Amanda Lillis shares her husband Tony's story of Motor Neurone Disease (MND)
Tony, affectionately known as Schillaci – (there is a story behind that nickname) – is my other half and we have four children: Corey (28), Tonieka (25), Zekeisha (17), and Zantianna (12). In April 2022, Tony was officially diagnosed with Motor Neurone Disease (MND) by Professor Orla Hardiman at Beaumont Hospital. But the signs started much earlier, in November 2020, with something as small as a muscle twitch in his arm. We thought it was just work-related strain. But as time passed, that twitch turned into something much more serious.
"Tony’s MND started in his arms, slowly wasting the muscle. Now, even simple tasks like dressing, washing or feeding himself have become a challenge. I’ve taken on the role of caregiver, something I never thought would have happened at 49 years of age."
After months of tests and referrals, our world changed forever. MND is a relentless disease, and one of the hardest things about it is the uncertainty. There’s no way to know how long someone has, or which muscles will deteriorate next. Tony’s MND started in his arms, slowly wasting the muscle. Now, even simple tasks like dressing, washing or feeding himself have become a challenge. I’ve taken on the role of caregiver, something I never thought would have happened at 49 years of age.
Motor Neurone Disease, or MND, is a devastating neurological condition that affects the nerves controlling muscles, leading to progressive weakness and loss of movement. It strips away the ability to walk, talk, and even breathe, all while the mind remains fully aware. There’s no cure, and every case progresses differently, leaving families like ours facing a future full of uncertainty.
"Just recently, we were shopping for clothes, and I was told I couldn’t accompany him into the fitting room. I had to explain to staff that Tony couldn’t dress himself, and the embarrassment and frustration of that moment really hit us."
What’s particularly difficult, and what I want people to understand, is that because Tony looks fine, many don’t realise the battle he’s fighting. Just recently, we were shopping for clothes, and I was told I couldn’t accompany him into the fitting room. I had to explain to staff that Tony couldn’t dress himself, and the embarrassment and frustration of that moment really hit us. If his arms were in a cast, people would understand immediately. But with MND, the struggle isn’t visible, and that adds to the isolation.
We’ve been incredibly fortunate to have an amazing team of doctors and caregivers supporting us. From Cappamore Health Centre to Beaumont Hospital, to Milford Hospice, and the IMNDA – they’ve been a lifeline for us. Tony was hesitant to join the IMNDA at first, probably because accepting their support felt like accepting the reality of the disease. But when we heard about the ‘Walk While You Can’ event, he agreed to register so we could raise money for them. This organization relies on fundraising for over 85% of their income, and the work they do is essential for families like ours.
"For a man who’s always been so independent and capable, accepting this illness was incredibly difficult. But over time, he’s shown even more strength by allowing himself to rely on others when he needs to."
In the beginning, Tony felt a sense of embarrassment — maybe even shame, about needing so much help and support. For a man who’s always been so independent and capable, accepting this illness was incredibly difficult. But over time, he’s shown even more strength by allowing himself to rely on others when he needs to, understanding that asking for help doesn’t make him any less of the man he is. His courage in the face of vulnerability is just another testament to his unbreakable spirit.
So, I’m asking anyone reading this today: if you can, get involved. Whether it’s through organising a tea party, making a tea donation, or just sharing our story, you’re helping make a difference. MND is a brutal disease, but together, we can bring hope, raise awareness, and support those who need it most. You really never know what’s around the corner, life can turn in a heartbeat and when it does it can test everything you’re made of.”
Amanda Lillis
