In early 2025, Anna said goodbye to her husband Nick, following his brave battle against MND. Anna and Nick shared many happy times together, but as his condition progressed, motor neurone disease took away the things he enjoyed doing most. He could no longer enjoy some of his favourite foods or adventures to beautiful locales. However, most devastating for Nick was that MND robbed him of the future he dreamed of - it quickly put a halt to sharing precious moments and making memories with his family.
We'd like to share a letter he wrote about his experience as part of our 2025 Winter Appeal. Sadly, there are many like Nick and Anna whose lives have been turned upside down by an MND diagnosis, and they need support right now - but we can't do this without your help. You can make a donation to our Winter Appeal now here, and help us be there for people facing MND, their families and carers.
This letter was written by my husband of 38 years, Nick, the week before he died. He was the least demanding patient you could ever imagine. In fact, he was extremely grateful, almost surprised, for the assistance he did receive. The support we both received from MND NSW, palliative care services, and RPA respiratory and nutrition departments was outstanding.
The generosity of MND NSW in terms of equipment and suggestions was terrific. No request was refused, and often developed into exploring other practical solutions.
If there is one wish the MND community could have answered, it would be to find a cure for this cruel disease, and until then, to ensure everyone facing MND gets the care and support they need. That of course is dependent upon increased funding. I would not only endorse greater government support, but an increase in the awareness of MND across all communities. Therefore, I hope this appeal is successful and exceeds all targets!
- Anna Murphy
A Letter from Nick
This despicable disease gradually shrank my world. 14 months ago I felt that I had the entire globe to choose from and proved as much by going to Antarctica in January 2024. Then my world reduced to being defined by having to be less than a minute from a toilet in the final weeks.
It destroyed my enjoyment of eating. What was the heavenly delight of rose petal jelly on a clavisienne breadstick still warm from the Claviers’ boulangerie or the anticipation of tucking into a slow roast leg of lamb with all the trimmings has become a beige slop literally being poured directly into my stomach.
It robbed me of a good night’s sleep. I’d gone from dozing off under canvas listening to the gentle wash of the Indian Ocean at Whalebone Beach in WA or surrounded by the roar of a tropical night’s storm on a pontoon on the Great Barrier Reef to the angry hiss of a Bi-pap machine strapped to my face and forcing air into my lungs.
It sapped my strength. From (admittedly reluctantly) weekly strength-building gym sessions I descended to needing both hands to turn my toothbrush on. From hiking over volcanoes in New Zealand or exploring the heights of the Pyrenees to just about managing the few steps from the kitchen to the sitting room.
It prevented me from enjoying my favourite pastime of motorbike riding. I went from the euphoria of riding across the Swiss Alps or the scary exhilaration of outback dirt roads in Australia to being propelled in a wheelchair under someone else’s steam.
But worst of all it has robbed me of the future, I have felt time skidding by as heralded events were scheduled to occur after I’ve gone leaving me with a sadness I’ve never known before. The knowledge that I’ll never be able to take the grandchildren out for an adventure breakfast to give the parents a lie-in or a camping expedition in the backyard. I’ll never see Bas experience the joys of parenting recalcitrant teenagers. I’ll never see a grandchild’s 21st birthday party, graduation or wedding. I’ll never do another woodworking project with Ben, both of us taking as much enjoyment from the problem solving as using the final result or binge watch some dodgy science fiction series. I’ll never again have a long lazy breakfast on the deck high-fiving Anna as we work our way through the newspaper’s Superquiz. Never again will I experience the joy of a group ride barrelling along in country New South Wales on a new route with the niggling doubt that that we took the correct turn at the last junction. Never again will I take a moment to sit back at our dining table and quietly take in the surrounding cacophony of robust discussions at a dinner party.
However, I have had to constantly remind myself that it could have been worse, at least we had the time after retirement to explore Europe and Australia on motorbikes having the adventure of a lifetime.
- Nick Murphy
Nick shared his story with all of us because he wanted to raise awareness about the devastating impact of motor neurone disease, and to help make a difference in the lives of those still living with it. Though Nick has sadly passed, his message lives on. His wish was that we could help others who are facing the same relentless challenge he did.
If you’ve been moved by Nick’s story and want to help make a difference for those living with MND, we ask that you consider making a donation to MND NSW. Your contribution will help provide equipment, care and support to people with MND and their families.