Friday 24 November 2017

'I hid the symptoms and I stuck my head in the sand' - Living with Motor Neurone Disease

Referee Michael Clancy dismissed early signs but as his speech became slurred, he began a battery of tests that confirmed MND, he tells our reporter

Face of new campaign: Michael Clancy is urging us to host ‘Drink Tea’ events to raise funds
Face of new campaign: Michael Clancy is urging us to host ‘Drink Tea’ events to raise funds
Ellen DeGeneres douses Kim Kardashian as part of the Ice Bucket Challenge in 2014

Daniel O'Connor

When people first meet Michael Clancy, they often mistake him for being drunk due to his slurred speech and unsteady gait. What they tend to not be aware of is that he is not drunk but simply ill.

The 59-year-old from Co Limerick is the face of a new campaign to promote awareness of Motor Neurone Disease (MND), a progressive neurological condition that leads to weakness in movement and speech. The disease is also known as amyotrophic lateral sclerosis (ALS), and was the cause behind the viral Ice Bucket Challenge in 2014, which raised €104m in donations.

Reflecting on when he first noticed signs of the disease, Michael mentions how symptoms were initially small, but he refused to tell others about them or accept them himself.

"I was finding it difficult to hold tools, like a drill or something small like the head of a screw in my hand," Michael says.

"I also found it difficult climbing and coming down off of a ladder, and eventually stairs. My speech was affected in that I felt I had to slow down to make myself understood.

"Initially I did the typical male Irish thing. I hid the symptoms and I stuck my head in the sand and said 'I'm getting old' or something like that."

He adds: "That would have gone on for two to three years but my sisters then noticed my speech - I was beginning to slur some words and they were concerned in case I was hitting the bottle."

Due to the impact it can have on balance, movement and speech, the symptoms of MND are often mistaken as the effects of being overly drunk.

This has resulted in a new awareness campaign being launched by the Irish Motor Neurone Disease Association (IMNDA), entitled 'I know I sound a bit drunk, but tea is the only thing I've been drinking.'

The campaign aims to raise awareness about the disease and to raise funds to put towards providing assistance to people diagnosed with MND in Ireland.

For Michael, it took years before he was even fully diagnosed with the disease due to its rare nature.

"I was going in and out to neurologists in Limerick and Cork for about a year," he says.

"It was kind of like a process of elimination. There was a menu of ailments and they literally had to tick them off.

"Eventually around August 2015, I was told 'there is the possibility you have a variant of MND' but I wasn't officially diagnosed until October last year."

The slow progression of the disease has been just one part of a tough few years for Michael.

Losing his wife and his mother within the space of two months before he was officially diagnosed, Michael spoke about how he couldn't bring himself to tell even his mother despite his own fears.

"At the time, my mum was in a nursing home. She was 86. I didn't want to (tell her) because she could do nothing for me but worry, so why give her that worry?

"She was living and suffering with advanced dementia. I was just grateful she could actually recognise me as being one of hers."

Nowadays, as well has having to deal with the common problems living with MND presents such as not being able to put on a jacket or hold a cup with two hands, a lack of knowledge of the disease leads to people misjudging Michael if they haven't met him before.

"When people meet me initially, if I don't have my cane with me they may think I'm drunk because I'm unsteady on my feet, my voice is slurring and slow so it's a natural assumption to make," Michael said.

"I have no problem or issue with the words used in the campaign if it wakes people up and makes them realise things aren't always as they seem.

"Every four days, someone dies of MND. I would say the majority of people in the world don't realise that MND is closer to them than they may realise.

"At the moment the IMNDA will be treating 360 people on an ongoing case, but I would believe there are others that have not declared to the association."

The IMNDA provides aid to patients like Michael through information, nursing services and providing items on a loan basis to help MND patients with everyday life.

With 86pc of its income generated through fundraising, the charity is encouraging people to set up their own 'Drink Tea' events to mark MND awareness month and raise money for the charity.

"We are so grateful to all the people who host tea mornings every year, because they help provide vital funds that go straight towards helping Michael and all our other patients," says Aisling Farrell, CEO of the IMNDA.

Michael continues to try and live a normal life, but MND forces him, to miss out on certain things, like going to rugby matches. A long-time referee of the sport and Munster rugby fan, he says he is unable to go to see his team anymore due to his condition, and it is the one thing he misses most.

"I can no longer manage steps because there is no rail to hold on to. I know there are disabled areas, and maybe in time I will convince myself I am worthy of one, but that hasn't happened yet."

The Irish Motor Neurone Disease Association is encouraging people to Drink Tea for MND during June. To organise an event, email or phone 1800 403 403 to receive your Supervalu sponsored tea pack.


Irish Independent

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