Facing a tough challenge with bravery
Eugene and Marie Loftus talk to Jessica Farry about motor neuron disease, supports available, and ensuring life isn't all doom and gloom
They say that laughter is the best medicine. This certainly rings true for West Sligo couple Eugene and Marie Loftus who say that humour is the key to getting through a difficult time together. They should know. Eugene was diagnosed with Motor Neuron Disease in December 2014 and life as they knew it has had to change.
But, there's very little time for self sympathy. Eugene was a teacher before his retirement. He loved the farm, doing the gardening.
He told The Sligo Champion from his Killanley home, just outside Corbally: "I was very active. I played a bit of tennis, fishing, played the banjo, the piano, painting. Since the time it was diagnosed in December 2014, I've lost all those things gradually."
The first hint Eugene got that there was something wrong was when he was rattling the stove. He noticed a bit of stiffness in his hand,but thought very little of it at the time. As this issue became more and more prominent, he began to think that it was Carpal Tunnel Syndrome.
Again, Eugene still felt as though it was nothing serious. When he visited his GP for the flu injection, he mentioned it.
The GP referred him to Galway where he underwent a series of tests to determine the problem.
It became apparent pretty quickly that Motor Neuron Disease (MND) was likely to be the diagnosis.
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.
Eugene continued: "I have things called fasciculations, under my skin. That's the impulses returning from the sites where they should be doing their business. They're not working because the nerve fibre is malfunctioning.
"The doctor said 'it is not Carpal Tunnel Syndrome, it is Motor Neuron Disease'. I didn't feel sick. I knew what MND was because I used to teach it in school. He asked if I had not noticed fasciculations and I said I had never noticed. When I looked at my arm I could see twitches. While I was saying that I didn't notice them before, I was thinking that I did feel them, especially at night time. I think that was happening for two or years.
"When he said Motor Neuron Disease I said 'isn't that kind of serious?'."
Eugene's wife, Marie, had noticed slight twitches at night-time over the year before his diagnosis, but again didn't think there was any cause for concern.
"I just thought it was Eugene," she told The Sligo Champion.
In August of 2014, just months before Eugene's diagnosis, the Loftus family took part in the 'Ice Bucket Challenge' which raised funds for the MND Association, not knowing what lay ahead.
Marie had also just retired before her husband's diagnosis.
"I had just retired in August and Eugene was diagnosed in December. We had retired with the idea that we were going to be free to travel and cycle and climb mountains. Eugene had this idea that we were going to do the whole of the Ox Mountains except the last bit. We did it over periods of time."
They were referred to MND clinic under Professor Orla Hardiman in Beaumont and also pointed in the direction of the IMNDA - the Irish Motor Neuron Disease Association.
Eugene began attending the clinic run at Beaumont Hospital every three months or so. A clinic is available where there is a multidisciplinary team consisting of physiotherapists, neurologists, dieticians, occupational therapy, research students and nurses.
Marie explained: There are 4 visiting nurses now where before there were 3 for the whole of Ireland. This will increase in time. "That all came from the money that was raised by Father Tony Coote, who did 'Walk While You Can'. He raised over half a million and it's still coming in. It has made extra visiting nurses and research possible."
Many pharmaceutical companies and research students have involved Eugene and Marie in their MND research as they try to determine if there is a possible cure. But some of the research projects have examined the impact on carers like Marie.
"There was one done by a student who was particularly interested in the carers. She had a survey over so many months and she would compare the results. She wanted to put in place support for carers. She also said when they talked about a pilot project, very often they would want to do it in Dublin. She would say 'it's alright for someone in Dublin they can go to the end of the road to buy a pint of milk'. She could see the practicalities of it."
This is a very real problem for some carers. For Marie, everything has to be planned in advance. She has to ensure that someone is at home with Eugene at all times.
"If I need to nip to the shop I don't go unless there is someone here. I have to plan everything ahead. That's happened really since April. I would never be away from him for longer than an hour before that. Before, he would be able to sit up during the day in the living room. He would take a nap because he would be very tired. Since then he had a RIG put in for feeding We have noticed since Christmas the degeneration in his back has been greater so he's only comfortable when he's lying down or reclining. You try to think of things to make it easier. I got a little camera which is a two way speaker thing so I can check in on him."
Eugene's degeneration has been gradual. But since Christmas, there has been an increase. Despite this, though, he is still in a positive mindframe.
The condition has almost taken control of his body, but Eugene isn't giving up just yet. He won't let it get him down.
