Health

Saturday 20 September 2014

The fight for life against motor neurone disease

Eimear Lynch-Rowe and her husband, Neil, found love, but then they discovered that Eimear had motor neurone disease. They tell Joy Orpen there is treatment out there to help, but the HSE is not willing to stump up the money

Neil Rowe and his wife, Eimear Lynch-Rowe
Neil Rowe and his wife, Eimear Lynch-Rowe

'In this country, no matter how ill she is, or how poor the quality of her life, she is not allowed to take her own life – yet someone in the HSE can decide when her life is over."

With these chilling words, Neil Rowe, 50, encapsulates the extraordinary difficulties that he and his new wife, Eimear Lynch-Rowe, 47, are facing as she becomes increasingly debilitated by motor neurone disease (MND).

Englishman Neil, a former signwriter, met delightful Eimear three and a half years ago, in Wexford. The two were instantly besotted. "I thought she was really pretty and completely genuine," says Neil. "Her outgoing personality complemented my more introverted nature."

"It was his sense of humour that attracted me," says Eimear, a bubbly, bright and very positive woman. "And the fact that he completely 'got me.'"

The pair also shared an interest in music, in motor sport and enjoy trips to Wexford's beautiful beaches with their dog, Frank.

So they made a pretty good team and, for 18 months, the relationship was blissful.

Then, in early 2013, Eimear's toes began to turn under and, shortly after, she had a minor car accident and damaged her wrist.

As time passed, her left foot began to extend like a ballerina's (foot drop) and Eimear began to lose control of her leg. "At the beginning, we thought maybe she had a trapped nerve from the accident," says Neil. "The people in orthopaedics in Wexford and Waterford were concentrating on the wrist, but not the other leg problems. It turned out the accident had nothing to do with what was happening. Eventually, we wrote to a consultant and were referred to a specialist."

In August 2013, they were told that MND was a possibility. "When I asked what this was, I was given a website address [for MND] on a scrap of paper," says Neil. "We got a terrible, terrible shock and shed many tears."

In September, the Rowes sought a second opinion and subsequently met consultant neurologist, Professor Orla Hardiman.

"Professor Hardiman let Eimear talk about her symptoms in her own words. She did all the tests and, a few weeks later, gave us, in the most professional manner possible, the devastating news that Eimear did have MND," Neil says.

The Irish Motor Neurone Disease Association (IMNDA) says this is a progressive, neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord.

This means that messages gradually stop reaching the muscles. MND can affect how you walk, talk, eat, drink and breathe. Currently, there is no cure.

In the 10 months since all this began, Eimear has had to stop working in the hospitality industry, while Neil now has to stay home to care for her. In the process, the couple used up most of their savings.

"If we'd had a proper diagnosis, our insurance would have covered the mortgage payments, and Eimear would have got a disability benefit, and so on," says Neil. Since the onset of the illness, she has lost power in her legs, lower back and arms, while her speech is rapidly deteriorating, as she is losing control of her tongue muscles.

"In a year, she has gone from being mobile to depending on a wheelchair, a hoist and a sling," says Neil.

Yet, unbelievably, Eimear doesn't appear to feel sorry for herself, and remains committed to optimising the strengths that she does have, including her ability to think clearly and to love those closest to her.

Currently, she is using a Nippy machine for non-invasive ventilation (NIV) at night. This helps her lungs pump oxygen, through a mask.

However, a time will come when Eimear's lungs will fail completely, and the only solution to this would be invasive ventilation.

This, according to Neil, would require a pipe to be inserted into her throat so that oxygen can be delivered round the clock to her lungs. This pipe will be connected to a machine very similar to the Nippy they currently use. However, the Rowes say they have been told that the HSE will not sanction invasive ventilation for Eimear, as they estimate that her care will cost in the region of €300,000 a year.

The fact remains that, while most people with MND would not choose to go this route, the Rowes are certain that invasive ventilation is the right thing for them. They make the point that Eimear is still comparatively young, and, like most loving, newly married couples – they wed last November – they want to enjoy each other's company for as long as possible.

"When her lungs fail, she will still have a fully functioning mind, and she will be able to 'talk' with the help of an Eyegaze communication system," says Neil.

A video camera next to a monitor will track Eimear's eye movements so, when she focuses on specific responses, these will then be conveyed in her own voice – she has been "banking" her speech for use in this programme.

So the couple are baffled by the HSE's response.

"I can accept my diagnosis," says Eimear. "But I'm not happy to accept that there is a treatment that will prolong my life, and yet I can't have it.

"We had a question put in the Oireachtas about my case recently by Independent TD for Wexford, Mick Wallace."

Official records show that Labour TD Alex White responded, saying, "The HSE will discuss the issues directly with the individual concerned, and her family, but, in these circumstances, it would be wrong to draw the conclusion that this is in any way reducible simply to the question of cost, because there are clinical considerations as well."

"Who, specifically, at the HSE will talk to us?" asks Eimear. "I need a name and number, but keep being fobbed off."

Meanwhile, Neil questions the validity of the figure set by the HSE for Eimear's care, especially given the fact that he is already caring for her around the clock, while she has a large, extended family who would be supportive.

"We've been told she needs a nurse 24/7. But, if a machine breaks down, a nurse can't fix it. And I can be trained to do most of any additional tasks in looking after Eimear," Neil says.

The final word must, of course, go to Eimear, who talks with a quiet determination, and who has a great sense of humour in spite of her unspeakable situation. "Assisted suicide is against the law in Ireland," she says. "I want to live, but I am being told I can't. Where, then, is my 'right to life'?"

Read Eimear's inspiring blog at www.eimearsfightforlife.blogspot.com

Irish Motor Neurone Disease Association, Coleraine House, Coleraine St, D7, freefone: (1800) 403-403, or see www.imnda.ie

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