When David my husband was diagnosed on the 1st May this year of course we were devastated but when we were then informed that our first port of call was palliative care we were scared. In the 4 months and 9 days until his death on the ninth of September, the speed with which MND consumed him was unbelievably rapid. Within three weeks he was in a wheelchair and within 10 he started suffering breathing issues, brought on by pneumonia. The longed for and expected plateau which most MND sufferers reach, sadly never arrived for David.However the lack of knowledge of the disease, even from those in doctors surgeries, nursing and hospital environments, is startling and unbelievable. How cruel and terrifying life is when your dreams and plans can no longer be enjoyed, when the expert advice you desperately need is only available 9 to 5 Monday to Friday and all that is certain is loss. Loss of mobility, loss of dignity, loss of hope and finally loss of life. So I want to make two suggestions based on our experiences: The first is how we enable people to have informed and coherent care. When David was in hospital for 5 weeks each change of staff had to be informed of Davids condition. His lack of mobility and ability to perform certain tasks. I suggest that a booklet be created, to be passed to each new sufferer and their carer. Within that booklet the changes experienced by each individual could be charted. Their abilities, problems, issues being confronted, medication being given, equipment requirements etc might be updated, perhaps by a tick box and additional comments section, daily weekly or whenever necessary. That booklet could accompany them wherever they go. Thus the constant repetition of information might be avoided, and ultimately those booklets might may generate new insights into the way the disease affects the body in much greater detail to aid those seeking a cure.
The second is to ensure more nurses are trained to understand MND issues. These informed staff might be available by phone 24/7 (ideally at every hospital) as fear of the next issue to be faced can be terrifying for all of us. The weekend before David died it took me 6 hours and several telephone calls, to get someone out to attend to his catheter! I became apoplectic when his peg site looked like it was leaking. That incident took four telephone calls to sort out!
I would consider it a privilege to assist in these endeavours. Davids donated his brain and spinal chord upon his death to assist in the search for a cure. I cared for and witnessed his suffering and like many others desperately need to do something to HELP. MND takes away this ability and all one can do is watch and wait. We need an opportunity to feel helpful again. This is my way of trying to do that and at the same time honour Davids bravery and acceptance of this insidious and horrific disease. It's helped me to share our story thank you for listening.

however on the day consumed by emotion and the sharing of others I winged it and spoke from my heart where David is.