MILO Hurley had no intention of walking up Carrauntoohil. The fund-raising walk was his wife Valerie’s baby.
She was determined to raise money for Irish Motor Neurone Disease Association, IMNDA.
Her husband, Michael, 43, known by everyone as Milo, had been diagnosed with Motor Neurone Disease (MND) three years previously.
“We could not cope without the support of IMNDA” said Valerie.
“They only get 13% government funding, the rest is all from fund- raising.”
“But then,” Milo, of Clonakilty, takes up the story, “I went up Mount Brandon with Valerie and Mick Cahalane from Tralee Mountain rescue and I was the first up out of the three of us!
“Mick said to me that I wasn’t afraid of anything. So I decided to give Carrauntoohil a go.”
As things turned out, Valerie was unable to do the walk last July, as she has three burst cervical discs and is awaiting surgery at the end of this month.
Over tea in the Hurley house, while the dog Coco sleeps on a chair, the Hurleys share their journey with MND so far.
It began with a knot in Milo’s shoulder that needed physio. Neither of them thought too much of it at the time, everyone gets knots in their neck and shoulders.
Then Milo noticed shakes in his arm and some muscle wasting and for some time disguised it quite well. Eventually, his physio advised him to see a doctor as he suspected something more was going on. A referral to Bantry Hospital ensued. Many tests later, a diagnosis of MND resulted.
“It wasn’t too surprising,” says Valerie.
“I’d been doing lots of research and consulting Dr Google”,
“And”, Milo interjects, “My father has Parkinson disease…”
“So we expected something like that”, Valerie finishes the sentence.
The couple have four sons, Dillon, 24, twins Shane and Colin, who are 22, and 13-year-old Callum. All the children are aware of the diagnosis and the older lads are a great help for physical tasks around the house.
“At first, Callum seemed to take it in his stride,” Valerie says. “Child mental health is so important. They look on the outside like they’re doing great but inside they’re sacred and frightened.
“Actually, it affects all our mental health.”
Earlier in the summer, Callum had realised the full extent of his father’s muscle wastag,e which had a devastating effect on him. Valerie noticed the signs and got him counselling.
“It’s nearly impossible to get child counselling,” she says.
“That’s another thing I want to raise awareness about, there’s just not enough counsellors for Child Mental Health. I had to wait four weeks for an appointment for Callum.”
Last year, Milo had to give up work. His employer, Michael McCarthy at Carberry Plastics Factory was brilliant. He knew the diagnosis and told Milo to just do as much as he could for as long as he could.
The family have recently moved house so that Milo has a dedicated bedroom and wet room on ground floor level.
He gets home help arranged through IMNDA.
Philp Reed assists with personal care. But he’s more than a home help, he’s almost one of the family. They go for walks together, their families know each other. He’s helping Milo’s brother assemble the furniture for the new house.
“He’s a trained chef,” Milo says, “and often cooks the dinner for the whole family. He and his son Steven came on the walk with us off their own bat. Steven carried my bag back down for me.”
Milo has very little use in his arms so required help and assistance to get up and down Ireland’s highest mountain. Mick Cahalane organised everything.
Three groups in total climbed the mountain, via three different ascents, all meeting at the Devil’s Ladder, and doing the final most difficult bit together.
Milo was kitted out with a hard hat, harnesses, and had guides before him and at his side. He laughs describing one of the men as being very tall.
On the way down, which was harder than the going up, this tall fellow went ahead of Milo so that if he lost his balance his fall would be broken.
“It was very tough going both ways,” Milo admits.
The walk, dubbed ‘Walk with Me’, raised €20,730. €11,000 went to IMNDA and the rest to a fund to make Milos’s life as easy as possible. The funds were presented to Marie Reavy, regional manager of IMNDA, at the GiGi Gin Bar in Clonakilty. On the night they were handed a further €480 raised for Kerry Mountain Rescue.
That night, Valerie took Milo unawares when she and Callum presented him with a cast of the sole of his boot.
The cast, made at life casting studios, by Maura O’Connell of Dunmanway captures in relief some of the grit caught in the cleats.
Valerie discovered Maura’s casting business while browsing Facebook and immediately thought of doing something to memorialise Milo’s achievement. Maura was on board from day one and came to the night of the surprise presentation.
Valerie and Milo stress the only reason they are speaking to The Echo is to raise awareness of MND. So few people know about it and most are afraid to talk or ask questions. Milo is aware of five people in the West Cork region with MND — and the Irish Motor Neurone Disease Association supports them all.
Technological innovations such as Sky Q are very helpful to Milo. Shortly, thanks to IMNDA, they will have Eye Gaze installed. This will allow Milo turn off and on lights by blinking his eyes. He will also have a tablet operated by this technology.
The couple are very positive and have wonderful family and friends whom they can’t thank enough.
They are also grateful to Kerry Mountain Rescue and to the IMNDA.
Milo gets out as often as possible and goes for a couple of pints with friends. He smiles as he concludes: “You just have to motor on.”
Humour in the face of adversity.
The Irish Motor Neuron Disease Association (IMNDA) is the only organisation providing care and support to people living with Motor Neurone Disease, their families and carers.
Their key services include home visits by their four MND nurses, financial assistance towards home help and the supply of specialised equipment on loan.
They also fund and promote research into the causes and treatments of MND.
For more see https://imnda.ie
Tel: 01 8730422 or Helpline: Freefone 1800 403 403
Email: email@example.com or firstname.lastname@example.org