Testimonials
Welcome to our Motor Neurone Disease sufferers Testimonials. Here you will find the story behind the sufferer as well as getting to know a bit about each person as well.
St Pio devotee Donal Enright claims a miracalous cure from Motor Neurone Disease.
Please take some time to read the article about this story on SouthernStar.ie – Full Article
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Patrick Carmody-Cruel road to 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.”
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Kerry has twice the national average cases of Motor Neurone DiseaseKerry has one of the highest incidence of Motor Neurone Disease in Ireland, with twice the number of people being diagnosed, compared to other counties.
That’s according to consultant neurologist at the Bon Secours Hospital in Tralee, Dr Helena Moore, who says there’s no explanation for this unusually high number of cases. Typically, at any one time in other counties, there’s an average of eight people with confirmed Motor Neurone Disease. But in Kerry, the figure at the moment is 16. Motor Neurone Disease, which gained worldwide publicity last summer through the Ice Bucket Challenge, typically strikes those aged 50 or over, but has been diagnosed in people as young as 17. Ms Moore says that while major research is currently being carried out in Ireland into the causes and treatments of the disease, there is currently no cure:
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New Technology for those living with Motor Neurone Disease.
“I honestly don’t think I would have survived this long without it because communication is the essence of life and it would literally break my heart if I was unable to speak to my family and friends.’’
Emma Miller Fitzpatrick, a 46-year-old mother of two, has motor neurone disease and is talking about her fascinating eye-controlled computer.
Since being diagnosed with the disease in 2010, she has become dependent on other people for everything — she lost the use of her arms, hands, legs, and speech as the condition progressed.
However, thanks to a Tobii eye gaze-enabling device — which works by tracking the user’s eye as it focuses on individual letters on the screen and then putting words and sentences together — she is able to communicate with her family, carers, friends, and the world at large.
Emma, who lives in Kinsale, Co Cork, with her husband Jonnie, and children Rowan, 9, and Alannah, 6, says she can’t imagine how anyone with the disease can manage without the device.
“It’s invaluable. Writing with my eyes, I stare at a letter and it comes up on the screen. Yes, it’s amazing. There might not be a cure for motor neurone disease yet, but a big high-five for those who created the eye-gaze,” she said.
After her speech went, she had been using a letter board, pointing out letters to indicate what she wanted to say. But she then reached a stage where could no longer point, after losing all arm and hand movement.
“My ‘eye-gaze’ [device] was sitting there for at least two months before I had the courage to use it. At a time when everything was changing in my body, I was desperately trying to cling on to ‘normality’. Change was an ugly word to me then. So I preferred to stick with my little blue letter board and point out the words.
“Then, when I was no longer able to point I started to use the eye-gaze. What seemed daunting at first turned out to be a lifeline. Like anything, it’s by practice you gain control, so I reckon after constant use over a couple of weeks I was a master.
“Soon I was able to communicate with all my family again which was fantastic.”
The device also gives Emma full access to the internet, as well as allowing her to run her home as best she can. Her blog, shapeshiftingemma.wordpress.com, has had more than 30,000 hits to date.
Emma believes it to be essential for people with motor neurone disease — which strikes the nerve cells that control the muscles resulting in degeneration and inability to do everyday things — and similar conditions
More than 300 people in Ireland have motor neurone disease and one person dies every five days from it.
The majority of patients are cared for in their homes, but there are only 12 Tobii eye-gaze devices in use countrywide at present, including four in Cork. The device costs around €13,000
Opinion: ‘Being stuck in a wheelchair without hands or speech is such a challenge as a mother’
Emma Fitzpatrick writes about how she doesn’t care for statistics – and focuses on what she CAN do, rather than what she used to be able to do.
EMMA FITZPATRICK WAS diagnosed with Motor Neurone Disease in 2010.
She is now 47 years old and lives in Kinsale with her husband Jonathan (Jonnie) and their two children Rowan (9) and Alannah (Kitty) who is six.
She started writing her blog – Shape Shifting Emma – using the Tobii Eye-Gaze computer in September 2012. Here are some of her recent blog entries and you can read and see more here.
Reflections on Christmas 2013
Posted on 6 January 2014
I was wondering about how I was doing this time last year and both Jonnie and Mum reassured me I appear stronger and more content. There is truth in their observations as I feel more able to cope and I recognise my limits with tiredness before they get out of hand and the whole house is affected. Yikes when that happens!
Jonnie did a fabulous job of the turkey and ham thanks to some YouTube advice from Gordon Ramsey early Christmas morning. Lucy [Emma’s sister] did fabulous veggies, Tomas made heavenly sherry trifle and Mum laid a beautiful table. The kids were delighted with their seemingly-endless amount of presents and the day flowed with the usual sense of hibernation that only this day brings.
Being stuck in a wheelchair without use of hands or speech is such a challenge as a mother.
A fellow sufferer who I’ve been in contact with described it as “raw grief”… Not being able to wrap a present – unwrap one for that matter. Not being able to share the joy spontaneously with the kids early Christmas morning is a bummer. However, without dwelling too much on what I can’t do, I am often spontaneously surprised by joy too.
Kitty, for the second year running, came into my room with a present for me to open after she opened her first one. Her thoughtfulness is something I‘m so proud of, she’s such a wonderful little girl.
We get to snuggle sometimes at night too if she sleeps downstairs. She puts her little hand in mine and I lift my leg to make way for hers. Then she serenades me with songs and one-sided chat.
How I wish my voice was alive for those extra special moments.
“I like myself”!
Posted on 14 February 2014
Recently I’ve been discovering lots of things. I hit a low patch when both big toes got infected and ingrown. When the doctor took one look she hurried to her bag to write a prescription for antibiotics. The thought of taking them was depressing as I knew how they wreak havoc on my system. Also, they have a habit of putting me off my food and the prospect of losing weight from my already thinning body was turning me right off.
