'I hid the symptoms and I stuck my head in the sand' - Michael Clancy on how he ignored the signs of Motor Neuron disease
Michael Clancy said he is often mistaken as being drunk due to his slurred speech and balance, both symptoms of Motor Neuron disease.
The 59-year-old from Co. Limerick is the face of a new campaign to promote awareness of Motor Neuron Disease (MND), a progressive neurological condition that leads to weakness in movement and speech.
MND is often referred to as the 1,000-day disease as most people die within 1,000 days of being diagnosed.
Speaking to Independent.ie about when he first noticed signs of the disease, he mentioned how symptoms at first were 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 said.
"I also found it difficult climbing and coming down off of a ladder, and eventually stairs. My speech, I felt, 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.
"That would have went 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, those with MND can often be mistaken for being drunk.
The Irish Motor Neuron Disease Association have launched their latest awareness campaign, 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 the 360 people diagnosed with MND in Ireland.
"I was going in and out to neurologists in Limerick and Cork for about a year," Michael said.
"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."
Despite the disease and the way in which it has slowly progressed in him, it has just been 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 about his symptoms, despite his own fears.
"At the time, my Mum was in a nursing home. She was 86. I didn’t want her to know 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, Michael believes a lack of knowledge of the disease leads to people misjudging him 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," he said.
2At the moment the IMNDA will be treating 360 people on an ongoing case, but I would believe there are people that have not declared to the association. There are others that are not actually known."
The Irish Motor Neuron Disease Association provide aid to Michael and others through information, nursing services and providing items on a loan basis to help MND patients with everyday life.
With 86pc of their income generated through fundraising, the charity are encouraging people to set up their own ‘Drink Tea’ events to acknowledge 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," Aisling Farrell, IMNDA CEO said.
"So let’s all raise a cuppa and share the stories of over 360 families across Ireland affected by this disease."
Michael said he 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, Michael says he is unable to go to see his team anymore due to his condition, and it is the one thing he misses most.
Although his condition has progressed to the stage that affects his movement to the point where he can’t navigate his way around the stadium, he still refuses to sit in an assigned seat for the disabled because he believes others are in more need of one.
"The thing I miss most is going to a match in Thomond Park or the Aviva. 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."
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 email@example.com or Freefone 1800 403 403 to receive your Supervalu sponsored Tea pack.