Couple hit by motor neurone disease diagnosis fundraise to help others

Wed, 18 Aug, 2021 - 17:35

Niamh Griffin, Health Correspondent

After being hit by a devastating motor neurone disease diagnosis, a Wexford couple have stepped up a gear to improve services for all sufferers of the debilitating disease by raising money for a charity to hire more expert nurses.

At present the Irish Motor Neurone Disease Association (IMNDA), has just four specialist motor neurone disease nurses across the country and is 80% supported by direct fundraising.

Derbhla Wynne fundraising executive said these nurses act as a guide to the large array of HSE service patients' needs as well as giving clinical care.

“They also play an active role with healthcare professional education to ensure best standard and practice of care is delivered to families at all times,” she said.

Sinead McGrath and her husband Malcom. “It used to be the case Sinead could be left alone for two or three hours, but now she might need to move her arm or need a drink so it is 24-hour support.” Picture: Patrick Browne

Motor neurone disease is a neurological condition which attacks nerves on the brain and spinal cord. It can affect how you eat, walk and breathe although it proceeds at a different pace for everyone. There are 399 people with MND in Ireland currently.

Ms Wynne said it is difficult to estimate how many specialist nurses are needed, saying they work with the HSE to offer “very personalised support” as each patients’ needs are different.

“In the ideal world it would be wonderful to have more nurses,” she said.

In May last year Sinead McGrath (44) should have been on a scuba-diving trip to mark her 25th wedding anniversary. Her growing worry about a lingering foot injury combined with memories of the tragic death of her father in 2014 from motor neurone disease, led her instead to seek help from St Vincent's hospital. The family was aware the first sign of muscle weakness can be 'foot drop'.

Sinead McGrath who in May last year should have been on a scuba-diving trip to mark her 25th wedding anniversary. Picture: Patrick Browne

Covid-19 visiting restrictions meant she could not be accompanied into the hospital, so Ms McGrath found herself sitting alone in St Vincent’s Hospital to hear an MND diagnosis.

An offer was made to care for her full-time in hospital, but the avid hiker was determined to get home to Wexford.

Over the past 15 months, the McGraths have instead learned to rely on their IMNDA nurse Katie Kinsella for connecting with the HSE locally and Beaumont Hospital.

Ms McGrath said: “A massive thanks to Katie who is always available to help and offer advice for our ever-changing needs. Also to the team in Beaumont hospital and the team in Research Motor Neurone who carry out research into the disease.”

Her husband Malcolm said: “I keep Katie central, she can update everyone else. She has an area from Wicklow to Kerry and yet has time to talk, visit and advise us when needed.”

Sinead McGrath one of 399 people with motor neurone disease in Ireland currently. Picture: Patrick Browne

Ms McGrath worked from home at first but as her illness progressed that became impossible.

“It used to be the case Sinead could be left alone for two or three hours,” Mr McGrath said. “But now, she might need to move her arm or need a drink so it is 24-hour support.”

Earlier this year he cycled 1,200 km in his first fundraiser, mostly indoors on a turbo-trainer near Sinead instead of out on the roads.

“Overall, I raised €10,605 for both IMNDA and Research Motor Neurone,” Mr McGrath said.

“All the pain I suffered during this incredible cycle was a little pain in the legs compared to that of my wife so it was worth it, especially when my phone kept beeping with donation notifications.”

Countdown is on for the raffle to win Tadej Pogačar signed jersey. Tickets https://t.co/pSTX6saF32
Proceeds in aid of Irish Motor Neurone Disease Association @IMNDA @Tour_de_Pologne @Mattw1nston @PaulaOCal @lavuelta @bert_bvl @AlisonTodayFM @nikkihayes #mnd #als #Wexford https://t.co/IYdXdXNSAd
— Malcolm McGrath (@lochdara) August 15, 2021

This success led to plans for a raffle with prizes mostly donated by Wexford bike shops and hotels. Mr McGrath reached out to his cycling network, and, as he put it, someone who knew someone who knew someone donated a signed jersey from two-time Tour De France winner Tadej Pogacar.

He said he was delighted to see the Slovenian cyclist also taking bronze at the Tokyo Olympics, saying: “The more money we raise, the more we can help other families like ours.”

Find raffle details at www.raffle4imnda.ie

Four sisters running 400 miles in four weeks in different counties for aunt