So I spent the weekend with toes immersed in salt baths, taking homeopathy for infections and imagining healing energy was running through my feet. When the chiropodist came on the Monday she was happy enough with them and I didn’t have to take the antibiotics. Yay! What a great feeling of accomplishment I had!
Then other changes started happening with my body which worries me as I had a year or more of practically no change. I noticed after sitting in my wheelchair for a few hours or more, my bum and shoulder blades were getting sore. This pain on my pressure points was a result of having no ‘padding’ on my bones, I was told, but nobody seemed able to advise me on how to overcome this.
It was only when we suggested an alternative cushion to sit on that they came up with the goods. Now I’m in bum heaven but the shoulder blades are not!
Mum came up with a great idea of putting a layer of sheepskin between me and the chair and that has really helped. But the physio noticed when I was doing my bi-weekly stand that the shoulder blades had actually moved inwards through lack of use.
Well what d’ya know! Who would have thought these bastions to flight as I‘ve often thought of them, could be affected by the constant sitting. I felt my wings were well and truly clipped.
Wayne Dyer [a motivational speaker and self-help book author] says trust in your true nature. Kids too “know what to do” he tells us. If there’s one thing I’d like to pass on to mine, it would be to teach them to trust in their own nature; learning to listen to themselves in front of any decision big or small.
So I’ve been trying to remember when they ask me for more screen time or another biscuit to say, “What do you think is the right thing to do?” And despite an obvious cheeky answer they usually know when enough is enough.
When all that anxiety was rattling through my mind about the toes and shoulder blades, plus the concern about losing weight, I got a bit overly consumed by it.
It was only after a while – when I was less ‘consumed’ – that I realised I had actually missed myself!
I like myself and feeling joy would have always been a huge part of who I am.
Getting to like yourself isn’t easy but learning to trust in your decisions and listening to your inner nature helps. I thought about how long I’d been on that path recently when my cousin asked me about my thirties and what I’d discovered in those years.
I told her that I’d learnt to trust in my gut instincts. I knew when I met Jonnie in a popular bar in Cork on the eve of Valentines sixteen years ago, I’d discovered a gem! It felt right to be with him. So I went with that feeling.
Another important thing to me for the kids is their music education. This is something I can actually do, thanks to the wonders of modern technology. I can bring up rock and roll masters like the great Jimi Hendrix on my eye gaze, or the fantastic King of reggae Bob Marley.
Pop seems to have taken over the music world these days so I need them to know what’s what and who’s who! It’s fabulous for me when they sit on my lap and we listen to something together. Divine time! I heard somebody wise say recently, “Do what excites you.”
Music excites me, and I’m thrilled to be made aware of it again seeing as there’s so much I can’t actually do.
Pro Cal Junkie!
Posted on 19 May 2014
At the last meeting with the consultant at the hospital in Cork she was delighted with how well I’m doing. To be honest, it didn’t mean that much to me as I feel it’s just luck that I haven’t popped my clogs before now.
However, since diagnosis almost four years ago I’ve never really thought I would go to my grave prematurely.
Ignorance is sometimes bliss as I have to admit that I barely knew anything about this disease and preferred it to stay like that.
I only found out recently that 75% of people with MND die in the first three years.
On that awful day, I clung to the words: “It affects everybody in different ways”. And to this day, that sentence is my saving grace. I’ve heard of many people living with this condition for many years so I refuse to buy into the statistics.
I mentioned recently here that my shoulder blades etc. were getting sore after a while in the wheelchair. With this in mind, I asked the consultant if I could speak to the dietician while I was there. Lucky I did because she recommended bumping up my calorie intake via a product called Pro-Cal. Now I’m a Pro-Cal junkie! A month on from taking it regularly after meals – mixed with a smoothie – I no longer get pain.
I even remember voicing my concerns to Lucy prior to our recent Dublin trip about not being able to stay in my chair for long periods of time and how this would affect the visit. But it didn’t and you know how the holiday went? It was a great success! And I felt really comfortable in my chair.
After a recent course of antibiotics, my breathing was affected. The doctor recommended using an inhaler temporarily. I was extremely worried, more than ever. The doctor was taken aback by my concern.
“If my breathing goes,” I told Lucy, “I’m screwed.”
Four days of terror followed. Not even the doctors words of reassurance that it could be a post chest infection blip helped. I honestly thought I was on my way out. I was terrified. In the past four years, I have not been scared of dying but now I was. I found myself longing for the time before the infection when everything was OK and manageable. I didn’t realise how lucky I was before.
Thich Nhat Hahn, a Buddhist poet, talks about the “non-toothache” – that is, the remembering of how good it feels NOT to have that horrendous pain in your mouth.
Only when everything passed a few days later could I experience the non-toothache again.
A major coughing episode seemed to loosen and clear the airways, leaving me free to get over my panic and continue getting on with my life.
I’ve been feeling so well since then with a “no toothache” attitude to life.
The Irish Motor Neurone Disease Association (IMNDA) is the primary support organisation for people living with MND, their family and carers. The vast majority of its income comes from fundraising and the generosity of the public.
On Saturday 28 June, The June Ball takes place in the DoubleTree by Hilton Hotel, Burlington Road, Dublin 4 to raise much-needed funds for the charity. Drinks, food, free wine, games, bands, DJs, a raffle for Garth Brooks tickets and more
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In the Face of A.L.S., Simon Fitzmaurice Finds His Fire Inside
Continue reading the main storyPhoto
The writer and director Simon Fitzmaurice at his studio in Ireland. CreditPaulo Nunes dos Santos for The New York Times
After his short film screened at the Sundance Film Festival in 2008, a euphoric Simon Fitzmaurice was walking the snowy streets of Park City, Utah, when his foot began to hurt. Back home in Ireland that summer, by then dealing with a pronounced limp, he received a shattering diagnosis: motor neuron disease, or M.N.D. (more commonly known in the United States as A.L.S., or Lou Gehrig’s Disease), a neurological disorder that causes increasing muscle weakness and eventual paralysis and is, in most cases, fatal. The doctor gave Mr. Fitzmaurice, then 33, three or four years to live.
