On a recent episode of Disability Matters, host John Comiskey spoke with Naomi Fitzgibbon, Director of Nursing Services at the Irish Motor Neurone Disease Association (IMNDA). The conversation offered a compassionate look at the realities of living with motor neurone disease (MND), the challenges of diagnosis, and the vital support available to patients and families across Ireland.
What Is Motor Neurone Disease?
Motor neurone disease is a progressive condition that damages the nerve cells controlling muscles. This can lead to weakness, loss of mobility, changes in speech, and in some cases, difficulties with breathing. But the course of the illness varies widely.
“Some people may start with mild symptoms, like twitching in a finger or stumbling, and remain stable for years. For others, the disease progresses much more quickly,” Fitzgibbon explained. “That uncertainty makes it a very difficult condition to diagnose and manage.”
The Shock of Diagnosis
Because there is no single test for MND, diagnosis often comes after months of referrals and ruling out other conditions. By the time patients receive confirmation, the news is often devastating.
“Nobody wants to hear they have motor neurone disease. There’s no cure at present. But for many, the diagnosis brings relief too—finally knowing what’s wrong after months of uncertainty.” – Naomi Fitzgibbon
Support That Makes a Difference
Once diagnosed, patients are referred to IMNDA’s specialist nursing team, who provide nationwide support, home visits, and links to physiotherapy, speech and language therapy, and hospital care. The Association also steps in where state systems are too slow—supplying essential equipment within days rather than months.
“Time is of the essence with MND. If someone needs a piece of equipment, they need it today, not six months from now,” Fitzgibbon said.
In addition, IMNDA offers free counselling, peer support programmes, and caregiver training to help families cope with the emotional and psychological impact of the disease.
Research and Awareness
Although the cause of MND remains unknown, research led by Irish experts such as Professor Orla Hardiman is uncovering important insights. Genetic factors appear to play a role in some cases, but progress towards a cure remains challenging.
Meanwhile, awareness is essential. Around 450 people in Ireland are living with MND today, and while the numbers may seem small, the level of care needed is immense.
A Community of Support
Founded 40 years ago by patients and healthcare professionals, IMNDA remains a lifeline for those affected. The organisation is powered by community fundraising—89% of its income comes from donations and events. Campaigns such as “Walk While You Can” not only raise funds but also raise awareness of the condition and its impact.
“Don’t suffer in silence,” Fitzgibbon urged. “We’re here for you from the moment of diagnosis, for as long as you need us.”
Find Out More
If you or a loved one has been affected by motor neurone disease, you can reach out to the Irish Motor Neurone Disease Association via:
🌐 www.imnda.ie
📞 Freephone: 1800 403 403
Disability Matters airs every Thursday at 4PM on Phoenix 92.5FM, with repeats on Monday at 3PM and Tuesday at 7AM & 3PM. Podcast available after each show on Mixcloud and on bcil.ie/radio.
Compiled by Valentyna Hordiichuk