Andrew Knowlman was diagnosed with motor neurone disease at the age of 47. In an interview with i he describes how rapidly his life changed, along with the lives of his wife, Jane, and their two children, Valentina and Sebastian. And how he became a children’s author, completing and publishing his first book even when the devastating neurodegenerative disease rapidly took hold.
At the end of our interview he used the “eye gaze” machine he uses as his only form of communication to read out his own “Christmas message” – a few reflections on the enormity of living with MND – which was originally posted on his blog, stopforamomentpeople.com.
This is it:
“Thanks to everyone who has supported us this year. I hope that you enjoy the Christmas celebrations.
“A few reflections from me, not really related to the season. This stage of MND is significantly less comfortable than the earlier ones. There are often times when it’s all too much. There are of course good times as well. I don’t have the relationship I could have had with my kids. Sebastian can’t sit on my lap, which is frustrating for him. I’m not much fun or much use. He enjoys driving me like a nutter in the wheelchair. He juggles and we watch Police Interceptors. I’ve been able to arrange things using email and Twitter. I can’t support Jane and sometimes I see the effect. She does so well.
“I have a nasty, chesty cough, which fills my throat and mouth with sticky phlegm. It can be scary. The nurses get it out for me.
Andrew using the ;eye gaze’ machine that he uses as his only form of communication. (Photo: Teri Pengilley)
“I am tired of explaining things to staff not with me all the time. I really appreciate the staff, who do everything to make me comfortable. There are some exceptional carers and nurses. We are getting me one to one care for some of the day.
“Thanks for buying our books. Every order makes me happy. I’ve done some newspaper work and you will see it soon. I need people to know about what MND does.
“I have an impression that the public doesn’t understand how uncomfortable and challenging the disease can be. This is partly because they are shown the ‘MND heroes’. Make a movie of me straining to reach the buzzer on the pillow with my head, when my body has moved the other way, and I am itching from overheating. MND patients have immense challenges every day, as do their families.
“Thank you for reading my blog in 2017, and I would like to wish you a great 2018.”