That might have been the end of any normal existence. But Mr. Fitzmaurice, by his own measure a “bit of a stubborn bastard,” was determined to leave his wife, Ruth, and their two young sons — with a third on the way — a legacy other than self-pity.
The result is Mr. Fitzmaurice’s first feature film, and perhaps his salvation — “My Name Is Emily.” The movie, which opened in limited release in the United States on Feb. 17, stars Evanna Lynch, the airy Luna Lovegood of “Harry Potter” fame, as a teenage outlier in both her Dublin foster home and high school who goes on the lam with her only friend (George Webster) to free her father (Michael Smiley) from a mental hospital. The film — with gorgeous scenes of Ms. Lynch plunged, nymphlike, into a cerulean sea or riding shotgun through the emerald countryside in a canary-yellow vintage Renault — won for best cinematography when it debuted at the Galway Film Fleadh in 2015.
“I am not trying to prove anything,” Mr. Fitzmaurice wrote in an email, before quickly reconsidering. “Actually, I am trying to prove something. I remember thinking, ‘I must do this to show my children to never give up.’”
Mr. Fitzmaurice was writing with his hands when he began the script for “My Name Is Emily.” By the time he was finished, he was writing with his eyes.
Now 42, he has lost mobility in his limbs and can no longer speak, swallow or breathe without artificial help, and he uses a Tobii I-15 eye-gaze computer to communicate. A tracking device captures the movement of Mr. Fitzmaurice’s eyes as they rest on a letter or phrase on a smartphone-like keyboard, causing the characters to appear on a screen. When his thoughts are complete, he focuses on a “speak” button, and a computerized voice vocalizes his words.
He used the computer to direct “Emily” for six weeks in the fall of 2014, not far from his home in Greystones, County Wicklow, just south of Dublin. By then, the producers Lesley McKimm and Kathryn Kennedy had signed on, lured by what Ms. Kennedy called “the most beautifully written script I’d read in a very long time.” And the film’s 2 million euro (about $2.67 million in 2014) budget had been provided by the Irish Film Board and the Broadcasting Authority of Ireland, among others.
Another 120,000 euros (at the time, nearly $161,000) — for support to Mr. Fitzmaurice — was raised through a crowdfunding campaign, buoyed by celebrity friends including Alan Rickman, Sam Neill and Colin Farrell, who narrated “It’s Not Yet Dark,” a new documentary based on Mr. Fitzmaurice’s best-selling 2014 autobiography.
But things he’d taken for granted as an able-bodied director — standing on set during shooting, quickly conveying changes to actors — were now formidable obstacles. Despite his computer proficiency, there is nonetheless a short delay while he types his thoughts — a pause that can feel like an eternity to those waiting for his instructions. In preparation, he created storyboards of each shot so that cast and crew members knew what was expected in each moment.
And because his computer doesn’t work in direct sunlight, Mr. Fitzmaurice had to direct the film’s many outdoor scenes from inside a dark tent. From dawn to dusk and sometimes throughout the night, he was there for every moment of the creative process, with his support director, Liz Gill, at his side.
“Liz was my arms and legs,” he said. “We developed a shorthand; with a wink she would know whether I would like a take, whether to move on.”
Working with people had originally drawn Mr. Fitzmaurice, a poet in his boisterous youth, to filmmaking.
“I’m not made to write in a garret alone,” he wrote. “I was good with people before M.N.D., able to disarm them, put them at ease. But with all my tools gone — body language, touch, varying tones of voice, a few stories, a relaxing joke, and nothing left but my thoughts appearing slowly on a screen — I felt that the greatest challenge would be to see if this changed body would still allow me to direct actors.”
Before shooting began, he spent long evenings emailing with Ms. Lynch, helping to develop her character and preparing her for the challenges ahead.
“You don’t realize until you speak with him how unnatural it feels to sit in silence with someone, especially someone you don’t know,” she said. “The silence brings up all your insecurities and vulnerabilities. I would say all what I’m thinking, but Simon can’t smile and can’t nod. It’s really an exercise in trust and collaboration, and not looking to the director for affirmation.
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Man Who Proposed to Girlfriend Two Days After ALS Diagnosis Fights for Love 6 Years Later: ‘She Stuck It Out with Me’
It didn’t take long for Hope Dezember to fall for her now-husband, Steve.
“He charmed my socks off on our first date. He had candles lit, he had Frank Sinatra playing and he cooked crab legs,” she tells PEOPLE.
But there was something else about that night that stood out as the couple from Johns Creek, Georgia, got to know each other. Steve Dezember’s hands trembled and she watched him struggle to open a bottle.
“He’d been to the doctor seven times at that point, but he didn’t know what was going on,” Hope recalls.
In August 2011, four months after their first date, doctors figured out what was wrong. The former engineering recruiter, then 28, was diagnosed with ALS, commonly known as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Two days later, the couple went for a walk and Steve proposed. He had already bought a ring but told Hope he understood if she wasn’t up for the road ahead.
“He said, ‘You don’t have to stay with me, you heard what the doctor said.’ I said, ‘I’m not going anywhere,’ ” Hope recalls.
Two months later, in October 2011, the couple was married. Steve wanted to make sure he could walk down the aisle.
“It’s pretty wild, it’s an interesting thing when you get married and you don’t know how long you’re going to get with your husband,” Hope says.
By January of the next year, Steve was falling a lot and by 2013, doctors had to insert a tube to help him breathe. Hope hasn’t heard her husband’s voice since then. At one point, he was down to just 67 pounds and Hope had to watch as he came close to death — twice.
“When I look at him, he’s still just as handsome. He’s still cute. He doesn’t shave his beard anymore. He’s hairy, and I like that,” she says, laughing.
