Given three years to live: I’m here 15 years later

The Irish Motor Neurone Disease Association will host a fund-raiser this weekend. CHRIS DUNNE talks to a Cork man who is from one of 400 families in Ireland supported by the IMNDA
Given three years to live: I’m here 15 years later
Denis Fitzgerald and Helen Nyhan. Denis was diagnosed with Motor Neurone Disease 15 years ago.

EVEN in these strange times when the global pandemic has changed our world so much — we can still enjoy a well-deserved cuppa.

“A chat over a cup of tea with loved ones can lift the lowest of moods and we all know how much we need a lift at the moment,” says Roisín Duffy, CEO of The Irish Motor Neurone Disease Association (IMNDA).

“This month, we would love you to be part of Drink Virtual Tea for IMNDA,” adds Roisín.

“Throughout June, we’re asking the nation to join us as we raise a cup (and a few euros) for IMNDA.”

MND is a progressive neurological condition that affects the motor neurones or nerves in the brain and the spinal cord. This means messages gradually stop reaching muscles, leading to weakness and wasting.

The IMNDA provide essential services and supports to more than 400 families in Ireland living with the condition.

“The association is a source of great support for people with MND,” explains Helen Nyhan.

Her partner, Denis Fitzgerald, was diagnosed with the condition in 2005. It was a bolt from the blue.

“Denis was suffering symptoms for a year and a half year previously,” says Helen.

“His foot began dragging and Denis developed a limp. He said, ‘something is wrong with me’.

The medics suspected Denis’s symptoms were related to a previous condition he had suffered from; melanoma, which had re-occurred. They explored that avenue first.”

Little was known about MND 15 years ago.

“We had never heard of it and we had no idea what it was at the time,” says Helen.

The couple, who live in Kinsale, got a shock when Denis was diagnosed with MND.

“I was always very active before MND took hold,” says Denis, aged 66.

“I used to walk, run, and I always enjoyed gardening. I like sport and I am an avid GAA fan and I loved going to matches.”

Denis was an all-rounder.

“I loved singing and playing the guitar. Folk songs and ballads were my favourites. I played music socially, always having my guitar in the boot of the car, and Helen and I really enjoyed the sociability of the sing-song.

“Now my speech, my swallow and my breathing muscles are compromised and I can no longer sing.

“Due to stiffness of my arms for a number of years now, I can no longer make the chords or strum my guitar, which is very frustrating for me.”

But Denis and Helen still enjoy music.

“We still get to live music events and I listen to music regularly.”

MND can take its toll.

“My arms and leg muscles are compromised too,” says Denis.

“My hands stiffened up. The effect on my body was gradual and I was fortunate the disease didn’t progress quickly. I have two sticks to walk short distances around the house and I also use a wheelchair and a mobility scooter.

“Fortunately, I still drive an automatic car with some adaptations to suit my needs. The IMND Association, always so helpful, assisted me in getting a motorised wheel-chair.”

Denis and Helen enjoy being mobile.

“We are always out together and we like doing things together,” says Helen, who works 30 hours a week outside the home in a local pharmaceutical plant.

“We still get out walking, perhaps a bit slower than before! We still do our walks, meet friends, and go out to eat in restaurants before Covid-19 happened. We still go on holidays. MND didn’t take over our lives. We didn’t let it.” Helen and Denis have a positive outlook.

“When Denis was diagnosed; he was given three years to live. The prognosis was not good,” says Helen.

“Thankfully, 15 years later; he is still here.” And the couple still support one another; are always there for each other.

“Denis used to do all the gardening,” says Helen.

“Now I do it. Life changed for us.”

But their positive attitude to life didn’t change.

“We don’t do negative,” says Helen. “We live every day as much as we can.”

Denis, valuing his independence, used to like going to the pool for a swim.

“Now he’s on his exercise bike every day.”

Denis, with the support of Helen, and the support of IMNDA, lives life to his fullest potential.

“The IMND Association is a brilliant source of support with people who suffer from MND,” he says.

“They offer valuable advice, helping people to get essential requirements that they need to live their daily lives as time goes on.”

MND, a progressive neurological condition, is often referred to as the 1,000 day disease as most people die within 1,000 days of diagnosis.

“The association helps us out enormously, including funding for physiotherapy” says Denis. “And I have the benefit of a speech therapist.

“At the beginning, when I was diagnosed, we got in contact with the IMND association in Dublin.

“A nurse from the association came to meet us to offer us advice and the neurologist was very positive in helping us mange everything and advising us not to look too far ahead.

“Dr Aisling Ryan, neurologist, runs an MND clinic in CUH which is excellent. We get to meet not only the Neurologist, but Respiratory Consultant Dr Des Murphy, Physiotherapist; Speech therapist, Occupational therapist, Dietician, and the helpful MND assistant nurse, Katie Kinsella, all in one day. They all converse and discuss patients’ requirements and progression. Dr Ryan’s team are an invaluable support for MND patients in managing their disease,” says Denis.

“We have regular appointments at the clinic and we can go there any time in between appointments if we run into any problems. It is nice to meet others who are in the same situation as you are. We made friends, some you see year after year. Some you don’t see again. That is the reality.”

Denis has wonderful support from his nearest and dearest.

“My two sons, Eamonn and Cathal, and their wives, my daughter Sinead, her husband, and my six grandchildren are always on hand providing support. My grandchildren are a great joy to me and they really brighten up my day when I see them. My sisters Noreen and Sheila are there for me too.”

A virtual tea day takes place in aid of IMNDA on June 21.
A virtual tea day takes place in aid of IMNDA on June 21.

Denis and Helen are encouraging people to support Virtual Tea Day on June 21 in aid of IMNDA.

“We couldn’t say enough about them,” says Helen.

“The association is always supportive. They are brilliant, so caring, so positive. If you are having a bad day, you can call them and they are on the other end of the phone line, there to cheer you up, advising how to manage your day and get around it.”

Denis is surrounded by positivity.

“In the beginning I was very down and out,” he says.

“When MND strikes, it stuns you. Fatigue is a big factor having MND. I focus on the things I can do, not on the things I can’t do. I am enjoying my life and making the most of every day. Helen has a huge positive effect on me as she is such a positive person always in great form and a ‘glass half full’ type of attitude always.

“We enjoy every day,” says Denis.

“All you have is today so live every day to its fullest.”

Helen and Denis, always supporting each other, will put on the kettle supporting IMNDA on Sunday, June 21.

“When you reach out, they are always there, always so helpful” says Helen, who raised €4,000 for IMNDA abseiling off the roof of the Hogan Stand in Croke Park with her daughter, Katie.

“We did The Echo mini-marathon too for the association,” says Helen.

Sharing a cup of tea always brings people together.

“Despite social distancing we can still be together,” says Roisín Duffy.

“Whether it be a cup of tea during your Zoom chat, a hot cuppa in the back garden with friends (all social distancing of course), or a keep cup in the park, we would ask you to join us for Drink Virtual Tea for MND.”

ABOUT 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 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 an MND Nurse. 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 83% of its income.

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. There are currently more than 410 people living with MND in Ireland. It is often referred to as the 1,000-day disease as most people die within 1,000 days of being diagnosed. One person dies every three days from MND.

HOW TO SUPPORT

IMNDA estimates a loss of about €1.4 million by year end due to the Covid-19 pandemic and needs as much support as possible.

To organise your very own Drink Virtual Tea for IMNDA event in or around June 21, all you have to do is visit imda.ie and register your virtual tea day event.

For more information email fundraising@imda.ie

To make a tea donation:text MND to 50300 and donate €2.

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