Life with MND (Motor Neurone Disease) by Danny

Danny is a 46 year old Estate Agent, who was diagnosed with MND in 2014. He lives with his wife Annabella, his two teenage children, and his dog Reggie. In his own words, Danny has shared his thoughts and feelings following his diagnosis. Danny is supported by Annemieke, a MND Advanced Healthcare Practitioner Co-ordinator, funded by Forest Holme Hospice Charity.

“When I was first diagnosed with Motor Neurone Disease, it was a complete shock. I couldn’t believe that this was happening to me. I spent months researching other possible illnesses, hoping that there might be some mistake or misdiagnosis.

I had tests for Lyme disease and heavy metals, but they all came back negative. It was a challenging time, and I felt like I was slipping into a black hole of depression. As the reality of my diagnosis sank in, I found myself struggling to cope with the emotional toll of it all. The thought of my children growing up without me was overwhelming, and I couldn’t help but feel a sense of despair about the future. I often cried and found it difficult to engage with life, as the weight of my diagnosis felt too heavy to bear. Despite these challenges, I knew that I needed to find a way to keep going.

With the help from loved ones, I started to explore ways to manage my symptoms and take control of my care. And while the journey has been far from easy, I am grateful to have found support in people like Annemieke, who have been invaluable in helping me navigate the complexities of my condition. Annemieke’s support and skills extend far beyond my medical care. She offers guidance and counsel for my wife and children as well, recognizing the impact that this condition has on our entire family. Her willingness to listen, to offer advice, and to provide emotional support has been a lifeline for us during some of our darkest moments. Without Annemieke’s counsel and support, we would feel lost and overwhelmed. Her presence in our lives has brought a sense of stability and reassurance, knowing that we have someone we can turn to for help and guidance. As I continue to live with Motor Neurone Disease, I have come to understand that time can be an unforgiving force. Despite my determination to remain positive and hopeful, the reality of my condition can often be disheartening.

While there are ongoing drug trials and research, it is difficult to ignore the fact that Riluzole, which was approved over 30 years ago, remains the only approved drug available to slow the progression of MND. The slow progress in the development of new treatments and cures can be discouraging, and it’s challenging to remain optimistic when hope seems to dwindle. Nonetheless, I try to stay hopeful and optimistic, and I am encouraged by the dedication and hard work of the medical community in their efforts to find new treatments and cures. I believe that one day a cure will be found, and I remain committed to doing my part to support research and raise awareness about MND.”