The couple’s love story is so powerful, they worked with a documentary crew to create a film that followed them for two years after Steve’s diagnosis. It debuted in 2014 and is currently available on iTunes and Amazon.
“I am really grateful to have that,” says Hope. “Back then I didn’t realize the value, how much I would watch the videos. I’ve known him longer now sick and without a voice, it’s a bit if a head game.”
Hope, 32, left her job as a mental health therapist to care for Steve, now 34, full time. This past year has been a tough one – until last month, Steve only got out of bed to go to the hospital.
The medical team has said there isn’t much more they can do for him, but Hope is a voracious researcher, constantly looking for ways to help her husband.
“The doctors make it sound very bleak, but we don’t buy into that,” she says. “We still believe there is plenty of hope.”
Steve spoke with PEOPLE using a computer, saying: “It’s not easy to know you’re on the path of being not able to move. It’s really a lot to deal with but I feel rather optimistic for having the prognosis I have. My days are spent watching the squirrels and when I have energy I watch TV and work the stock market. Hope is an angel, I am so thankful she has stuck it out with me every single day.”
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Leading Irish Neurologist receives International award for Motor Neurone Disease research
There it was my life sentence – Sharon Friel
Motor Neurone Disease (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 the muscles, which leads to weakness and wasting.
MND can affect how you walk, talk, eat, drink and breathe.
Last year, social media was taken over by the #IceBucket Challenge, but how many people really understood the effects of people living with this condition
Dublin mum Sharon Friel opened up to us about her battle with MND, the shock of diagnosis and how she copes with the help of family, friends and her little 6-year old boy Senan.
Sharon, can you tell us how you were diagnosed with MND? What symptoms did you spot?
Back in September 2011 my left calf muscle started to feel strained. I thought I was wearing shoes that were too high so wasn’t really over concerned. I attended a Physiotherapist who gave me different exercises but my leg continued to dis-improve.
In January 2012 I went to my GP, and at this stage I couldn’t stand up on my left tiptoe, but again I was not too worried. My very astute G.P, Doctor Antonia Lehane referred me to a neurologist straight away. That was when I first thought, ‘oh God something is wrong’. I then went through a series of tests with the neurologist such as a brain scan, spine scan, and lumber puncture. All the test results came back clear so I began worrying a little less even though I had now developed a limp. Strangely enough for me I didn’t research my symptoms on line; maybe I knew deep down it wasn’t good.
At the last appointment with the neurologist he informed us he had to refer me on to Professor Hardiman for a second opinion and then for the first time ever I heard my name and motor neurone disease in the same context. He told me “we couldn’t rule out Motor Neurone Disease”. And there it was, my death sentence, handed to me on a sunny July day in Dublin city.
Two weeks later I met Professor Hardiman and her team and it was all confirmed, the slight limp was indeed the beginning of the end.
Were you aware of the condition before your diagnosis?
Yes I was aware of the disease, but always associated it with older men. I’d only ever heard of famous men such as Colm Murray, Stephen Hawking, Lou Gehrig etc.
I also knew it was fatal.
What advice and support was available to you from your time of diagnosis?
Professor Hardiman and her team kicked into action straight away on the day I was diagnosed. The IMNDA immediately provided me with a counsellor to provide emotional support. My counsellor had previous experience with MND patients so was well equipped for my shock, fear and fragility.
With most types of MND the changes to your body happen gradually, nothing happens suddenly, you don’t just lose the ability to walk or talk overnight. You have time to somewhat adjust and prepare to the changes going on. My MND has a definite pace, I feel every two weeks a change happens, another thing goes, another loss. MND teaches you to live with a constant stream of losses, you are constantly grieving your old self, your old abilities, your independence.
At every stage of the way the IMNDA in particular & the HSE have been there providing me with the support and equipment I’ve needed.
Was it a big shock to your family? How does it affect them on a daily basis?
Yes it was a tremendous shock to us all. My symptoms, although clearly progressive, were relatively minor at the time I received my diagnosis. This big scary disease now owned me yet I felt and appeared so normal and healthy at that time.
My husband is my rock, he does everything for us. As well as working full time he is effectively a single dad, a carer and an Irish mammy fussing over our 6 year old son & myself.
Mum and Dad love to travel but have not left the country since my diagnosis. They are with me most days – helping out, driving me to appointments & just supporting me to help make life easier.
How did you start preparing for the effects of MND in your home and personal life?
With the support and advice of my Occupation Therapist Colette we started making changes when I became unsteady on my feet. Luckily my father and husband are both very handy so they were able to make all the changes around the house.
What are your biggest daily challenges of dealing with MND?
Getting out of bed in the morning and everything else that follows through the course of a normal day. I need assistance to do everything. I am fully dependent on others and have lost all independence.
Luckily, I have a fantastic team of carers who enable me to lead an independent life, they are my A Team. My morning time carers Jackie and Patricia come in all happy and get me up, showered, dressed and ready for the world. Then at night June and Caroline come in for a song and maybe a dance before they whisk me off in the hoist and put me to bed! I get on great with my carers – I’m blessed to have such lovely people around me who truly do care. My son loves all the carers, he gives them all a kiss and hug goodnight.
Tell us about the sponsored silence campaign for MND this February?
Between 80-95% of people living with MND will experience some loss of speech before they die. This February the IMNDA asking people to take on a sponsored silence to experience what it would be like to not be able to communicate. Stay silent for 30 minutes at work, school or even at home alone. During this time of reflection think ‘if today were the last day you could use your voice, what would you say?’ Share your last words on Facebook and twitter (@IMNDA) by using #Voice4MND.
All you have to do is pick a day, time and location where you will take on your sponsored silence. Sponsor cards are available from our office, just email fundraising@imnda.ie or you can text MND to 50300 to donate €2 (100% of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278), then tell us what would be the last thing you would say if you knew you would lose your voice #Voice4MND. Nominate friends and families to join you.
Has there been any positive things you’ve taken from this experience?
