The cruel road of motor neurone disease

PATRICK CARMODY could not walk his daughter up the aisle on her wedding day last year.

Instead his son pushed his wheelchair to the altar to wait for Maura.

“There wasn’t a sound in the church,” says his wife Betty, who is from Banard, Co Kerry. “I walked Maura up the aisle and handed her over to Patrick. It was a very hard occasion.”

It was at another family wedding six years ago that Betty first noticed something was wrong. “He couldn’t dance the first dance at our son’s wedding — his coordination was all over the place. I thought it was because he was out of practice. He was a fantastic dancer.”

Patrick, a window fitter, began to complain he was finding it difficult to lift heavy objects. “He was letting tools fall and stumbling when he was walking. We knew something was amiss.”

It took two years and a string of tests before the father of three was diagnosed with motor neurone disease, an incurable neurological disorder that affects voluntary muscle activity. There are an estimated 300 people living with MND in Ireland. “The news was heartbreaking — we couldn’t accept it,” says Betty whose brother died from the disease aged 57.

Now aged 56 and a patient at Kerry Cheshire in Killarney, Patrick’s health is slowly deteriorating. “All his functions are affected: his speech, his swallow — he only eats pureed foods. He is like a complete invalid now.”

Once the “life and soul of a party”, there are simple pleasures still to be enjoyed. “He likes music and the radio. You’ll see him tapping the good leg — his right — in time to the music. His mind is perfect.”

Betty visits Patrick twice a day — covering 50 miles — while holding down a job in a local supermarket. “I come in at 9.30am feed him and do what has to be done. I go home at 1.30pm and work from two to eight. Then I come in at 8.30pm and stay until 10.30pm.”

She is deeply grateful to her three adult children and wider family — “I don’t know where I’d be without them” — and to Kerry Friends of Motor Neurone, a voluntary organisation which supports people with the disease, along with their families and carers.

While acknowledging the “tough time” Patrick and the family are going through, Betty remains steadfast and philosophical: “For better or for worse,” she says. “Sometimes when you’ve got to do something you just do it.”

nKerry Friends of Motor Neurone is one of nine charities benefiting from this year’s Ring of Kerry Charity Cycle which takes place on Saturday, July 5. See www.kfmn.ie, phone [phone] or [e-mail]