A daughter’s tale motor neurone disease

daughters tale motor neurone disease

A daughter’s tale of motor neurone disease

Lorraine Sheahan watched her father Michael’s ‘horrific’ transformation from a committed GAA man to someone trapped in his own failing body

ALondon Irish woman is undertaking a nationwide campaign to raise awareness for Motor Neurone Disease (MND) after the illness took her father’s life.

Lorraine Sheahan, from Southwark, is urging councils across the capital and beyond to adopt a set of guidelines to help those suffering from MND. Working alongside the Motor Neurone Disease Association she hopes to encourage greater consciousness of an illness she describes as “horrific”.

“From the day may dad was diagnosed, it was like a tornado had ripped through my family,” she said. “At a support meeting we were asked to write a short story about our experiences and I really struggled to put it into words. That was the only thing I could think of.

daughters tale motor neurone disease

“It doesn’t just destroy the person who’s got the disease, it hurts everybody close to them – it’s utterly horrific.”

Lorraine’s father, Michael, suffered from the bulbar strain of MND, the rarest and most aggressive form of the disease. He passed away just three months and 20 days after diagnosis and his rapid deterioration inspired her to get involved with the charity.

She decided to lobby her local council with the aim of getting them to adopt the MND Charter – essentially a booklet of advice on how to help sufferers and their loved ones.

Education

“We want to increase education of the disease, look at how to obtain benefits and get more people involved with volunteering and campaigning,” she explained. “The Charter is about bringing all the services together and making it a little bit easier for those affected to get help.”

There is no cure for MND and, given its nature, those who are diagnosed require a great deal of assistance. This, as Lorraine knows, can be terribly hard for those close to the sufferer to witness and, as a result, she sees the work of the association as vital.

“I chose to volunteer so I could help make life a little easier for other families affected by MND; the MND Charter is a step in the right direction as councils play a key role in providing care and support for people with MND at a local level,” she said.

daughters tale motor neurone disease

Her efforts have been documented in a short film, which follows her journey from contacting Southwark Council to making an emotional plea at a full council meeting. The council voted unanimously to adopt the Charter and Lorraine was full of praise for those in Southwark who have been so supportive since day one.

“They offered me a course of action and were with us every step of the way,” she said. “They helped bring the issue to a cross-party platform. Then they assisted with bringing a motion and organising the deputation.

“And you know that it’s not just for publicity, they are genuinely on board and that goes right up to the Southwark MPs.”

Cllr Richard Livingstone, cabinet member for adult care and social inclusion at Southwark Council, hopes that other bodies will follow their example.

He said: “I am very proud that Southwark Council has adopted the MND Charter and is working to support those with this devastating disease in our borough.

“Lorraine’s journey to get the council on board is truly inspirational and we would strongly encourage other councils to sign up to the Charter to ensure that families coping with MND have all the support they deserve.” The MND Association hopes that this campaign is another step in getting people to think more about MND.

Destructive

As people who have seen firsthand how destructive the disease can be, they want to help others in the future cope with the effects.

“It’s about getting the important things out there such as early diagnoses, access to treatment, a right to care and utilising the other services that are available,” Lorraine explained. “If everyone pulls in together then any gaps will be filled and there will be less time spent on the phone and more time acting.”

She noted how, as far as illnesses go, MND is still relatively new in terms of public knowledge. While people may have heard of the disease, its actual effects and the scientific breakdown are less well known. She added how in comparison to other diseases, it doesn’t get the same support and funding and therefore this Charter, and this short film, will hopefully be tools to bring in more volunteers and services.

“You have people like Stephen Hawking who is a great ambassador and has done so much to progress campaigns for MND.

“But what people don’t realise is that he is a very, very rare case; almost unheard of.

“The fact of the matter is, one third of sufferers will die within 12 months, half will die within two years and the remainder will die within two to five years.

“It’s devastating illness which can progress so rapidly. It’s like a torture chamber for everyone around and it rips through families,” she said. The Charter has been adopted by 23 councils so far and everyone at the MND Association is pushing for even more to follow suit. Its National Campaigns Manager, Raj Johal, explained how it couldn’t have done all it has without the tireless work of volunteers and this is why it needs all the help it can get.

“Lorraine is just one of many supporters who have successfully campaigned or are currently campaigning to get their local council to adopt the Charter. We would like to thank each and every one of them,” she said. “We are delighted that 23 councils have adopted the MND Charter so far. Their commitment to helping people with MND and their families through the hardest of times will make a positive difference to the MND community in their area. We urge more councils to get on board and adopt the MND Charter.”

It has been two years since Michael passed away and Lorraine explained how it doesn’t get any easier to come to terms with, particularly when she thinks of his condition in the weeks before he died. But by getting involved with the MND Association, campaigning hard and successfully with Southwark Council and encouraging more people to get involved through the short film, she hopes she has done something in his memory.

“The process was a little daunting but the MND Association was there every step of the way supporting me and the sense of achievement was amazing,” she said. “I know dad would have been very proud, this achievement means it has not been in vain.”

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