Despite all the horrible things MND brings it has made me feel loved. I’m much closer to my family and friends, we tell each other constantly how much we mean to each other and that we love each other.
I appreciate everything more; my pace of life has slowed down so I do have the opportunity to live in the moment more.
How do you stay positive?
I have two choices, live with MND or die from MND. I have made a conscience decision to choose the former. When you have a child you become selfless. I think having a young son has helped me focus on positivity – ultimately I want to protect him.
Naturally I do have dark moments, but I just go with it and let the tears flow. I have a wonderful family and great friends so surrounding myself with positive and supportive people keeps me going.
What advice would you give to someone who has been recently diagnosed?
Take one day at a time, don’t go researching the disease and worrying about future changes. Unfortunately it’s beyond your control. You have to live in the moment and enjoy the little things in life.
Support is available either through the IMNDA or Professor Hardiman and her team at Beaumont Hospital. Yes I’ve had to fight hard to hold on to my Medical Card, but the service I receive from my community health care team is second to none.
What’s the one thing you wish people knew about living a life dealing with MND?
Now that I’m physically disabled I experience life and encounters with people from an alternative angle. I’ve had to deal with many a peculiar reaction to me rolling up in my wheelchair! I wish people would never ever underestimate a person with a disability – appearances can be deceptive
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Author Archives: Shape Shifting Emma
Something You Might Like to Know
Hi
I want to update all of you followers of Emma’s blog. Physically she has left us but she lives on in our hearts and minds in many different ways. This blog lives on, for example, as a testament to her spirit. Recently I was informed of something regarding Emma’s writing that, I think, might be very relevant to all of you who have accessed shapeshiftingemma and have scrolled down through these pages. It turns out that the features editor of the Evening Echo (a very popular local paper for those who don’t know it) was intending to ask her to write a regular column. To me this is a great accolade to her work. She began her blog in torturous conditions piecing together the letters of every word with the movement of her eyes. All she had was a hunger to write. Little by little her writing gained recognition. This developed to the point where she had many thousands of followers, where newspapers featured her work in their pages and where a 5 part radio program was produced based on the words of her blog. Thus to arrive at a place where an editor wanted her to write a regular column in his newspaper was an incredible achievement. Were she to have known this she could have been so proud of what she had done. For this reason I am letting you, the readers, know about it. You have valued her writing and appreciated her words and would know what this recognition would mean to her. Let’s all savour its significance in Emma’s (ongoing!) tale.
Kind regards to you…
Jonnie
By the way here is a link to the radio program that was made by Jo Pickup:
https://3c-lxa.mail.com/mail/client/dereferrer?redirectUrl=http%3A%2F%2Fwww.ucc.ie%2Fen%2F983fm%2Fdocumentaries%2Fshapeshiftingemma
And here is a link to an article in the Evening Echo promoting that program:
http://www.eveningecho.ie/cork-news/brave-emmas-words-live-on-through-inspirational-documentary/
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A Brief Reminder
Very Sad News
I am so sorry to have to let you all know that lovely, amazing, beautiful Emma lost her battle with MND last Friday morning, the 27th of February. We are all grieving her loss here and can’t believe that she has left us.
Her funeral arrangements are on RIP.ie
Sincere thanks to all who have followed her blog. I know that it has been an inspiration to so many.
Kind regards
Jonnie
Interesting and hopeful discussion on MND from recent rte radio program
Press release
IMNDA came up with great idea of doing a sponsored silence in the month of February. Anyone who is interested can do it.
Imagine not being able to say ‘I Love You’ this Valentine’s Day
Emma Can’t
February is the month of love where couples from across the world openly celebrate their affection for each other. But imagine not being able to say ‘I Love You’ this Valentine’s Day. Most people with Motor Neurone Disease (MND) can’t. Between 80-95% of people living with MND will experience some loss of speech before they die.
Emma Fitzpatrick is 47 years old from Kinsale, Co Cork. She was diagnosed with MND in 2010. Since her diagnosis, Emma can no longer walk and is confined to a wheelchair. She can no longer speak and communicates mainly with theuse of Eyegaze technology.
“This most cruel disease has taken with it the use of my upper and lower limbs. It has also taken my voice,” Emma Fitzpatrick. Emma met her husband Jonnie on the eve of Valentine’s Day 16 years ago. This year she will not be able to say the words ‘I love you’ to him or her two children, Kitty and Rowan.
This February we’re asking you to take on a sponsored silence to experience what it would be like to not be able to speak. Stay silent for 30 minutes at work, school or even at home alone. During this time of reflection think ‘if today were the last day you could use your voice, what would you say?’Share your last words with us on Facebook and twitter (@IMNDA) by using #Voice4MND.
All you have to do is pick a day, time and location where you will take on your sponsored silence. Sponsor cards are available from our office, just email fundraising@imnda.ie or you can text MND to 50300 to donate €2 (100% of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278), then tell us what would be the last thing you would say if you knew you would lose your voice #Voice4MND.
Nominate friends and families to join you. Sometimes silence can speak volumes. Take on our challenge today. Don’t let Emma suffer in silence; don’t let her live without a voice.
The IMNDA 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 Nurse. 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 86% of its income.
ENDS
For more information please contact Derbhla Wynne or Maeve Leahy
(01) 873 0422 email pr@imnda.ie
Notes to Editor:
Motor Neurone Disease (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. MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently over 320 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.
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Joost Van der Westhuizen, South Africa rugby legend, dies aged 45 after seven-year battle with motor neurone disease
Rugby was united in mourning on Monday after Joost van der Westhuizen, an icon of South Africa’s World Cup victory in 1995, finally lost his brave fight against motor neurone disease aged 45.
When the former South Africa scrum half and captain was diagnosed with the MND in 2011, he was given just a couple of years to live. Typical of the man, Van der Westhuizen defied the doctors’ predictions to hold on for six years, all the while raising funds for fellow suffers of this vicious disease through his charity, the J9 Foundation.
