Friday 23 February 2018

I don't want to die. I go for long walks in the country. And on those walks I hope and hope and hope

The diagnosis of motor neurone disease has taught Nicky McFadden to value everything, she tells Donal Lynch

Donal Lynch

Donal Lynch

FOR months the hurtful rumours had swirled around Athlone. Rumours that Nicky McFadden was drunk. That she had Parkinson's disease. That she had multiple sclerosis.



She can smile ruefully about the cruelty of casual talk now, because, in fact, the truth about her slow, sometimes slurred speech was crueller still. On the afternoon of Thursday, May 31, the Longford-Westmeath TD sat in clinic with Professor Orla Hardiman at Beaumont Hospital in Dublin and learned that she had motor neurone disease. They call it "the 1,000-day illness", because that's generally how long patients are expected to live. As it progresses it lays waste to the motor nerves, which control essential functions like swallowing and breathing. And even though Nicky had steeled herself for bad news -- she had been told that there was a likelihood that she had the condition -- still the diagnosis, when it came, was like a punch to the stomach.

"I was just in shock for a second. I stamped out of there," the softly spoken deputy remembers of her immediate reaction. "I was so bold. My sisters were very polite. On the way out I asked Professor Hardiman, 'Do I need to pay you?' She said 'No' -- it was a public clinic. I asked her, 'Then can I please have the prescription to prolong my life.' She was so gracious and direct. There was no beating about the bush."

Her two sisters were with her. "They were bawling, just heartbroken," Nicky recalls, her own voice tremulous. "They got into the car and sobbed their way down the motorway, back to Athlone." There, Nicky's brother-in-law had sandwiches and tea and coffee ready. "We took out the bottle of brandy and had a few glasses of that, too. We needed it. It was hard to take it all in."

Her son, Eoin, was in the middle of doing nautical science exams so they waited before telling him and her daughter, Caren. "They were both devastated," she recalls.

The hardest part of all, she tells me, was relating the bad news to her 82-year-old father. "That broke my heart," she says. "That was very, very hard. But his reaction made it a little easier. He said, 'It's not the end of the world.' He was upbeat and positive. He was like that for me."

In a way, the diagnosis, devastating though it was, also came as something of a relief for Nicky. Like many people who have motor neurone disease, she at first thought that the problem was localised to the area in which the symptoms were first seen. According to one doctor she saw, she merely had an infection in her windpipe. As time went by, though, the prospect that she had something more sinister became increasingly real. "It was very hard not knowing what was going on. I was going from Billy to Jack. I went to the Bons, to Vincent's, all over."

Her journey ended with Prof Orla Hardiman, a noted neurologist and the national expert in motor neurone disease. Six years ago Hardiman, along with College of Surgeons fellow Matt Greenway, discovered a gene called ANG, which may be responsible for some forms of motor neurone disease. Hardiman has also won prestigious awards from the American Academy of Neurology and the American motor neurone association for her work.

"The week before the diagnosis I saw Orla and she felt pulses in my arms," Nicky remembers. "She told me, 'In all likelihood you have it.' That was hard to hear but I did still have some hope at that point that there would be a different result."

It was a colleague of Hardiman's who conducted an Electromyogram (EMG) study -- a gruellingly painful procedure for evaluating the electrical function of motor nerves. "When they stuck the needles in my throat and tongue, the machine started going berserk," Nicky recalls. "I knew then. I knew before Orla told me."

Naturally there was a temptation to research the disease herself. "I went on Wikipedia and read about it. It called it a progressive, fatal disease. It told me I have only five years left.

"I intend to be here for a lot longer than that."

When she tells you she will fight this, you tend to believe her. Nicky McFadden has been through tough times before. In 1993 -- the same year her mother died -- she separated from her husband. "That was a tough time, a double blow," she recalls. "There was no divorce in those years, we just got on with it. I'm a battler."

She raised her two children. Unlike so many of our career politicians she had a life before Leinster House, working as a medical secretary for eight years, and with the ESB. A former community worker in Athlone, she was elected to the Seanad in July 2007 before being swept into the Dail in the 'Fine Gael spring' earlier this year. Her simple, sincere desire to continue with her work is simultaneously awe-inspiring and heart-rending.

"I will never, ever pack in politics. It means too much to me," she says. "In Athlone I have to retain the brigade. I have to get a new gym for the regional sports centre. And I need a new dressing room for the little theatre. I am totally committed to getting on with that work."

Understandably, perhaps, she is somewhat squeamish about becoming 'the face of motor neurone disease', and doesn't want to be "defined by it". At the same time she understands the need for further funding and research, and while I am with her there are discussions about hosting a fundraising coffee morning at Leinster House. She seeks inspiration from the broadcaster Colm Murray, who appeared in a widely seen RTE documentary about his own battle with the illness. Murray is also a patient of Prof Hardiman.

"Colm is from Moate, which is in my constituency. He is a great man. He has been very positive through this. It is a great example."

The reaction from the political community has been overwhelming, she tells me. "They have all been so supportive. The chief whip [Paul Kehoe] has been amazing. Mary Mitchell O'Connor and [Cork North West TD] Aine Collins are very good friends. The Taoiseach has also been very supportive. I am so lucky. About 20 cards came in the post this morning."

Her illness is in its early stages now. So far only her speech has been affected -- she limits herself to no more than three minutes of public speaking at any one time -- but there is no pain and she's hopeful that the disease's advance will be slowed considerably by the drugs she's taking.

"For the last week I've been feeling quite tired. But that could be the medication. I'm not sure."

Motor neurone patients all live in hope of a new drug, a medical advance that may solve the riddle of this terrible illness.

According to Prof Hardiman, Irish research is well integrated into international work and is funded by grants from the European Union and the Health Research Board. Hardiman is working with colleagues in Trinity College to develop a new drug which works in mice.

Building on the professor's own research, a team lead by Prof Jochen Prehn at the Royal College of Surgeons recently discovered how angiogenin, the protein made by the ANG gene, can protect motor neurone cells from degrading.

This is the first time that the mechanism of the angiogenin protein has been understood, and the discovery may lead to new therapies for the illness.

Like Colm Murray, Nicky would like to take part in a trial if a new drug seems to have potential, but it's early days yet for both the Trinity compound and for angiogenin.

"Drugs that seem to work in mice still need to go through expensive testing before they can be tried in humans, and finding backers for this kind of work is always challenging", says Prof Hardiman.

"But the field is moving very fast and we are confident that we will find new and better treatments that will slow down disease progression."

The success and tragedy of the last few years have left Nicky philosophical, but one thought is constantly at the forefront of her mind: "I don't want to die. I want to live. I go for long walks in the countryside. And on those walks I hope and hope and hope. There have been novenas. I know people will be pulling for me."

The writer Nuala O'Faolain once said that the death sentence of a brain tumour diagnosis had taken the colour and goodness out of her own life. For Nicky the opposite is true: since the diagnosis, life has taken

on an increased richness. Her children have moved back to Athlone and she cherishes their company.

"I value everything now," she tells me, her voice cracking with sadness. "Everything. I was out the last night and the music was amazing. [Singer-songwriter] Carol O'Sullivan sang -- she touched my heart and the hair stood up on the back of my neck."

Soon she will take a well-earned holiday to France with her family. For now, though, there is just the evening and the endless night to get through. Through a prism of tears and hope, small pleasures are savoured: "I'm going out tonight to the chalets out by the river, and I'll have a few glasses of Murphy's and we'll have steak. There is life to live yet."

Sunday Independent

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