Put the kettle on! Limerick man seeks support for MND fundraiser
PUT the kettle on and raise a cup for the Irish Motor Neurone Association, urges Michael Clancy of Castletroy.
Michael, who was diagnosed with Motor Neurone Disease (MND) in 2016, is keen to get as many people as possible involved in this year’s virtual Drink Tea campaign which is running throughout the month of June.
“Our big fundraiser in any year is our Drink Tea campaign,” explains Michael, who was the face of the campaign in 2017. “Over 85% of what the association spends in the year would come from voluntary donations.”
Michael is one of over 400 people in Ireland living with MND and the association’s support and help are invaluable. “There is no government agency for assisting people with MND,” he points out. Specialised equipment, such as wheelchairs, stair lifts, beds and touch-screen computers for those who have lost the power of speech all have to be paid for and with little assistance from government, he explains.
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. It affects people’s quality of life, how they walk, talk, eat, drink and breathe.
In Michael’s case, it took almost two years of tests before he was finally diagnosed as having MND. But, he admits, he was having symptoms for about five years before that. “I didn’t know what it was. I was losing power in my hands, I was losing balance, my legs were getting weak and my speech was beginning to slur.”
There is no definitive test for MND, he says, which is a big issue. “The only way is to get to a specialist who deals with it on a regular basis who will be able to pick up the indicators.”
The actual diagnosis, when it came, still came as a shock. But Michael is more fortunate than others in that his variant of MND variant is the least aggressive. “MND won’t kill me. I will die from perceived natural causes but I will still have MND,”
There is, Michael adds, very little investment by pharmaceutical companies into finding a cure for MND or researching the symptoms because of the small numbers affected relative to other diseases globally.
His attitude however is to try to make the best of what has been visited on him. “I have no choice really only to get up and get on with life. Life is for living. I am not waiting to die.”
Fortunately, since his diagnosis, his symptoms haven’t gotten much worse, he explains. “I am in a stable phase at the moment. I don’t know how long that will last. I just try to get on.”
For all that, the man who once had his own franchised business, is restricted in what he can do. And he misses simple things like being able to walk without a stick or an aid.
“I can’t walk very far. I have to have level ground,” he says. And he describes his walking ability as middling going forward, very suspect on side to side and “goosed” in reverse.
But, with a week still left in June, there is still a chance for everyone to do their bit for MND sufferers and their families.
To organise your very own Drink Tea, all you have to do is visit imnda.ie and register your virtual tea event. For more information just email [email protected]
Invite friends and family to join you on Zoom or other online chat platforms. You can also ask friends to support you by ‘purchasing’ tea, coffee or some delicious goodies from our Thoughtful Treats Café! Or if you can’t host a tea event, you can make a donation.
Go to imnda.ie to find out how or just text MND to 50300 and donate €2.