Updated: Oct 27
This paper reflects on supporting a loved one with motor neurone disease (MND).
In the present, I could only anticipate what would happen in the future. My mother had been my world, and I had to imagine a life-world without her being there for my family. She accepted the “givens” of being diagnosed with MND and was relieved to finally know what had caused her speech loss. I want to emphasise what this loss of speech meant to her and us all at that time. That once-familiar voice was gone. Communication was replaced by a pen and paper in the early months and then by a light writer. We listened to Professor Stephen Hawking responding to us through the light writer. I missed the phone calls giving me those words of wisdom, sometimes well received and sometimes not. She still looked the same, though she seemed to have lost those taken-for-granted facial muscles that enable us to smile, laugh, frown, and gasp. Her emotions were difficult to control; sometimes, she laughed inappropriately. She had tried to lose weight; without effort, the weight now dropped off her because she could not swallow many foods. Food was pureed: though it may have tasted the same, it was unrecognisable. Within months, she had gone from a size 16 to a size 10, never more apparent than the day she opened the door to me, finding it difficult to hold her balance while holding up her oversized trousers.
Harris, D.A. (2017a) Supporting a loved one with motor neurone disease. Palliative and Supportive Care 15, 141–142