“A LOT of things ran through my mind when I was diagnosed with Motor Neurone Disease. I thought about my family. I wondered how I was going to cope. But I told myself that I have to cope. I told myself I had to carry on and keep going as best I can.”
Those are the words of 55-year-old Paul King, from Hollyhill, Cork.
Paul was diagnosed with Motor Neurone Disease (MND) in August, 2017. MND is a rare, 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. Some people also experience changes to their thinking and behaviour.
However, MND affects each person differently. Not all symptoms will affect everyone diagnosed with the disease, or in the same order. Symptoms progress at varying speeds, which makes the course of the disease difficult to predict.
MND affects adults of any age but is more likely to affect people aged 50 and over. It is a life-shortening disease. Currently, there is no cure for it, but symptoms can be managed to help the person achieve the best possible quality of life.
Paul was 53 when he was diagnosed. Before then, he started to notice that he was struggling to keep up with his colleagues while working as a docker at the Port of Cork.
He says: “When we were finished unloading the ships, we would climb up the ladders. Some of these ladders are between 50 and 100 feet tall. I noticed I was getting weaker and slower. The lads behind me would be waiting, telling me to hurry on. I had a feeling that something was wrong with me.
“After that, I used to let the other lads climb the ladders first, so I wasn’t keeping them waiting. Then, I’d follow them up.
“When I got up to the top of a ship one day, I realised the lads were already miles ahead of me on the ship and I was only after reaching the top of the ladder. I knew then that there was something wrong.”
Paul started to get pains in his legs and thought he might be suffering from arthritis. On a trip away with his wife, Lisa, he noticed that he was out of breath when out for a walk.
“We went for a walk and I felt Lisa was walking very quickly so I asked her to take her time. I was out of breath and I couldn’t keep up with her. I felt weak. I thought I had arthritis because I had pains in my legs.”
Eventually, Paul decided to go to the doctor. “I told the doctor I felt very weak and that I thought I had arthritis. I told him that I couldn’t lift a full kettle of water.”
The doctor did a blood test.
The next day, Paul’s GP asked him to call to the surgery for a chat.
“He said that something had shown up in my blood tests and that he wanted me to go to the CUH. He made an appointment for me to be seen at 8am the next morning.”
Paul stayed in the CUH for ten days and had a series of tests and scans. The day before he was given his diagnosis, a junior doctor advised him to call his family members and ask them to be present the next morning when the consultant explained Paul’s symptoms to him. His family gathered around him in support and waited for the consultant to deliver the news.
“The consultant sat us all down and told me I have Motor Neurone Disease. I didn’t know much about it. He explained what it was. He told me there was nothing he could do for me. He gave me three years to live.
“Fright set in. A lot of things ran through my mind. I thought about my family. I wondered how I was going to cope. But I told myself that I had to cope. I told myself I had to carry on and keep going as best I can.”
Paul’s symptoms worsened after his initial diagnosis. Eight months after it, he lost his balance.
“I went to get a haircut. I came out of the barber shop and I fell backwards. I needed ten stitches in the back of my head.
“I got a walking aid after that. I had that for two months and then I needed to get a wheelchair because I lost the use of my legs.”
Six months later, Paul lost the use of his hands.
“I can’t wash. I can’t feed myself. I can work my motorised wheelchair but I can’t lift things.
“The toughest part is not being able to wash myself, needing help to use the bathroom, needing help to get dressed.
“Lisa, my wife, is my carer now. Only for her, I’d be lost altogether. My family are very good to me.”
Despite the devastating diagnosis and the dramatic changes to his health and lifestyle, Paul’s mental resilience is remarkable.
“It wasn’t easy to adapt to using a wheel-chair but I told myself, there’s no good in lying down. I told myself to get into it and get out in it and get used to it. Because, you have to adapt. There’s no use in lying down. You have to keep going and get out and about as much as you can.”
As well as the medical consultants that Paul sees every month, he and his family have been supported by the Irish Motor Neurone Disease Association (IMNDA). It was set up in May, 1985, to provide care and support to people with Motor Neurone Disease, their carers and families. There are currently more than 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 symptom onset.
The IMNDA strives to ensure that each individual receives the care and support they need to help them live as active, independent citizens in their community.
Paul says: “The people at the IMND society are so good to people like me who suffer from the disease. When I was first diagnosed and I noticed that I was getting weaker, I couldn’t get up the stairs. I asked the IMNDA for a stairlift. Within two days, they had organised a stairlift for me. When I couldn’t use the stairlift, I asked them for a motorised bed for the front room. The next morning, there was a man came from Dublin with the motorised bed.”
June is MND Awareness month. The Irish Motor Neurone Disease Association is asking the public to Drink Tea for MND in order to raise funds for the charity. To organise your own Drink Tea for MND event in or around June 21, visit imnda.ie. The organisers will send you a free fundraising 4 tea pack, proudly supported by SuperValu.
For more information on organising a tea day, you can email firstname.lastname@example.org or Freephone 1800 403 403.
Paul encourages the people of Cork and beyond to support the campaign.
He says: “The charity isn’t funded by the Government so support from the public is vital. They are a brilliant organisation.
“They can’t do enough for us patients who have this disease.
“We’d be lost without them and I would ask the public to support them in any way, no matter how small. Every little bit of support counts.”
So put the kettle on and have a cuppa to help support more than 370 families right across Ireland affected by Motor Neurone disease.
For more about the supports available to people and their families see https://imnda.ie