Tuesday 28 March 2017

'They told me I'd live for 12 months and that everything after that would be a bonus'

After his own diagnosis of motor neurone disease came like a bolt from the blue, Paul Lannon tells Áilín Quinlan how he's raising awareness and helping others in his shoes

Paul Lannon, who has been living with MND since 2011, with his wife Sandra, at a visit to the Áras in May 2015 Photo: Martin Maher
Paul Lannon, who has been living with MND since 2011, with his wife Sandra, at a visit to the Áras in May 2015 Photo: Martin Maher

In June he climbed four mountains in 16 hours - by November he was struggling to do four push-ups in a row. For Kilkenny-native Paul Lannon, the descent into illness was both rapid and wholly unexpected.

Not yet 40 when he did the Four Peaks challenge, the former bar worker and fork-lift driver was a successful executive with JP Morgan, earning an excellent salary, and travelling all over the world for his job, visiting regions of China, Russia, and South America.

He often jokes that the only continent he hasn't set foot on is Africa. Despite a heavy workload as vice president of operations with the bank, Paul found time to help raise more than €16,000 for Focus Ireland during the gruelling Four Peaks Challenge - climbing four Irish mountains in three days in June 2010.

"At the time I was 15 stone and led a completely sedentary lifestyle; the most exercise I got in a day was walking the dogs for 20 minutes before leaving for work."

Paul was always a guy who liked a challenge and never shirked hard work - ever since he was old enough, he'd worked in the family pub, known as Dickeys, in Knocktopher, Co Kilkenny. He later managed a bar and drove a fork-lift truck in England, and spent time in construction in Germany before returning to Ireland, landing a job in the logistics sector and working his way up.

"If something came up at work that I thought would be a challenge, I'd put myself forward for it," he recalls, adding that he trained from February 2010 until June, losing nearly two stone by the time the event took place.

"I was over the moon about it," he recalls now, "and we raised over €16,000 for Focus Ireland too."

Read more: 'This is probably going to rob me of the second half of my life'- Andrew Brennan (33) on being diagnosed with Motor Neuron Disease

A motorbike fanatic and self-confessed "petrol-head", Paul, who now lives in Dunleer, Co Louth, had transformed his previously sedentary life to lose weight and get fit when the hammer-blows began.

In September, just a few months after completing the Four Peaks Challenge, the executive noticed his index finger and wrist were starting to get tired more easily.

"Using the computer mouse at work, I'd find my index finger and my wrists were getting tired and I'd use my left hand instead." Initially, he recalls, his doctor thought it was a repetitive strain injury - Paul spent many hours on the computer at work.

However, he was also starting to notice that while working on his beloved motorbike, his right arm was becoming increasingly fatigued, and he always seemed to involuntarily drop nuts and bolts.

By November of that year, he noticed that when he was in the gym - he'd kept going in a bid to maintain his fitness levels - he couldn't do his push-ups.

"I was struggling after four or five of them. At that stage I also noticed that my index finger was bending."

Concerned, he sought advice, underwent a battery of tests and on May 8, 2011 was officially diagnosed with motor neurone disease (MND).

Read more: ‘Wheelchair rugby saved me’ after testing diagnosis, says Amy

It was just a month before his 41st birthday and less than a year after his victorious climb of the Four Peaks, when his doctors told him they could guarantee he would live for 12 months and that "everything after that would be a bonus".

Paul was now one of a group of some 350 people living with MND in Ireland. MND is often referred to as the 1,000-day disease as most people die within 1,000 days of being diagnosed.

"I went from being able to lift two kegs of beer at a time to needing two hands to lift a pint glass of water," recalls Paul, who says his wife Sandra and family network have been a tremendous support.

He resigned from his job in June 2014 and instead focused on becoming an ambassador for the Irish Motor Neurone Disease Association (IMNDA), which provides support to people with motor neurone disease, their carers, families and friends.

"I do whatever I can do to help raise awareness and funding while I'm still able to do it," he explains.

"I go to events and give talks, and help other, recently diagnosed people come to terms with the disease."

Read more: 'Me and my dad joked about going through therapy together... he passed away six weeks later' - a young Irish woman's harrowing story

Paul can no longer lift the kettle. Dressing himself is now impossible. He also had to get rid of his motorbike, another major blow - since his youth, Paul had a fascination with motor sport.

His father and uncle had always raced go-karts and the pair were well known in the go-kart world with 15 Irish titles between them.

Paul had eagerly followed their footsteps, racing go-karts, cars and motorcycles. Now, however, Paul cannot move his arms above chest height. His fingers and thumbs don't work as they used to, and he experiences difficulty with speech and eating.

"You have bad days, especially when you're trying to do something and you drop something for the fourth or fifth time in a row.

"Sometimes it is difficult, but you try to stay positive and I have a great support network."

Paul urges everyone to support the IMNDA Drink Tea for MND day, which takes place tomorrow as part of MND awareness month. Supporters can literally 'lift a cup' to IMNDA by ordering the special Supervalu Tea Pack and organising their own 'Drink Tea for MND' day.

"This is an extremely worthy cause and we would encourage as many people as possible to lend their support to the campaign," says Des O'Mahony, SuperValu marketing manager.

Motor neurone disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord.

This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe.

Read more: Motor Neuron Disease: ‘This disease may have robbed me of my voice but I’m determined to be heard’

However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with motor neurone disease, their carers, families and friends.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by three MND nurses. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association, who generate over 86pc of its income.

* For further information visit imnda.ie, phone 01 8730422 or contact the helpline: Freefone 1800 403 403 or email: info@imnda.ie. If you can't organise a tea day it's possible to make a small donation. Text MND to 50300 and donate €2.

What is MND?

Motor neurone disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord.

This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe.

However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with motor neurone disease, their carers, families and friends.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by three MND nurses. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association, who generate over 86pc of its income.

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