He was admitted an intensive care unit at a Johannesburg hospital on Friday and yesterday morning J9 confirmed in a statement that he had passed away
Van der Westhuizen won 89 caps for the Springboks scoring scored an astonishing 38 tries, a record that wing Bryan Habana only recently surpassed.
His defining contribution came in the 1995 World Cup final against New Zealand in shackling the previously unstoppable All Black wing Jonah Lomu in South Africa’s 15-12 victory.
At 6ft 1in, Van Der Westhuizen redefined scrum half play with his physicality often acting as an auxiliary forward. Only Gareth Edwards rivals him in the pantheon of great scrum halves. England coach Eddie Jones was among many who paid tribute to him yesterday.
“He was a great ball runner, had a great pass and a great kicking game,” Jones said. “He was a really aggressive defender and a real leader of the team. He was not always the captain of the side but he led the team well and is certainly a great loss for his family and South Africa rugby.”
If his star was born against Lomu, another who has departed tragically young, then his legend was sealed in selfless and defiant approach with which he tackled MND, a rare muscle-wasting condition that effectively imprisons a person within their own body.
Mark Andrews who played alongside Van der Westhuizen in in the 1995 World Cup final told The Daily Telegraph that he simply refused to accept defeat in sickness as well as health. “He epitomised what being a Springbok is all about,” Andrews said.
“He was a competitor until the end. There was nothing that stood in his way of being a champion. He never gave up, he didn’t know how to. He treated his illness in the same way. They gave him a couple of years to live and six years later he has only just succumbed.
“There’s a fine line between arrogance and confidence and that was one that he walked for most of his career. But when he got this illness he became the most humble guy I have ever known. He accepted this is it but resolved be the most positive person he could be and touch as many lives as he possibly could in the time that he had left. And that’s exactly what he did.”
We wish to express our sincere condolences to the family of Joost Van Der Westhuizen.
An inspiration to us all in so many ways. #RIPJoost
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Scientists discover new gene involved in Motor Neurone Disease
Irish scientists from Trinity involved in ground breaking international study which may help with the development of new treatments for MND.
28 October 2014
Gene Discovery – Trinity College.
Trinity College-based scientists have discovered 50 distinct genetic clusters in Ireland and Britain
Former Cathaoirleach of Limerick County Council dies of Motor Neurone Disease
Mary Harty served as Cathaoirleach from 2011 to 2012.
A FORMER CATHAOIRLEACH of Limerick County Council has died of Motor Neurone Disease.
Mary Harty was a Fine Gael councillor for the Castleconnell area who became just the third woman to be elected first citizen of the county in 2011. She was diagnosed with the disease in 2012 while still Cathaoirleach.
The current Cathaoirleach, councillor Kevin Sheahan, said that Harty was a “warm and engaging person”.
“Sadly, we lost Mary far too young. It is so poignant that she lost her battle against Motor Neuron Disease this week when there’s a huge campaign underway raise awareness of this terrible disease.
Despite her illness, Mary still turned up to all Council meetings right to the very end. Fittingly the last historic meeting of the Castleconnell electoral area was held in Nicker in April to honour her for her huge contribution to local life.
“I would like to offer my sincere sympathies to her family on behalf of myself and the elected members, management and staff of Limerick City and County Council.
“We will hold a special Council meeting in the coming days to allow elected members to pay tribute to Mary. She is leaving behind a great legacy and will be sadly missed by all who knew her.”
The Limerick Leader reports that Harty had organised an ice bucket challenge in her home last week in order to raise funds for the disease
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Fine Gael T.D. Nicky McFadden vows to continue working after Motor Neurone Disease diagnosis
Longford-Westmeath TD Nicky McFadden was diagnosed with the disease last week.
A FINE GAEL TD has vowed to continue serving her constituents after being diagnosed with Motor Neurone disease.
Nicky McFadden, a TD for Longford-Westmeath, today revealed she had been diagnosed with the condition late last week, after months of medical testing.
“About eight months ago, I noticed having to slow down my speech in order to avoid slurring my words,” McFadden said in a statement today, saying she had been formally diagnosed last Thursday by Prof Orla Hardiman of Beaumont Hospital.
“When I became symptomatic, I initially thought it was something to do with my vocal cords. But each medical test proved negative and it was a very frustrating time. The possibility of Motor Neurone Disease only emerged in the last fortnight.
While 75 per cent of people with Motor Neurone Disease first present with muscle weakness in the arms and legs, the onset of my condition is subtle, and has only affected my speech so far.I feel absolutely fine, and I completed a ten mile walk for the ICA just three weeks ago.
McFadden said that the slowing of her speech was the only symptom at present, and she was determined to “maintain my workload as energetically as I have up until now”.
“My offices in Mullingar and Athlone have never been busier, and, as far as I’m concerned, it is business as usual representing the people of Longford and Westmeath in Dáil Eireann.”
Taoiseach Enda Kenny expressed his admiration at McFadden’s stance, saying he had “no doubt that Nicky will continue her work with her customary conviction and energy”.
McFadden, 49, was first elected as a councillor in 1999 and entered the Oireachtas as a senator on the Administrative Panel in 2007. She was elected a TD in February 2011
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Colm Murray’s daughter speaks about heartbreaking impact of Motor Neurone Disease
Friday, 5th September, 2014 11:20am
The late Colm Murray
A native of Moate, Colm died on July 30 last year after battling the debilitating illness for more than three years.
His daughter Kate spoke poignantly about her Dad on Today FM’s Ray D’Arcy show earlier this week.
She compared the moment when she was told about her father’s terminal condition – on Good Friday in 2010 – with the ice bucket challenge itself.
“It was like a bucket of cold ice (being poured on you). You feel shocked and as if you’re drowning, in a sense. That’s the only way I can describe it.”
Kate said one of the hardest moments during the illness was when Colm lost his famous voice.