"It started with the hand, then the fingers, then I started losing flesh on my arm. Because of that I started getting weaker and weaker. But I had my other arm. That's why I was given two! The next thing I noticed was, maybe three years ago, when I stood up I felt a weight on my shoulders. It was just apparent then. It was a strange feeling.
"That has now developed where if I go to the bathroom, by the time I'm finished I have to lie down. My body is such a weight that the muscles which are there have receded somewhat and can't support the weight of my body.
"When I was diagnosed I thought I might be dead in two years. The first two years were a bit awkward coming to terms with the idea. I never really had to come to terms with the idea because the two years came on pretty quickly and I wasn't feeling too bad. It was a particular type of MND. It's a slow moving one. Others lose their voice and all straight away.
"I believe I will be here for quite a while, having made up my mind that I'll be heading off sometime, maybe sooner rather than later."
He has been largely confined to his bed since earlier this year as the disease progresses. The couple's ability to laugh as they recall stories is truly remarkable.
They have proven that it doesn't have to be like the end of the world, even if it may feel like it at times.
Marie explains: "I was looking at photos the other day. At the beginning of March 2018 and April 2018 we were able to go away. We went to visit a cousin of mine in March in England and we went to Prague for my 60th last April. We had to pace it, we used buses and we would walk so far and then rest. It was manageable.
"We had planned to do a bit of travelling and touring last summer and then I broke my leg. I was going out to put in the hens and fell and broke my leg in three places. That put a halt to all gallops for five months until I got off crutches. We were into September.
"He wasn't driving and I couldn't drive and we're five and a half miles from town. We discovered Tesco online shopping but we also discovered our family, neighbours, friends who were outstanding. We managed.
"I could use my hands but I couldn't use my legs, he could use his legs but not his hands so what we would so was. I would do the chopping and whatever else and I'd lean against the worktop and use the trolley and he could push the trolley because he had enough to walk it across to the table. We got in touch with the public health nurse.
"Eugene had the flu and he was upstairs. The Motor Neuron Association stepped in. They said that Eugene needed a chairlift to get upstairs to save his energy because the stairs were becoming a challenge. The chair came the day before I came out of hospital."
"The chair was meant for me but she got using it first!" a jovial Eugene chimed in.
Marie added: "Our holidays always would have been camping. We would be outdoorsy people. That was a plan that we had, we would go travelling. That can't happen now. Our last trip would have been in September when we went to Donegal in the camper. Eugene had the wheelchair back then. He can get from a to b with support but only for a short distance."
While there may not be a cure for Eugene's condition, there are supports out there to make life easier. Marie can't speak highly enough of the support she and her family have received since her husband's diagnosis.
"We have our public health nurse, she is super. There's the GP, the Occupational Therapy service, they are on the ball. From our perspective it has been superb. The home help service is being cut around the country. It's not good enough.
"There are people out there who are not being looked after and could be in their own homes. It's much easier for people to recover and be looked after in their own homes with a small bit of support."
Eugene knows better than most about the importance of being cared for at home, although his stints in hospital haven't been all bad.
He said: "It's much easier to be at home than in the hospital. I'm smiling as I say that because I had 11 days in Beaumont," Marie added: "and he loved it. He came out on Tues and on the following Sunday and said 'I miss the hospital because there was great craic there'."
National MND Awareness Day that is taking place this Friday, June 21st. 'Drink Tea for MND' is a fundraising initiative organised by the IMNDA which allows people to host a gathering of friends, family or indeed strangers to raise awareness of MND and of course to raise vital funds.
Marie and Eugene Loftus will be hosting their own event this weekend. Marie knows better than anyone how vital the services of the IMNDA are.
She explained: "The Drink Tea for MND' last year raised funds that allow for holistic treatments for the carer, counselling for both Eugene and myself, a certain number of home help hours, they help with cleaning if you want it. That fund is there as long as this pot of money is there. I know the benefit of it and I know it first hand. So I said we had to do something for the fund. It's to raise awareness as well.
"The Motor Neuron Association are fantastic are supplying material goods that you need. For example, the hospital bed through the OT and the MND Association, the OT would have provided the bed and the MND Association would provide the mattress. The machines are provided, one is for breathing because the diaphragm isn't strong enough. The other two are for cough assist and suction. They are provided to you. I couldn't imagine if you had to pay for it."
If you wish to donate but cannot attend Eugene and Marie's Drink Tea for MND event, you can donate online on iDonate.ie.