimates that the number of people living with the condition in the UK in 2030 will be around 172,000. Despite these growing numbers, and increasing awareness of Parkinson’s in many quarters, both Frank and Gary highlighted areas that they hoped to improve and change in the coming years.

Frank explains: “I think the Parkinson’s story needs to be more broadly understood. In Ireland, there is no public funding for Parkinson’s – all the funding is raised through bake sales, car washes and the like. That’s pretty shameful.

“A lot of people think Parkinson’s is just an ageing disease, but it’s much more complex than that. You’re unable to control any muscle group, your swallowing – I’ve had cramps in my eyelids before, because of this. The understanding isn’t there, and that’s why I’ve wanted to highlight my struggles with Parkinson’s.”

“Parkinson’s is a relentless condition,” Gary explains. “But you can create a positive way of dealing with it. We talk a lot about the people who have Parkinson’s, and how they’re dealing with it. But the other group of people hugely affected are people who live with their loved ones having Parkinson’s.

“Watching someone you love to deteriorate is a real challenge. They – in my case my wife, my children – don’t get people asking them how they are, they just get people asking after me. If I could make one ask as part of World Parkinson’s Day, it would be for people to look out for the families of people with Parkinson’s as well, because this condition makes a huge difference to them as much as anyone.”

Take up Athletics or running