Receiving a diagnosis of MND would fill me with fear and dread. I would worry for my family and the burden I may become to them. I would also worry that they would witness my deterioration...I am used to being the one offering support and comfort to my children and would find any role reversal frustrating and upsetting. I would worry about them putting on a 'brave face' to try and make me feel reassured and that they wouldn't be getting the support they need to cope.

Speed of deterioration would concern me. Not knowing how long I had before things began to change and I started to lose my independence. I would want to know what help (practical and financial) was available for myself and my family, I would want to know a timeline of expected deterioration, usual patterns etc. Food and nutrition options would be a worry for me as cooking (and eating!) are things I enjoy.

The biggest and most overwhelming worry would be about how long I had left, both until I lost my independence and also until I died. I would be worried about not being able to breathe and how frightening this might feel and the trauma this might cause to my loved ones. Reflecting on these concerns, question and worries highlights to me how much of yourself you can lose physically to MND whilst retaining your mental capacity and this must feel like a very lonely place to exist.