“That was really, really tough. When you were able to hear the deterioration of his voice that was sad, but when it came to the point that he couldn’t speak at all that was really heartbreaking,” said Kate.
“The time from when he was diagnosed to when he died was an absolutely awful, really terrible, time… but there were also some really lovely moments that we had.
“If there’s a positive to everything, (then it’s that) it really tied our family together.”
She also praised the work done by the Irish Motor Neurone Disease Association (IMNDA), which said it has received €1.4 million in donations as a result of ice bucket challenges on social media.
“The IMNDA are great. They supplied us and they supply families of people with MND with things like power wheelchairs, hoists – things I never even knew existed, that would cost thousands, and that nobody would be able to afford.
“When you get this diagnosis you don’t know what to do or who to turn to but they are always there to swoop in and show you in the right direction or listen to you,” she commented.
TRIBUTES HAVE BEEN pouring in for RTÉ sports reporter Colm Murray who passed away at the age of 61 on Monday.
The Westmeath native had been battling with motor neurone disease for the past three years.
To help raise awareness of the debilitative disease, Murray took part in many fund-raising opportunities by the Irish Motor Neurone Disease Association (IMNDA).
“Colm was a great advocate for the MND community and created enormous awareness around this devastating condition. His courageous battle gave strength to others living with Motor Neurone Disease,” said Aisling Farrell, CEO IMNDA
MND is a progressive neurological condition that leaves people unable to do the everyday things that the rest of us take for granted. Walking, talking and swallowing may become virtually impossible. MND strikes people of all ages and there is no cure.
There are over 300 people with MND in Ireland.
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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 fundraising@imnda.ie 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 concertfundraiser0@gmail.com or see FB page IMNDA Concert Fundraiser.
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Famous People Who Died of Motor Neuron Disease
List of famous people who died of motor neuron disease, listed alphabetically with photos when available. This list of celebrities who died from motor neuron disease includes information like the victim’s hometown and other biographical information when available. Unfortunately many famous people’s lives have been cut short because of motor neuron disease, including actors, musicians and athletes.
List of victims of motor neuron diseases features Mao Zedong, Lou Gehrig and more.
This list answers the questions, “Which celebrities have died from motor neuron disease?” and “Which famous people died due to motor neuron disease?”
These notable motor neuron disease deaths include modern and past famous men and women, from politicians to religious leaders to writers. Everyone on this list has has motor neuron disease as a cause of death somewhere in their public records, even if it was just one contributing factor for their death.
To See More, Please Follow to Link: Famous People Who Died of Motor Neuron Disease
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DEVASTATING DIAGNOSIS
Limerick man’s body so ravaged by Motor Neurone Disease he won’t be able to say ‘I love you’ to wife on Valentine’s Day
This February Paul Carroll and the Irish Motor Neurone Disease Association (IMNDA) are urging people to give up their voices to experience what life is like for those with MND
One year after diagnosis, the disease has gradually robbed his ability to do the everyday things which most of us take for granted, like tell his wife of 38 years that he loves her.
Paul said: “Having been a keen walker I now use a stroller to move around and a stair lift to get upstairs. I have some difficulty swallowing which limits my choice of foods. The most radical change for me however is a severe deterioration in my speech.”
This February Paul and the Irish Motor Neurone Disease Association (IMNDA) are urging people to give up their voices to experience what life is like for those with MND.
There are currently over 370 people living with MND in Ireland. It is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.
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‘I believe a lot of things are down to mind over matter’
Having lived through the two- to five-year MND life expectancy period, ‘my survival instincts kicked in’
I left school at the age of 13. I have always been involved in physical work such as construction, bartending, farm labouring and driving. But in 1976 I noticed some strange symptoms – the first was the fact that when I stretched out my right hand, one finger dropped down and seemed unable to resist the pull of gravity – I also had weakness in my bicep.
Initially, I tried to ignore it but things started to get worse so I went to see my doctor after about six months. He did a few tests and about six weeks later, I was told I had motor neurone disease (MND).
I hadn’t brought anyone with me to the doctor’s clinic and initially the diagnosis had no immediate effect as this was 1977 and the words motor neurone disease were not something you heard very often.
Life expectancy
My instincts told me that it might not be good but I didn’t probe at the time of diagnosis and the word terminal was never used.
But on my next visit, I queried the neurologist and received the shocking words: “Yes, it is terminal and life expectancy is between two and five years, although you are a very healthy, strong person and I would be surprised if you did not get longer than that.” Those were the actual words of my neurologist.
I felt really terrible then and didn’t know what to do or what was going to happen to me. But slowly it became clear that I would not be able to live my life like I had before. Bit by bit I got worse.
I had to give up my occupation as a mechanical machine driver and later a car driver. I knocked everything over when eating. I was ashamed, embarrassed, frustrated, angry, bitter and infuriated as I slowly became aware of an active, alert brain imprisoned in a useless body as I lost the function of my arms and hands.
But after successfully living through the prognostic time, my survival instincts kicked in and following a pilgrimage to Lourdes I felt empowered with a power greater than myself.
I honestly believed that acceptance of my diagnosis was the answer.
So I started to accept my condition. I concentrated on the abilities that I had – and realised that they were many; for example – I can still walk, talk, see, hear, taste, touch and smell. I can laugh; I can smile to brighten up someone’s day. I can love, I can write, I can enjoy fun, I can eat and I can drink – even Guinness through a straw tastes just the same. I discovered that my list of positive abilities is endless.
I had the house adapted to suit my needs with some adjustments to the bathroom and an automatic electric bed. And although my wife Bridgie is now in a nursing home with rheumatoid arthritis and my four daughters live abroad, my two sons Andrew and Raymond live nearby and I have a full-time carer and home help, so I am well able to get by.
Faith in God
At my initial diagnosis, I don’t think anyone thought I would be the longest MND survivor in Ireland but I think I achieved that accolade with a combination of faith in God, many trips to Lourdes, the support of my family and my own positive outlook.
