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21/09/2021

Local man on fundraising drive after wife's motor neurone diagnosis

Local man on fundraising drive after wife's motor neurone diagnosis

Malcolm McGrath pictured with his wife Sinead and specialist Motor Neurone nurse Katie Kinsella (right)

A man has embarked on a mammoth fundraising effort for the Irish Motor Neurone Disease Association after his wife was diagnosed with the progressive neurological condition in May last year.

Kildare native Malcolm McGrath, who has family ties to Edenderry in Offaly and now lives in Wexford, took on a gruelling cycling challenge in May to mark a year since his wife Sinead's diagnosis. His 1,000k in May cycle raised over €10,000 for both The Irish Motor Neurone Disease Association (IMNDA) and Research Motor Neurone. He continues to come up with ways to raise money for research into the disease and the IMNDA to help other people in a similar situation.

Malcolm and Sinead's world were turned upside down in May 2020, during the first Covid-19 lockdown, when Sinead was diagnosed with Motor Neurone Disease. Covid had already put an end to the couple's dream holiday to the Dominican Republic where they were due to celebrate 25 years together and their 17th wedding anniversary. 

That same month, Sinead went to the doctor due to a limp and after some tests, was diagnosed with Motor Neurone Disease, the same condition her father had battled seven years previous. "So while we were supposed to be flying out on holiday, she was in hospital getting her diagnosis alone as visitors were not allowed due to the pandemic," Malcolm said.

Within a week, the couple registered with Irish Motor Neurone Disease Association (IMNDA). "From that moment, our fears were made a little easier when the staff reassured us that they were there to help in any way they could. It’s very difficult to describe the support we got from them.

"Since then they have supplied, a specialist powered wheelchair, electric bed, IPad with communication software, call assistance technology. They also provided home care grants to allow carers come in and help and counselling grants for the whole family. On top of that, we have a nurse who we can call. She has an area from Wicklow to Kerry and yet has time to
talk, visit and advise us when needed. There are only 4 of those for the entire country."

It was this support that inspired Malcolm to help in fundraising for the organisation as well as Research Motor Neurone who Malcolm and Sinead were also put in contact with. "They are trying to find an understanding of MND and hopefully a cure. We do whatever research testing is available to us. They also provide their app which allows both myself and Sinéad to give feedback on the illness, from a patient and a carer’s point of view. We meet some of their team in the
fantastic clinic in Beaumont Hospital headed by world-class MND specialist Prof Orla Hardiman. Both myself and Sinead help them with research and they also are quite often looking for non-MND patients to help out with research. They can be contacted the following link www.rmn.ie/www-rmn-ie/ 

"Both of these charities provide support to people with MND in terms of care and research into the condition. But all the pain I suffered during this incredible cycle was a little pain in the legs compared to that of my wife who is suffering from MND so it was worth it," Malcolm added, "especially when my phone kept beeping with donation notifications."

€10,000 and 1,000k later, Malcolm had another fundraising idea, this time to hold a raffle for a signed cycling jersey, but not just any cycling jersey. He reached out to his Facebook contacts and managed to secure a signed jersey from the 2020 and 2021 Tour De France winner Tadej Pogacar. You can buy a ticket at www.raffle4imnda.ie or find out more on a dedicated Facebook page BY TAPPING HERE.

PICTURED: Malcolm and Sinead on their wedding day with their son Jordan

Malcolm is determined to help his wife in any way he can and now has to help her with more tasks day-to-day than before. "I have now had to spend more time helping her with some basic tasks. That’s how quickly this condition has moved on. Sinead is now constantly in a wheelchair and needs several different lifting aids to move between her bed and armchair or to a power wheelchair.

"We have extra carers coming in now to help with breakfast, lunch and light duties while I can get other stuff done, including shopping, garden maintenance, clothes washing. We had to buy a new wheelchair accessible vehicle so now we are a bit more mobile and travelling is more comfortable.

"The more money we raise, the more we can help other families like ours," Malcolm said.

"Since Sinead’s diagnosis, we have heard of quite a few people in the Wexford area with MND. Each person has different symptoms and has their own set of problems leaving the IMNDA with the difficult task of having to supply such a wide
variety of equipment and support.” 

Having experienced it himself and heard other people's stories of MND, Malcolm vows to continue his fundraising efforts while caring for his beloved wife. You can support him in his efforts and keep up with the fundraisers by visiting the 1000kinmay Facebook page HERE.

Malcolm said Sinead would like to thank the amazing work of the Irish Motor Neurone Disease Association who also helped her dad throughout his MND illness in 2013/2014, and a massive thanks to Katie Kinsella who is always available to help and offer advice for the family's ever-changing needs. Also, the team in Beaumont Hospital and the team in Research Motor Neurone.

WHAT IS 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.

MND strikes people of all ages and there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.

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 over 400 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.

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