Death Sits on My Shoulder

The book is the story of my life with MND, a journey that began some time before I knew it. It begins five years ago, when a glass of beer slipped through my fingers. It then describes how, after many medical appointments, scans, and tests, my self-diagnosis was confirmed, three years later. After the shock of diagnosis, the story covers the inexorable losses that come with this appalling disease, and the physical and emotional challenges that each loss brings. At first, these are...
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The book is the story of my life with MND, a journey that began some time before I knew it. It begins five years ago, when a glass of beer slipped through my fingers. It then describes how, after many medical appointments, scans, and tests, my self-diagnosis was confirmed, three years later. After the shock of diagnosis, the story covers the inexorable losses that come with this appalling disease, and the physical and emotional challenges that each loss brings. At first, these are gradual, and include my lack of mobility, the deterioration of my speech, and the growing stiffness of my limbs. As my symptoms worsen, the book describes how I have to surrender my driving licence, accept an electric wheelchair, and increasingly live life in my head. It also covers the happiness I find during my hospice visits, the kindness shown by my team of carers, and the despair I feel at knowing that will never walk again, nor spend another night in bed with the woman I love. After surviving a bout of pneumonia, during which I feared the worst, the book ends with me feeling guilty for having outlived many of my fellow sufferers, but still glad to be alive.