Testimony of Motor Neuron Disease Sufferer Werner van Zweel

It was a day in 2013 I will never forget. I was listening to the radio when it was reported that Joost Van der Westhuizen, who had been diagnosed with MND in 2011, was feeling very positive. The commentator said that Joost just missed being able to feed himself. I remember thinking how awful that must be. Never in my wildest nightmares did I think that I would be following in the debilitating footsteps of South Africa’s legendry Rugby Captain.

Bringing awareness to the disease

I am writing this account of my own experience in order to create awareness of what people with Motor Neuron Disease (also known as Amyotrophic Lateral Sclerosis, ALS) go through. I hope my story will help carers, friends, and families of sufferers of this terrible disease to understand some aspects of the illness, particularly the emotional perspective.

A ‘wretched’ disease

“I was not able to hold back the tears