Living With MND: Helen’s Story

Helen Brennan carries a writing pad with her everywhere. It has become her voice — her way of staying connected to the world she has always been part of.

Helen is a retired ICU nurse from Castlegar, Galway. For decades, she cared for people at their most vulnerable. A little over a year ago, life changed unexpectedly when she began to notice subtle changes in her speech — changes that eventually led to a diagnosis of Motor Neurone Disease (MND).

Since then, Helen has lost her ability to speak and swallow. She now communicates by writing, carrying a small notebook with her at all times.

For Helen, losing the ability to enjoy food — once among her greatest pleasures — and the simple ritual of meeting friends for a coffee or a pint has reshaped her social world. But she has adapted.

She walks her dogs daily, shops with her sisters, and stays closely connected with the people who matter most to her. Every Thursday, she swims with a group of retired nursing colleagues — something she treasures. Where life has changed, Helen has adapted — not by denying the losses, but by meeting them with courage and resilience.

MND affects everyone differently, but its impact is always profound. As a progressive neurological disease, it weakens the muscles that allow us to walk, speak, eat, breathe, and move. There is no cure, and its cause remains unknown — but symptoms can be managed. And this is where Galway Hospice comes in.

How Galway Hospice Supports People Living With MND

Our multidisciplinary team includes clinical nurse specialists, physiotherapists, occupational therapists, social workers, art therapists, chaplains, and palliative care doctors and nurses. Together, they help patients manage symptoms, maintain comfort and independence, and continue living in the ways that matter to them.

“As nurses, we try to support people to live as fully and comfortably as possible,” says Martina Considine, one of our Clinical Nurses. “One of the biggest misconceptions about hospice is that it’s only for the very end of life — but that isn’t true. Early integration can improve a person’s quality of life, and that’s always the goal.”

Martina is part of Helen’s care, and she speaks softly when describing the impact of MND on both the person and the family.

“We support the whole family,” she says. “Something like this affects everyone. It breaks your heart, especially knowing the work Helen did for so many years. She cared for people with MND long before she ever imagined needing that same care herself.”

At Galway Hospice, we strongly advocate for early palliative care involvement for people with MND. When symptoms begin to affect daily life — breathlessness, weakness, swallowing difficulties, fatigue, emotional strain — early support can make a significant difference.

Holding On to What Matters Most

Even though Helen has lost two of the abilities she valued most — her voice and her ease with food — she has not lost her spirit. She continues to live day by day with resilience, humour, and determination. She refuses to let MND define who she is.

Her courage is felt throughout the hospice — by staff, by her family, and by everyone who has the privilege of meeting her.

Helen’s story is just one of many. There are currently over 470 people living with MND in Ireland, with around 150 new diagnoses annually. At Galway Hospice, our support for people with MND continues to grow: from 14 patients in 2021 to 35 in 2024 — and rising, as awareness of early palliative care increases.

We are deeply grateful to Helen — and to her family — for allowing us to share part of her journey. Her voice continues to say so much.