“I can’t control this MND, but I can control my attitude”
Ben Reilly was diagnosed with motor neurone disease in February 2020, at 36 years old.
In October 2019, Ben, a health teacher at a Perth high school, was teaching his Year 12s and found he was struggling over words and phrases. It would come and go but mainly occurred when he would speak for long periods of time. Over the next few months, he noticed other little things, like inadvertently biting his cheeks and lips, difficulty chewing and odd painless cramps in his hands. Singing felt different and he couldn’t whistle anymore.
“It was all very hard to explain and they were all very small symptoms in very small amounts. I put off going to a doctor for a long time,” recalls Ben.
Ben spent the summer holidays with his family – his wife of sixteen years, Emma, and their three boys, Van, Cole and Dash – taking their usual trip down south, celebrating Christmas and having barbeques. When he returned to work for staff meetings at the end of January, he quickly noticed his voice was even worse than last year and was concerned for starting classes in a few days.
“My first class came, I spoke for two minutes and all of a sudden I was almost indecipherable. I wrote directions on the board, got another teacher to wrap up and went to the doctor to demand answers.
“One week in hospital, about ten different tests, and a horrific diagnosis later, I walked out with MND.”
Ben describes the feeling he had upon diagnosis as ‘horror’.
“I wanted answers. I found the information so limited. I wanted the doctor to tell me what I needed to do. As a young fit man, I wanted to be active. I wanted to do something to feel like I had some power in the situation. But I quickly found out I had little to none. I was scared and angry. I was upset.
“I was given a pamphlet about MND with ‘frequently asked questions’. One was ‘how long does someone live after diagnosis?’ and the answer was ‘on average, two and a half years’. NO WAY! Are you telling me I’m not going to see my three boys grow up? Like I said, absolute horror.”
Apart from an amazing aunty who passed away from MND a few years ago, Ben says his knowledge of MND was based on what he had seen on ‘House’ and ‘Grey's Anatomy’.
“Family and friends didn’t know what to say. I didn’t even know what I wanted them to say. Everything you can imagine people saying, they did: from telling me about miraculous healings, to offering meals, to suggesting second opinions, to anger, to finding some random treatment in the Congo that only costs $100,000!”
Joking aside, Ben has been humbled by the level of kindness shown by his support network. His main concern has always been that his family would be looked after, and so far that’s exactly what has happened. Family, friends, church members and college staff have gone out of their way to help the Reillys.
“It has meant everything to us,” says Ben.
Symptoms and the rate of progression of MND vary significantly from person to person. Ben is most affected by the loss of his voice.
“As a teacher and a parent, I use my voice all day, every day. It’s a massive part of who I am. If I’m not explaining something, telling someone off, or spinning a story, then I must be asleep. Not being able to read my kids stories at night, teach my students about health, or sing Boyz II Men in my car has been awful.”
The whole Reilly family have begun learning sign language.
Ben joined MSWA in February 2020 and accesses counselling, physio, OT services, nutritionist, speech therapist and the nursing team.
“If they’ve offered it to me, I’ve taken them up on it,” he jokes.
“MSWA has given much support. When I was first diagnosed, I felt lonely and that no one could help. Then suddenly I had an army of specialists booking me in to help me. Everyone has been incredibly nice, caring and professional.”
“I also have an NDIS plan now and my wife and I wouldn’t have been able to navigate through the maze of applying if it wasn’t for MSWA’s guidance and willingness to help.”
MSWA regularly contributes funding to research surrounding this neurological condition.
There is currently no known cure for MND.
As a Christian, Ben says the hope he has in God is what keeps him going. He has always countered life’s challenges with his faith, humour and positivity, and says his MND journey will be no different.
“I believe that we always have power, just not always in the way we want. I can’t control this MND, but I can control my attitude. I choose a positive attitude, so I can enjoy whatever time I have left. I believe I’d choose to live the same even if I didn’t have MND.”
Ben and his family host the funny and inspiring YouTube channel ‘Team Reilly vs MND’, documenting his MND journey, with a heavy helping of the aforementioned humour and positivity.
“Ultimately, I want to help others with this. I’m incredibly blessed to have such support so I would love to help those who don’t. I hope I can encourage others and help strengthen those who need it. We all need help at times, I’ve received a lot, I want to do the same for others.”
MSWA provides vital support and services to Western Australians living with all neurological conditions. If you have been diagnosed with MND, contact us to see how we can help manage symptoms and support your daily living needs.