Gerardine won't let Motor Neurone Disease limit her enthusiasm for life

When Clonakilty woman Gerardine Hayes noticed a problem with her right foot last September, she never imagined it would result – just a few months later – in a formal diagnosis of MND, she tells Emma Connolly

A CLONAKILTY woman who was diagnosed with Motor Neurone Disease (MND) last year, says the condition isn’t stopping her living life to the full.

But coinciding with the Irish Motor Neurone Disease Association’s June awareness month, she is calling for greater investment in the area and more clinical trials.

Gerardine Hayes, 54, living in Castlefreke and originally from Ballingarry, county Limerick, recalls how this time last year she was at the American Society of Clinical Oncology conference in Chicago as part of her job as a disease area specialist for oncology medication for pharmaceutical company Novartis.

‘Then I climbed Mount Snowdon in Wales with my daughter Meadhbh. I’m a fiddle player and in July I took a camper van and travelled to the Joe Mooney traditional Irish music summer school in Leitrim, while in August I took a six-berth camper van to Skegness in the UK and on the way back attended Electric Picnic with some friends,’ she said.

She enjoyed a busy lifestyle and had a job that involved her travelling the entire country and routinely clocking up 70,000km a year. It was while in Dublin for work last September that she noticed a ‘deficit’ in her right foot.

A trip to the GP and some time off didn’t help and only saw her foot ‘drop’ further.

A formal diagnosis of the progressive neurological condition, MND, came that December which resulted in total disbelief and shock in Geraldine.

‘At that stage my health was not bad. But the day after St Stephen’s Day I became very unwell and was admitted to hospital for three weeks where I was treated for pneumonia. I came out using a walking frame so there was a rapid enough deterioration,’ she said.

Gerardine, married to farmer Francis, had to stop work but says her life is just as busy and fulfilled despite dealing with mobility issues.

The mum-of-one praised the support of the Irish Motor Neurone disease Association (IMNDA), which provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND nurses.

In order to provide these vital services, the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 82% of its income.

‘The IMNDA have been phenomenal and have given me the use of a wheelchair which has made a big difference to me. People do stare, but once you get over that, it’s fine,’ she said.

A keen fiddle player, she plays in O’Donovan’s Hotel in Clonakilty every week and also gets out and about to meet friends, attends a book club and swims with the Irish Wheelchair Association.

‘I’m proactive and do something every day. I could lie down and feel sorry for myself or get up and do something about it. I’ve great friends and there’s a great community in Clonakilty.’

She also praised the support of Novartis Oncology through which she’s availed of counselling which she said had been very helpful.

She also praises the  HSE multi disciplinary team, comprising a district nurse, speech therapist and occupational therapist, along with her home help.

However, Gerardine, who is being treated between Cork and Dublin, is critical of what she calls a lack of research into her condition, as well as available clinical trials.

‘It’s frustrating and frightening. After working in pharmaceuticals and seeing the investment in oncology and the difference it made, I had expectations. 

‘There’s no reason why there can’t be an MND national strategy like there is for oncology. 

‘I think the awareness month is a great idea. This is a heterogenous disease, meaning that it’s not the same for any two people. My doctors can’t tell me how it will progress for me, as there’s no known pathway for the condition. A lot of it is retrospective.’

The Motor Neurone Association, and Gerardine, are urging people to hold sponsored ‘Drink Tea for MND’  events this month. To get your tea pack email [email protected] or Freefone 1800 403 403. To make a donation text MND to 50300 and donate €2.

Meadhbh, an engineering student in CIT, raised €3,500 for IMNDA through a sponsored silence and along with nurses Margaret Allen and Joan O’Neill and Dr Aileen Flavin, all CUH, is organising a fundraising evening of music featuring De Dannan, Tom Jive and Two Time Polka in the Radisson Hotel Little Island on September 7th. Tickets available at O’Donovan’s Hotel, Clonakilty, email [email protected] or see FB page IMNDA Concert Fundraiser.