Maebh O’Herlihy’s diagnosis of motor neurone disease is very recent – December 2021. A red flag went up when her GP noticed that her speech was slurred.
“I had actually noticed the first symptoms of something strange appearing in the summer of that year,” Maebh says.
“I was finding it a little difficult to swallow my favourite salad bits occasionally. I also noticed that I was finding it harder to get to the end of long words. I put it down to tiredness as I was packing up to move house and summer is a much busier time on Achill also. In November, my local, and wonderfully supportive GP, overheard me speaking to someone, and suggested I come in for an appointment.
Within two weeks I had an appointment - a challenge in COVID times - and a diagnosis. The version of MND that I have is the bulbar one, which starts from the head downwards, causing loss of swallow and speech first, unlike the other version [limb onset] which starts from the feet and legs upwards.”
Life before diagnosis
Life before MND had been exciting, with Maebh given the opportunity to train, in her 60s, as an ordained local minister (OLM) in the Church of Ireland. That was after retiring from a career as a psychotherapist.
“I had a calling to ordination as a teenager,” she says, “but that would have been a complete impossibility back then. Ordination took place during COVID times with my family thankfully able to watch live on-line thanks to technology.”
Maebh was delighted to be appointed rector of Achill as the island has been, from early childhood, a place she loves. She had moved there in 2000.
“The place has always been my spiritual home,” she says. “The absolute joy of being told the beautiful St Thomas’ Church in Dugort on Achill Island was to be my place of ministry, was truly wonderful.”
Maebh was completely shocked by her MND diagnosis at first, however.
“I knew it was a terminal illness, but had no idea whatsoever about its details and what the journey would entail,” she says. “I took a week to let it settle in, did a bit of research on it and then decided that hiding this away, especially as the symptoms were getting worse, was not the way to go.”
Gift of positivity
A Zoom meeting followed in order to tell her immediate family.
“It was another tough challenge for us all. Thankfully one of the gifts I have is positivity, something that has helped me through a lot of challenges in my life. The next step was telling my parishioners and clergy colleagues.”
In this case, Maebh decided to write a letter to them all.
“I kept it light,” she says. “I didn’t want them worrying about me or feeling they couldn’t talk to me as normal. This was important as my speech was much more slurred, and I certainly didn’t want anyone thinking I was drunk. The result of that letter was wonderful. Everyone joined me on the positivity route, talking to me, and encouraging me to keep going in life and ministry. This has kept me going right up to today.”
Maebh has found the support of the Irish Motor Neurone Disease Association (IMNDA) very important right from the moment of her diagnosis.
“They have been incredible. My MND nurse, Fidelma, is supporting me every step of the way. Within weeks of diagnosis, speech therapy, physiotherapy, dietitian, occupational therapist, and the neurology team were in place.”
Speech technology
Thanks to the IMNDA, she was also provided with text-to-speech technology called SpeakUnique. SpeakUnique offers voice banking technology, allowing people to communicate in their own voice when natural speech is no longer possible.
“The company from Edinburgh were put in touch with me via my speech therapist. They managed to rescue my old voice from the [church] services I had done on video during COVID. I was given an app that I can use on an Ipad that I was given by the IMNDA, and an Iphone which my family gave to me. This allows me to type in what I want to say. I just press a button, then it speaks for me in my voice. Many of you will have seen RTÉ’s Charlie Bird use similar technology.”
At present, 20 months on from diagnosis, Maebh remains positive but is aware that MND is progressive.
“I do need help with the day-to-day things that I once took for granted,” she says. “I have had to adapt to spending more time sitting in a very comfy chair again provided by Fidelma and the IMNDA but while my body is weaker, my mind remains as sharp as ever.”
To help out, a friend has moved in with her, and her family take it in turns coming to see her. Palliative nurses also visit every two-three weeks to check in on her.
Don’t fear the term ‘palliative care’
Maebh believes it is important for people to get past the fear they hold as soon as palliative care/hospice is mentioned.
“You are not about to die,” she says. “On the contrary, you are being offered care and support which could be a great help to keeping you stronger for longer, and mentally able to deal with your disease better.”
Maebh thinks that the more palliative care is talked about, the better. She suggests that booklets on palliative care and day services be left in health centres and surgeries everywhere.
“More people need to know what it means,” she says.
Maebh has these words of comfort for anyone worried about an MND diagnosis.
“I would say to farmers and to anyone living in rural Ireland or in isolation, have no anxiety. Living on an island I have been given every care, support, and assistance I could possibly need through the IMNDA, the MND clinic in University College Hospital Galway [UCHG], Mayo Hospice and palliative home care team and the HSE. I would say never hesitate going to your GP if you are concerned. A diagnosis of MND is scary, but the support that is available is enormous and you will be supported from the diagnosis onwards.”
Fidelma Rutledge
RGN, clinical nurse manager II with the Irish Motor Neurone Disease Association.
“I honestly don’t think I could work with motor neurone disease if palliative care wasn’t also involved in its management of care. It’s a complex disease that is constantly evolving. It requires a multi-disciplinary team involvement and palliative care is an integral part of that team. They continually assess and manage the symptoms such as pain, shortness of breath, disturbed sleep, bowel issues and provide psychological and spiritual support as well. In doing this they improve quality of life and prognosis.
“I am humbled every day to work with Maebh and other people with MND. It is such a privilege to meet people with such adversity in their lives but who continue to get up every day and face life with a smile.
“Maebh has approached MND with an amazing attitude, never saying ‘I can’t’ but saying ‘how can I?’ She has embraced change throughout her condition and continues to support her parishioners with her kind-hearted, witty way. My wish is that Maebh can remain at home for as long as possible. I want to make sure that happens.”
Life to a person’s years, not years to a person’s life
Palliative care is, first and foremost, about life. It is an approach to care that is life-affirming and life-enabling. The ultimate aim of palliative care is to enable every person with an illness from which he/she will not be cured, to live as well as possible right up until he/she dies. This approach was initially applied to people with cancer, but now it is available to anyone with a life-limiting illness.
Palliative care aims to enable a person to get on with daily life and be as independent for as long as possible in the most satisfying way he or she can, within the limits of their illness.
It focuses on adding “life to a person’s years” rather than “years to a person’s life”. Recent research has shown that early referral to palliative care not only led to significant improvements in patients’ quality of life and mood, they also survived longer as compared with patients receiving standard care. (Source: Irish Association for Palliative Care)
Difference between palliative care and hospice
While the terms “palliative care” and “hospice” are sometimes used interchangeably and while they have a lot in common, they are not the same. The main difference between them is when they’re available.
Palliative care is available from the moment of diagnosis. It doesn’t depend on the stage of your illness or whether you’re still receiving curative or life-prolonging treatments. Many people mistakenly believe that you can only receive palliative care when other treatments are no longer possible. Actually, palliative care can be provided to people of any age and at any stage of their illness.
Hospice care is only available toward the end of life. It can be an option when a cure is no longer possible or you decide to forego further life-prolonging treatments. It can be available in a hospital, a nursing home, an assisted living facility or in your own home. Like palliative care, it involves symptom relief and emotional, spiritual and financial support for the patient and their family.
Hospice care is free to all patients. Palliative care generally is too. You do not need a medical card, but if you have private medical insurance, your insurer may be asked to contribute to the cost.