However, we both recognised that his ability to participate in and enjoy life was being completely eroded by the illness and a constant feeling of exhaustion and being unwell. Over recent months we had discussed his growing dependency on his NIV, and as he said last month, it provided an opportunity. He has always been determined to stay one step ahead of this disease, by organising equipment and appointments and devising strategies so that nothing took us by surprise. So finally he made the brave decision to exercise his right to refuse treatment and to ask for his ventilator to be withdrawn. Our lovely community palliative care team made the arrangements for him to be admitted to the local hospice, and true to character he remained in control and was calm and comfortable as he fell asleep, with his family around him.

Peter leaves a massive gap in all our lives, but as a family we are immensely proud of the way he confronted his illness and of his hope that by recording his journey he could help others.

Sue