Micheal Clancy (59) was a rugby referee for many years. From Clare, but living in Limerick, this dedicated Munster Rugby fan and secretary of the North Munster Association of Referees had the privilege of refereeing many of the country’s top players down through the years.

“It’s as close as you can get to the game without actually playing it,” he says.

Michael, speaking slowly, says that he was officially diagnosed with Motor Neurone Disease in October 2016.

“I had got indications of it in August 2015, though. Still, it was a difficult day, hearing those words …”

Michael had noticed that his grip was failing in 2014. “I found it difficult to hold anything between my thumb and forefinger on both hands so it was difficult to hold tools like a hammer or screwdriver,” he says. “I put it down to old age and wear and tear and all of those excuses I didn’t know why my body was failing me as I was reasonably fit.”

Things came to a head when Michael’s sisters, who met up with him regularly, noticed that his speech was slurred.

“After chatting between themselves they faced me down and asked me if I was drinking as I was sounding drunk. When I told them the only thing I’d been drinking was tea they said you’d better get checked out and I did. That was in February 2014.”

Michael then underwent tests in hospitals in Cork and Limerick for a year before the suggestion was made that he might have MND.

“An indication is all it was. They said that I may possibly have a rare variant of MND.”

Most of what was said then went over his head but his next move didn’t help.

THE MISTAKE OF GOOGLING IT

“When I went home that day of course I did the most stupid thing in the world – I Googled it. What I read set me off for a few days. I know now that some of it wasn’t accurate for my particular situation which was why I shouldn’t have read all that stuff. I drove around for the next four days with tears down my face. I didn’t know how me and my family were going to cope,” he says.

By the time Michael got the official diagnosis last October, though, he had more or less accepted that he had MND.

“Once I had settled down after my initial crazy phase my sister started reading up on it and she found that the variant I have is less aggressive than some variants. MND is known as the 1000 day disease, from diagnosis to death is 1000 days or less generally. I have the best possible version of it and I have to keep that in mind and keep the bright side out.”

While there is no medication that can cure the disease as yet Michael is prescribed muscle relaxants. “They do help but it still progresses …” he says.

Michael decided to tell his story in order to let people know more about this disease.

“Most people wouldn’t even know what MND means or how the disease operates.”

Michael speaks highly of the support he has had from the Irish Motor Neurone Disease Association (IMNDA). He heard about it through his speech and language therapist who put his name forward for membership. “Their response was immediate,” he says. “Within two days I was contacted by phone and within a week I had the specialist nurse at my house. To me the association is fantastic.”

Michael is glad that he has someone to ring for example, if he notices a change in his condition.

“Those people cost money, of course, and that was part of my reasoning for being involved in the awareness campaign.

It’s about educating the public, but the fund raising aspect is just as important. Over 86% of what is collected in funding by the IMNDA comes through donations from the public so they’re very dependent on it.

It’s the only organisation in the country that deals with people that have MND – and their carers and families.”

Michael has found the association particularly supportive in the past year. In 2016 his mother died and also his wife, two months later.

“2016 was very tough …” he says.

He has had the joy this year, however, of becoming a grandfather to Archie, now four months old, who is ‘absolutely wonderful’.

Michael’s attitude to his illness remains very positive.

“I have enough support for now. My attitude is that I will stay as independent as I possibly can for as long as I can.”

One of the reasons he agreed to get involved in the publicity campaign is that he knows, in time, he may have to ask for more help.

“There may be equipment that I’ll need so while I can I’m doing what I can – building up brownie points, as it were!”

HELPFUL BUT BUREAUCRATIC

The HSE is helpful but tends to be very bureaucratic, he says, and may not respond quickly enough when new equipment is needed urgently.

“In three years’ time I might need a wheelchair and I’ll apply, but by the time it’s sanctioned and delivered I’d probably need the next version – a motorised one. It’s too slow a response. It’s not that the HSE don’t want to give it but it takes too much time to cross the t’s and dot all the i’s.

With the IMNDA you get the item quicker and when you’re finished with it it’s taken back and refurbished, if possible, so someone else can benefit from it.”

Michael Clancy would advise anyone diagnosed with MND to contact the support organisation.

“I’d say there are people with MND that have not declared to the Association – they are just dealing with it privately but to me the support I’m having is fantastic.”

ICE BUCKET CHALLENGE

There are 360 people living with MND in Ireland at the moment. One person is diagnosed every four days. There are four main types of the neurological condition – ALS, PBP, PMA and PLS – and while MND is progressive not all symptoms necessarily happen to everyone and it is unlikely that all symptoms will develop at the same time or in any specific order, says an IMNDA spokesperson.

“The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help and advice and home visits by an MND nurse.

“Counselling for the patient and one other member of their family is provided also.

“The association was set up in 1985 to provide care and support to people with MND, their carers, families and friends.”

The Ice Bucket Challenge was one of those social media campaigns that really captured the imagination.

People all over the world sat to be drenched with water to raise money for research into the progressive illness that is MND. And their efforts haven’t been in vain. In July 2016 the IMNDA announced that this global fundraising phenomenon has helped to make a significant breakthrough in identifying a key gene linked to Motor Neurone Disease.

Project MinE – which is in part funded by the Irish Motor Neurone Disease Association – has identified a new gene called NEK1, which is believed to be a gene that contributes towards the illness.

It’s hoped the breakthrough will ultimately lead to an improved outcome for the 110 Irish people who will develop Motor Neurone Disease every year.

MND is known as the 1000 day disease from diagnosis to death. During these 1000 days someone with MND gradually loses control of their limbs ultimately resulting in a loss of independence. Every day things we take for granted like walking, talking and eating may become impossible.

“The Ice Bucket Challenge raised €1.6m in Ireland alone,” Aisling Farrell, CE of the IMNDA says. “Over €600,000 went directly to research. This research, which includes Project MinE, is carried out by Professor Orla Hardiman and her team in Trinity.

The remainder of the Ice Bucket Challenge money is being spent on a variety of projects, including the funding of a third dedicated MND nurse whose job it is to help patients in their own homes.”

The IMNDA remains committed to complete transparency about how the Ice Bucket Challenge money is spent, with all details published on its website www.imnda.ie, she says.

“Again we would like to say thank you to those who drenched themselves in ice water two years ago”.

Contacts

For any more information on MND or the IMNDA please see www.imnda.ie or call 1800 403403.

Email info@imnda.ie

If you’d like to make a donation of €2 text MND to 50300.

Fancy supporting those with MND in another way?

The annual WALK to D-Feet MND will be held on Saturday, 15th July at 12 noon at Castletown House, Celbridge, County Kildare.

Register online for €20 per person. Walkers will also be able to pay on the day. Route is buggy and wheelchair friendly and kids walk free. Light refreshments and a t-shirt are included in the €20 payment.

To help support Michael and families across Ireland, the Irish Motor Neurone Disease Association wants people to Drink Tea for MND during the month of June. To organise a Drink Tea for MND event please email fundraising@imnda.ie or freefone 1800 403 403 to receive your Supervalu sponsored Tea pack.