Living with motor neurone disease: ‘I hoped I was suffering PTSD’

As a nation of raconteurs, most of us love to talk – about the weather, the state of the world or what we did last weekend. But for a small sector of the population, having a chat isn’t an option as, due to the symptoms of motor neurone disease (MND), they have lost the power of speech.

At least 140 people are diagnosed with the condition every year in Ireland, and 80 per cent will experience speech deterioration at some stage.

Mairéad Coleman knows exactly what this is like. In 2017 she was diagnosed with bulbar palsy motor neurone disease and, along with other crippling symptoms, finds it increasingly difficult to talk.

“My first indication that something wasn’t quite right with my health was at a fundraising event [in 2016] when suddenly I began to slur my words,” says the 50-year-old. “I was really embarrassed as I only had one glass of Prosecco and knew it couldn’t be that. Prior to this, I had a couple of nasty colds and chest infections and was also extremely tired all the time, but put that down to working too hard.

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“Then, in December 2016, my husband, Michael, suggested I go visit my doctor as he began to notice the occasional slurring of words. After describing my symptoms, the doctor put me on a course of antibiotics, but in January I still wasn’t feeling well and was diagnosed with pneumonia in my left lung.”

Following this, the Mayo woman had several rounds of antibiotics and blood tests, but was still suffering from slurred speech, so suggested to her doctor that perhaps there was a neurological issue – as she had tragically lost her son to cancer in 2013 when he was just 16. “I thought maybe I was suffering from delayed post-traumatic stress disorder [PTSD] and overwhelming grief as a result of Cian’s illness and death, and that it may be affecting my speech,” recalls Mairéad. “My doctor referred me to a neurologist and, while waiting for the appointment, I also had a lung function test, sleep apnoea test and a blood test to rule out myasthenia gravis.

“These results were negative, and when I saw the neurologist, I was in reasonably good health, but my speech was becoming more noticeably slurred and I was having episodes of shortness of breath and fatigue. I still didn’t think anything sinister was going on and thought with time and rest I would eventually learn how to continue life without Cian.”

Google searching

During the neurology consultation, she underwent a nerve conduction study and some visual tests where the expert began to suspect she was suffering from bulbar palsy MND – but the prospect of this was too overwhelming for her to even consider. “Whilst the doctor mentioned MND, I went away trying not to overthink it and just wait until my next appointment,” she says. “Of course, Michael and I did some Google searching, which horrified us, so we decided to put it aside until we were told otherwise. I was still holding out hope that I was suffering from PTSD, even though I was told that my symptoms were not typical of this.

“But in October 2017, I attended my first MND clinic, where my diagnosis was confirmed and I was introduced to various support networks and immediately put on medication to suppress the nervous system and hopefully slow progression. “That day was very, very difficult. I attended the clinic alone, even though Michael really wanted to come with me, but I wanted to protect him and said I wouldn’t be told anything bad, even though in my heart I knew. I called him immediately afterwards and arranged to meet him for lunch, where I gave him the dreaded news. He was devastated and in total disbelief, as he couldn’t believe this was happening again to our family.”

Mairéad’s biggest concern was how her husband and daughter would cope with her diagnosis and subsequent illness, having already weathered Cian’s death. “Cian only had 16 years on this earth, while I have had 50 – so I didn’t feel sorry for myself, but I am heartbroken for Michael and Hannah,” she says. “Numerous things were running through my head, such as ‘How will Michael and Hannah cope with this again and will I see Hannah get married and meet her children, my grandchildren?’ Our small family of four will become two, and it’s just so unfair on Michael and Hannah.

“After telling Hannah, we decided not to tell any other family members until we came to terms with it. We talked it out, cried it out and then, after a couple of weeks, told families and close friends. Everyone was in shock and couldn’t believe what we had to face for a second time. For me it was important that I received positive support rather than sympathy. I am a very active, positive person who tries to enjoy life – even after all we have been through already. So once the news got out into the community, I insisted on telling everyone that while I have received a diagnosis of MND, I’m still me and I’m going to continue doing what I do until I can’t.”

This month MND Ireland is running its annual sponsored silence campaign – #Voice4MND – which involves staying silent for just 30 minutes to experience what it would be like to be unable to speak (to get involved, email fundraising@imnda.ie for your "Silence Pack" or text MND to 50300 to donate €2).

Suffering a setback

Over the past two years, Mairéad has done her best to deal with her illness and live life to the full. She registered for the IMND association and receives support and advice whenever it is needed. She continued to work (as a reflexologist and bio-energy therapist) and took a long-haul trip to Dubai at the end of 2017 – but unfortunately this resulted in a nasty chest infection, which caused a setback.

“This was the first time reality kicked in and I realised that I needed to start looking after myself and allow my body to recover from the shock of diagnosis and to build up my immune system and rest,” she says. “Giving up my work was one of the hardest decisions I had to make, as I absolutely loved it, but it was only when I took a step back that I realised how tired I was and how necessary it was to rest, as I want to be here for as long as possible.

"We took several other trips [Cape Town and South Africa in early 2018 and Germany in September 2018] but, while I was lucky to be well enough to travel, I got a bad chest infection in September, which took weeks to recover from, and I was given a cough assist machine and suction pump to help clear my lungs. I have also had a hospital bed put into my bedroom, as it's difficult to breathe on a flat bed, and this has had a huge impact on Michael, as it's the first time in 25 years that we have slept apart, and this was very upsetting. It was a step in the wrong direction and another sign of deterioration. Also, the muscles in my mouth, including my tongue, are very weak so I need to use medical equipment every day and night to keep my chest clear. This takes up a lot of precious time, but is a necessary evil."

Mairéad has had a few difficult months battling with chest infections and breathing issues and has now been introduced to peg (tube) feeding to minimise risk of choking. But while the disease has had a huge impact on her life, she remains positive and cherishes every moment she has with her family.

“My everyday life is restricted in many ways,” she says. “I’m very susceptible to infection, but for now I am doing very well – I live my life and treasure my family and friends, who surprise me all the time with their constant friendship, generosity and understanding.

“I am a very positive person when it comes to my illness and embrace the changes it has made to my life. Of course, sometimes I have meltdowns, but for the most part, I’m enjoying my family, my friends and my life – so bring it on, I’ll keep fighting until I can’t fight any more.”

ABOUT MND

– Motor neurone disease (MND) is a progressive neurological condition that attacks the motor neurons, or nerves, in the brain and spinal cord, gradually leading 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's unlikely they will all develop at the same time, or in any specific order.
– It 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.
– Symptoms include wasting and weakness of muscles in hands, stiffness and weakness in legs, slurring of speech, difficulty in swallowing and coughing, problems with breathing, extreme tiredness and weakness in the muscles in the tongue.
– Some may experience changes in thinking, reasoning, emotions and behaviour.
– About 140 people are diagnosed with MND in Ireland each year. Currently there are just over 372 people with MND in Ireland. One person is diagnosed every two days and one person dies every two days.