Patricia’s Story

Patricia Yarrow lives in Blackrock in Cork with her husband Leigh. She is 70 years old and is the proud mother of one son and she is expecting her first grandchild in the coming weeks. She was diagnosed in September 2020 with Motor Neurone Disease.

This is her story:

"I looked at a Christmas card passing by the table and looked at it again, it was a card from the IMNDA. It gave me a jolt as it dawned on me that this time last year I knew absolutely nothing about MND. After 10 months of exhaustive tests and investigations around the cause of my slowing and sometimes slurring speech (naively thinking it was great they had found nothing ominous), I received my diagnosis of MND in early September 2020. I cannot find the words that adequately describe the range of feelings that followed, but overwhelming grief is certainly one of them. I was healthy, working, enjoying my life to the full, looking forward to becoming a grandmother for the first time, surely they cannot be talking about me?

By the end of September I made the decision to close my practice as a psychotherapist which broke my heart as I loved my work, but my voice was deteriorating to the stage where it was not really an option to try and continue. If it’s true that one’s work contributes to a sense of one’s identity, I wondered who am I now, Trish with MND? I hated that.

Well, five months on, the meltdowns, of which there were many, have reduced in number but my voice has deteriorated further and I find it embarrassing when I cannot be understood easily. Sometimes it is assumed I am drunk or have an intellectual disability, but whatever the assumption, the word I find that fits the experience for me is “diminishing”. I feel ‘less than’ compared to how I used to be and vulnerable, not being able to express/explain myself, in a way that is new to me. With people I am close to, I can put my hand up and say ’wait for me’ or ‘please don’t leave me out’ because the flow of normal conversation is faster than I had realised and, yes, we joke about it too!

We are all on parallel journeys in life, but there is a loneliness around this journey, being afraid to make plans for the future with confidence, the absence of the lovely taken for granted aspect of life. Family and friends have been loving and supportive and I am blessed beyond words, I cannot imagine getting through this without them, but this is a solo trip necessarily. No one can stop the inevitable decline this disease brings, a stripping away of taken for granted activities and functions and a robber of hope because there is no cure, there is no treatment plan to “fix” it. That’s why awareness of MND is so important and fund raising for further research is so vital. The support the IMNDA offers is truly sanity saving. They swooped in within two days of me contacting them, a visit from Katie, one of four IMNDA nurses who cover the country, within a week, advice, supports, reassurance and a sense of not being on our own were all invaluable in the midst of shock and grief and this support continues.

My biggest fear around this disease and losing my voice is that people will lose sight of me, Trish. My favourite thing in the world has always been the enjoyment of good company and I love the banter and fun, I still do, even though I cannot participate as before, I still enjoy a gin and tonic or a glass of red, have not lost my sense of humour and never want to be the person whom it’s someone’s turn to ‘look after’. I am still ‘me’ and will be, as this disease progresses, so please don’t assume, just ask me! I’m still here though silenced!"