We have posted a bit recently about the people who have disappeared since Shane’s diagnosis. Unfortunately, there have been many. And if I am honest, it is hard for that not to become a focus sometimes. When silence is loud, you feel it. But today I want to shift that focus. Because while many...
Fuck this disease. Fuck You MND. Some days it takes more than it already has. Some days, anger is easier than anything else. Mum and Shane went home after staying with us for just over a week, and within hours it was one of those days that reminds you how relentless MND can be. A lot of physical...
I want to share something that has been sitting heavily with me. Supporting someone with MND is brutal. There is no soft way to say it. Since Shane’s diagnosis, we have watched this disease take things piece by piece. First his voice.He lost his ability to speak and now communicates using a...
After finally kicking off the much-anticipated bathroom project, we’ve hit a significant roadblock with one of the key accessibility features: the height-adjustable basin. Our Occupational Therapist (OT) has advised that this basin is essential for Shane’s needs, but we’re now faced with two...
When Shane was diagnosed with Motor Neurone Disease (MND), it quickly became clear that the journey ahead would be both emotionally and financially challenging. While MND is a condition that requires significant care and specialised equipment, there are glaring funding and resource gaps for...