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Dublin: 10 °C Tuesday 19 November, 2019

Column: How I live my life with Motor Neurone Disease

Three years ago, Karl Hughes was diagnosed with Motor Neurone Disease, but he says it’s encouraged him to keep a positive mental attitude and to appreciate the time you have with your loved ones.

Karl Hughes

I WAS DIAGNOSED with Motor Neurone Disease in February 2010 after many tests in the Mater Hospital under the watchful eye of Professor Timothy Lynch and his team. I had been admitted to the Mater at the beginning of January, after a fall on the ice.

The operation to carry out the initial fix of my pelvis was carried out and it was at this time things began to happen. They had issues trying to get me to breathe on my own coming out of the anaesthetic. By all accounts, I believe I gave them all a ‘scare’. Further to this, a number of days later, some food went down the wrong way and I was taken immediately to ICU. I was to remain there for some time until I could be transferred to a High Dependency Unit (HDU). Only after the doctors from ENT were satisfied that I could swallow solids again, did they allow me back to the ward.

Luckily for me, the first operation was carried out so well that in the end, I could do without the second operation (as it stood at the time, anyway). At that stage I was on morphine and I was most definitely ‘out there’ in a world of my own. Not very nice, I can tell you, for me or my visitors, whom I would bore with imaginary things which I felt really truly happened.

My diagnosis

Diagnosing Motor Neuron Disease is very time-consuming as many tests need to be carried out to eliminate all other possible conditions. These tests include EMG, MRI scans, visual examinations to check for fasciculations (twitching of muscles) and many, many questions asked of both me and members of my family.

When I was finally given the diagnosis, I was in shock. My life seemed to be turned upside down. The doctors were still carrying out some tests when I was asked to go to Professor Orla Hardiman in Beaumont Hospital for a second opinion in March. I told the professor that I was in somewhat denial of the whole diagnosis, as I had been fine and healthy up to that day in early January, when I slipped on the ice.

She thought, however, that the doctors in Mater were correct in their suspicions of diagnosing MND. She asked if I could bring a member of my family to the next visit to her clinic. Needless to say, this was now confirming what I had dreaded.

Over the next couple of months, my time was taken up by rehab on my pelvis and also those times spent mulling over what was in store for me. I often thought to myself: “What is the point of the physio coming to me each day to try to get me back on my feet if this illness means I’ll be sitting down for the rest of my days?”

I suppose these thoughts are quite normal for somebody coming to terms with such a diagnosis. I didn’t know enough about the disease. I only knew what I had heard from family and the little I had read in the papers. This is where people need to be aware that life is always worth living to the full, once you have it.

Family and Friends

I am lucky to have an amazing family and brilliant group of friends. At the moment, I am still living alone and am still driving which is amazing. I have no shortage of visitors to the house and have so many people I can go to and visit. I often think that it is sometimes harder for families of patients than for patients themselves. At times like these, life can put enormous strain on the family. I like to spend time with my nieces and nephews. They make me feel young again.

During my lengthy hospital stay in early 2010, my sister and her husband found out that their toddler daughter had Retts Syndrome. A couple of years previously, another member of my family was diagnosed with a serious illness. Thankfully, now, they are in somewhat good health.

My family certainly has not had an easy few years but it is all of this that makes a family come together stronger. I feel now that it is so important to spend as much time as you can with your family as you never know what is around the corner. There is nothing I love to do more than to spend time with my niece and there are a lot of similarities with our two conditions.

There are a number of small issues I face living with MND such as opening bottles, cans, jars, opening doors with normal keys, windows. Walking any distance can be difficult, both from foot drop and muscle wastage. Swallowing and talking when tired can also be an issue.

Positive Mental Attitude

It is essential for one to have positive mental attitude (PMA) whether they have MND or not. Things that assist me in having a PMA are laughing, smiling, achieving things and seeing others happy, as well as being with my beloved nieces and nephews.

Life itself can be seen as a terminal illness, we with MND at least know we have been given the opportunity to spend quality time with our loved ones.

I have been attending LittleJohn Clinic in Walkinstown and feel that their treatment of me with MND is amazing. They do not treat your symptoms but treat the body as a whole. My treatments there lead to both physical and mental well-being.

Prior to being diagnosed, my career was in IT and so typing was never an issue for me. However, I now find I can only type using the two finger method.  But after over three years of MND, that is not too bad. I also love using Facebook to communicate with family and friends. It’s a great way of sharing with a wide audience your updates. One of my favourite past times is doing the simplex crossword in the Irish Times, but don’t give me the Crosaire, I wouldn’t feel great leaving all those boxes blank.

Golf and rugby would be my two favourite sports and most months of the year, there is some coverage on the TV of either sport. Compared to when I was a kid, there are so many good educating, comedy, sporting channels. These too, help to fill those long hours.

Fellow MND Patients

There are a number of fellow MND patients, some who have courageously fought against the disease but have unfortunately succumbed to it, and others who continue to battle on living with MND. All of these people continue to provide me with inspiration in my ongoing battle with MND.

Some of these are: Andy McGovern, who continues to be the biggest inspiration to the MND family, the physicist Stephen Hawking, Joost van der Westhuizen,  South African Rugby Union player, Paul ‘O’Connor, Paul Lannon, Noel Duggan and Nicky McFadden, Fine Gael TD. For those that have lost the battle – Paul Magee, former League of Ireland footballer and son of RTE presenter and IMNDA Patron, Jimmy Magee, Paul Darbyshire Munster rugby fitness coach, Michael Fitzpatrick Fine Fail TD and of course, most recently, Colm Murray the RTE Broadcaster.

The help of the Irish Motor Neuron Disease Association (IMNDA)

The IMNDA is an amazing organisation who rely on fundraising for 80 per cent of their funds. They provide such tremendous support to all in the MND fraternity, both patients and their families alike. It is an organisation I had not heard of before my diagnosis as I did not know of anyone close to me who suffered from MND. The IMNDA provide amazing support to those suffering from MND, both from a monetary aspect as well as sharing from their vast wealth of knowledge of MND.

I really appreciate the work they do when I see what support is available to me compared to that available to my beloved niece, Kayla, who suffers from Retts Syndrome. Unfortunately, Retts is probably similar to MND a number of years ago pre IMNDA where there was little or no support to those suffering from the condition.  I hope that Retts finds its own “IMNDA” soon.

Karl Hughes suffers from Motor Neurone Disease. He would like to thank those who have shown him support over the years. Those people include: His wonderful parents and family members, Prof. Orla Hardiman and all of her team at Beaumont Hospital, Susanne, his Osteopath and all at LittleJohn Clinic and his wider circle of friends Marie Reavey and all at IMNDA.

Read: Colm Murray raised ‘enormous awareness’ about devastating MND>
Pics: Colm Murray laid to rest in Dublin>

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Karl Hughes

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