The last 18 months have been hard on everyone, but some more than most as the pandemic caused many people to become sick and lose their lives. And whatever the circumstances of their passing, losing someone you love is never easy, no matter how long or short the time you had together was.
Roisin Clarke knows only too well how devastating this can be as she lost her husband Alan to Motor Neurone Disease (MND) in 2020, four years after he first noticed that something was wrong and was subsequently given the tragic diagnosis.
“I met Alan 27 years ago and we got married on May 6, 2000,” says the 50-year-old.
“We built a lovely bungalow and had two beautiful boys — Raymond (20) and James (17) — and I have always felt blessed with my life and my fantastic family. Alan was a self-employed electrician and always had an obsession with cars and machinery.
“He would always be buying and selling them and spent countless hours going to trade shows and auctions. He also loved diggers and machinery and was forever coming home with different parts and scrap material.
“First and foremost he was a family man — Sundays were our days together and we would go to mass first and then I would cook a roast, or we would go out to dinner. It was the only day I saw him in good clothes and usually there would be a match on somewhere or we would go away for a spin somewhere, up the mountains, to the beach or for a picnic — life was a dream.
“But in March 2016, our world came crashing down. Alan had a strange feeling — a sort of tingling in his arms and legs and he couldn’t find a way to warm his hands up. So we both decided that he needed to see the doctor.”
Alan’s GP was also concerned and referred him to a specialist, where barely a week later, he was diagnosed with the devastating condition.
“Alan didn’t realise what Motor Neurone Disease was, so when he left the neurologist, he rang me from the car on his way home,” says Roisin, who is from Carrickmacross, Co Monaghan.
“I remember that I was getting ready for work and when he told me, my heart just sank, and I had shivers down my spine. Alan pulled in off the road and Googled it, he was on his own (when he found out about it) — and we were really not expecting to receive news like this.
Roisin and Alan Clarke with sons Raymond and James
“I was waiting for him in the kitchen with the kettle on and we sat at the table and cried. He just said, ‘Families get different news every day of the week, so why not me?’ and over his four years with MND, this outlook never changed — but it was the first day of grieving for me.
“However, we decided there and then that we would come up with a plan to tackle this. We would pretend that nothing was wrong, and we would keep ourselves in a little bubble — apart from once a month when we would come out of the bubble for his check-ups at the hospital.”
Having discovered the reality of a MND diagnosis, the father of two decided to take control of the situation by ensuring that his beloved family wouldn’t have to deal with any unnecessary problems once he was no longer around — and they made sure to make the most of the time they had together.
“Alan was a very practical man,” says Roisin, who is the eldest of eight siblings.
“He went to the undertaker and told him his wishes, then visited the solicitor and got his affairs in order.
“He didn’t want to cause his family any extra stress or worry, so he also folded up his business.
“This was heart-breaking for us — absolutely horrendous. But the day he sold his work van, he shook the man’s hand and wished him the best of luck. Alan was very strong mentally and physically, but that was a hard day for him.
“From that day on we did as much as we could with the two boys. We went on a Mediterranean cruise while Alan could still walk and we went on weekends away, had picnics, went out for meals and to the movies.
“We had two very good years which we spent creating special memories.
“Then, even when the wheelchair arrived (as his mobility declined), we didn’t let it stop us — instead, we bought a wee van and had some great laughs in the middle of pure turmoil.
“We also had a fantastic MND nurse called Eithne, who really lightened the mental load for me.
“I honestly do not know what we would have done without her and the support of the IMNDA, who are made up of a fantastic team — they work with every family (affected by the condition) each step of the way.
“Nothing is left undone, and they work with you at whatever pace you are at.
“I will never ever forget the conversations with Eithne — and the funding for all the equipment and the speed in which it was in our home was just unbelievable.”
Roisin, who works for the Irish Blood Transfusion Service, is still reeling from the death of her beloved husband, but says family, friends and colleagues have helped her to get through — and she will see Alan again.
“I have a fantastic family and work colleagues, who are like extended family, and I would have been lost without them all and their support over the past few years,” she says.
“Alan was the love of my life — and some people don’t experience, even a week of the love we had.
“He died on our 20th wedding anniversary in my arms surrounded by his boys, his fantastic mother, two sisters, his extended family and work colleagues.
“I whispered into his ear that on that moment 20 years previously, we were having our first dance as Mr & Mrs.
“A tear rolled down his cheek as he took his last breath and I just said ‘Alan, I will see you on the other side’.”
ABOUT MND
• Motor Neurone Disease (MND) is a progressive neurological condition which 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. 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 cause of MND is not known. There may be environmental factors that trigger the damage in people who are susceptible to the disease. Ongoing research is necessary to find out the nature of these environmental factors, and what makes one person more susceptible than another.
• MND strikes people of all ages and currently there is no cure, however symptoms can be managed to help the person achieve the best possible quality of life.
• Men are 2-3 times more at risk in comparison to women. Normal age of diagnosis is between 50 and 70 with a lot of exception as people can be diagnosed with the condition at any age
• Early warning signs vary from person to person, depending on the type of MND they may have. Some people have slur in their voice, others may experience tripping or clumsiness in their hands.
• Early diagnosis does not necessarily mean a better outcome, but it would mean the patient would have access to specialised care, equipment, and counselling sooner which could help them to deal better with their diagnosis.
• The Prognosis is generally 3 – 5 years from onset of the disease
For more information visit www.mndassociation.org and www.imnda.ie