Essentially, I believe a lot of things are down to mind over matter and I have reached the ripe old age of 80, by always trying to think positively and concentrating on my remaining abilities, not the ones I have lost.
We all have abilities that we never knew we had – and technology is improving every day and has eliminated many disabilities.
Most people would have said that writing the book was an impossibility for someone with a disability like mine. What could I produce with a keyboard that I could not use or with hands and arms which were rendered useless?
Yet with modern technology and voice-recognition software, I eventually got words up on the screen.
I made thousands of mistakes and could actually laugh at my inadequacies. But I got there in the end.
I take great inspiration from other disabled people, for example: our Paralympic team and that little teenage girl from Cork, Joanne O’Riordan – without arms or legs – addressing the United Nations and holding the delegates in awe with her speech.
Positive thinking
I believe if you want to find initiative, courage, determination or resilience in a person – then look for someone with a disability. And my advice to anyone who has just received a diagnosis like mine, think positively and accept the way you are – always remember that life is terminal for everyone.”
Against The Odds is available from bookshops, online from imnda.ieand at londubh.ie. Cost €14.99. All royalties from the sale of the book will go to the IMNDA, which provides emotional and practical support to those who have been diagnosed with motor neurone disease (MND) and their families. imnda.ie
Living with MND: surviving to write the tale
Andy McGovern has been suffering from motor neurone disease for 37 years. He is Ireland’s longest MND survivor and to celebrate his 80th birthday in February, he has just released a book called Against The Odds.
With the help of voice recognition technology, the Leitrim man (who is married to Bridgie and has six children) has detailed his battle with the condition and how he has remained positive through the years.
Why MND is not defining Roisin.
Why MND isn’t defining Róisín
Speaking to a wave of journalists about the grim reality of a Motor Neurone Disease (MND) diagnosis might not be a choice the majority of those living with this particularly cruel terminal illness would plump for. But in the case of Róisín Foley, dealing with the media as she has during MND Awareness Month has been akin to a calling, just nine months after she received the devastating news.
“Well, the way I look at it, if my talking about it is going to increase awareness about Motor Neurone Disease and help raise funds for the (Irish Motor Neurone Disease) Association, then that’s a good thing and I’m very happy to do it,” she told me. “And to be honest, my children are still in school for the rest of the month so I’ve been able to give a nice bit of time to think about what I’d talk about when doing interviews, and I have to say I’m really enjoying it. Now it’s hard to listen to myself on the radio, I’ve not been coping with that too well (!), but other than that, I’ve been having a good time.” In the space of just 75 seconds, Róisín had won me over. Her attitude in the context of the disease she’s living with left me reflecting on the inconsequential nonsense I frequently find myself supposedly troubled by.
Róisín Foley’s attitude to life in the face of her Motor Neurone Disease diagnosis is a testament to positive thinking.
The feeling that something wasn’t quite right first crossed Róisín’s mind on her 30th birthday. “My hands felt weak, and I was having trouble tying my shoe laces,” she stated. “So that led to all the tests and ended in me being told I had Motor Neurone Disease. I was in total shock, the whole thing just felt so surreal. Right now, I feel like I’m doing pretty well, it (the disease) is mostly just affecting my arms and my hands, and it’s still very hard for me to imagine not walking or not talking, so I’ll just have to cross those bridges when I come to them instead of worrying too much in advance about it.” MND wasn’t something Róisín had a great deal of knowledge about prior to her diagnosis. “Nobody in my family or anyone I’ve known has ever had it so all of this was new to me,” she said. “It was a bit of a shock reading up about it, but then the (IMND) Association has really put my mind at ease and they’ve been brilliant when it comes to reassurance, information and support, and the people I’ve met because of my diagnosis have been amazing and they’ve made my life since last September so much more positive.”
Trying to compute the long-term future and the unavoidable reality of what MND will lead to is something which over 370 households across the country – nine of them in Waterford – share with Róisín Foley.And as a single mother to three young girls, Rosie (5), Sadie (6) and Rachel (12), wondering what lies down the line for all three has been as natural a contemplation for Róisín as it is an unavoidable one. “That’s been the most difficult part of all of this for me,” she admitted. “The five and the six-year-olds kind of understand to a certain extent but given their age they can only imagine what’s happening now; they can’t really think too far down the line. I’ve told them that I might end up in a wheelchair, and they’ve both told me they don’t want that to happen but I’ve taken the conversation with them as far as I can given how young they are. Whereas with Rachel, she naturally understands a lot more. She knows what’s happening but she’s also started doing her own bit of reading into MND and she’s very good at explaining to other people even now in terms of what’s happening to me, and I’m really proud of her.”
Does Róisín feel any level of resentment given that MND is partly depriving Rachel of the what encompasses reality for most 12-year-olds, and has therefore and unavoidably forced her to grow up a little quicker?
“Definitely,” she replies. “I definitely feel that for her in terms of her growing up that bit quicker. But in saying that, I’ve got three younger sisters and a younger brother who all live nearby and all of us are very aware of Rachel and not wanting to put too much on her. In the morning time, she helps me with the girls, doing their hair, teaching them to do up their own buttons and so on, but we still have the arguments any mother would have with a girl her age when it comes to cleaning her own bedroom. But she’s a real help. She’s absolutely amazing. The smaller two know that my hands aren’t great – I can still make a cup of tea and give them a hug – but they all click into gear pretty much straight away when it comes to opening or closing something. They’ve adapted amazingly and that has made the whole thing a little easier for me.” Cognisant of what unavoidably lies ahead, Róisín Foley is embracing the here and now. “People go through life so stressed about stuff that really doesn’t matter, but I actually feel blessed that I’ve been given an opportunity to enjoy myself while I can, and focus on the important things. So for now it’s all about family and making memories.”
Drinking tea for MND over the course of June is a small but helpful gesture to aid invaluable work. And it’s the least any of us can do for remarkable people like Róisín Foley.
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