Friday 30 September 2016

Hoping for a cure to life-limiting motor neurone disease: 'I wouldn't wish this on anyone'

Loretto Dempsey says she will not allow an extremely debilitating, life-limiting disease to dampen her enthusiasm for life. She explains how she manages to cope and talks about her hopes for the future

Joy Orpen

Published 22/06/2015 | 02:30

Enthusiasm for life: Loretto Dempsey. Photo: Gerry Mooney
Enthusiasm for life: Loretto Dempsey. Photo: Gerry Mooney

Even though she is pretty certain that her life will come to end much too prematurely, Loretto Dempsey has dedicated what little time remains to helping others.

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This extremely charismatic 50-year-old Dubliner is living with a disease that is usually fatal. She first became aware that something was wrong in 2013 when she began to experience weakness. "Things would fall out of my left hand," she remembers. In time, Loretto's doctor referred her to a neurologist, who recommended various tests. By then, the symptoms had increased. "I couldn't walk far, and my body was getting weaker," she recalls.

So the upcoming Christmas was extremely difficult for Loretto, her sisters Darlene, Martina and Cathriona, and their parents, Betty and Pat. "Nobody wanted to say anything, but my deteriorating health was on everyone's mind," says Loretto. "It was very definitely the elephant in the room. That was the first time I didn't make the Christmas dinner myself."

Loretto likes food and loved to cook. Her first career had been as a baker, when she was apprenticed to Johnston Mooney and O'Brien, back in the 1980s. "We'd go on day release, to Kevin Street, to learn about the science and techniques of baking," she says.

Over the years, Loretto worked in the bakery of various retailers, but she was increasingly being drawn to the very different world of IT. Having completed a computer course at night, she then became an integral part of the IT help desk at Arthur Cox, a leading Irish law firm.

So when her health began to fail in 2013, she naturally turned to the internet for answers. Her symptoms seemed to match those of motor neurone disease (MND), a progressive, neurological condition that causes damage to motor neurones, which carry messages from the brain and spinal column, to muscles throughout the body. This ultimately leads to an inability to walk, talk or swallow.

"We were 90pc sure," says Loretto. "You'd talk to various doctors and they would ask what I thought was wrong with me, and I would say it might be multiple sclerosis (MS) or MND. And they would say, 'Well, it's definitely not MS'. I think that was their way of gently letting it dawn on me."

In February of last year, Loretto was admitted to hospital for further tests. One day, she and her sister Martina were given the devastating news that MND was indeed the cause of her problems.

"We both started crying," says Loretto. "We weren't given any hope. Well, there is no hope. I asked how much time I had left, and was told two or three years."

Later that evening, the rest of her family learned of the diagnosis. "We just talked and talked, all night long," says Loretto. Fortunately, her innate practical and positive nature kicked into action. "I took the next week off work and spent the time telling friends; I was still driving at the time. And I told them at work."

Asked where she found the strength to carry on, Loretto shrugs and says: "There is absolutely nothing you can do about this. It is what it is."

Taking it a step further, she even manages to be positive. "I'm really glad I still have the time to tell the people I love that I do love them, and to let my friends know that I appreciate them," she says.

Right now, Loretto, who lives in the family home in Whitehall, is unable to walk, and uses a wheelchair. She relies on her family for all her other physical needs, as her hands no longer function.

"Mammy and Daddy get me up in the morning, using a hoist. Mammy has had to learn how to do my make-up, because she never used it herself. She dresses me, and then she sends me off to work," Loretto explains.

In the evening, Loretto's sisters give her a hand with showering; they watch television with her and then they help her into bed. Having met members of this remarkable family, you can be sure that endless banter accompanies all of their activities.

Losing her independence doesn't seem to trouble Loretto unduly.

"The hardest things for me to accept are the things that won't happen," she says. "Some years back, my sisters and I bought a tiny condo in America. Darlene and I used to talk about retiring there, but now I know that will never happen. Knowing I will not see Elliot and Heather [her nephew and niece] get married is a great sadness for me. And it's hard seeing Mammy and Daddy having to do so much for me, when they should be taking it easy."

Fortunately, Loretto is still able to work on a part-time basis, and this is due to her employers at Arthur Cox. "When they first heard I had MND, they ripped out a wall in the office and put in a sliding door. Then my colleagues were given smaller desks, so I could move around more easily. And when my sisters asked me to stop driving, in case I had an accident, the company decided to pay for a taxi, to take me to and from work," Loretto explains.

"Audrey, from HR, meets me once a week for coffee, and always asks if there is anything more they can do for me. They also raised a lot of money for MND during the recent ice bucket challenge. They have been absolutely amazing."

Loretto has participated in research projects, and will do anything she can, to help find a cure for this devastating illness. Right now, her attention is focused on the fun-filled, black-tie June Ball, in aid of the Irish Motor Nueurone Disease Association (IMNDA), which supports about 300 people living with this condition in Ireland.

Maeve Leahy, speaking for the organisation says, "MND is a degenerative, life-limiting disease, for which there is no cure. The average life expectancy for a person with MND is three to five years. Provision of specialist medical equipment plays a vital role in improving their quality of life. The IMNDA's ethos is to ensure rapid access to services for all clients. We also ensure that a percentage of the funds we raise goes into research."

The last word must go to Loretto. "No, I never ask, 'why me?' The better question would be, 'why not me?' My motivation is to do what I can to help find a cure, so others can be spared. I wouldn't wish this on anyone. But I do believe, one day, there will be a cure, and hopefully that day is not too far away."

The June Ball takes place on June 27, at the DoubleTree by Hilton, Burlington Road, D4. Tickets cost €90 and are available from the Irish Motor Neurone Disease Association, see imnda.ie or thejuneball.com, or Facebook 'The June Ball' or see Twitter @thejuneball

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