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Real life stories

John's Story

John Matthews was diagnosed with Motor Neurone Disease (MND), a disease which wastes muscles, but which spares the mind.

It is a daunting combination. 

“With keen mind and open eyes, we watch ourselves die.” wrote Dennis Kay.


The bulbar form of MND eventually removed John’s voice and his ability to swallow. But during the two years leading up to this point, with ARCOS’ help and training, he had learnt to conserve energy, economise on effort and increase his “core stability.” 

This is the foundation for breathing, swallowing and also for protecting the airway by coughing when something “goes down the wrong way”. He was able to develop strategies to help himself swallow as effectively as possible and he and his wife learnt how to deal with choking.

As the muscles were inevitably more affected, ARCOS’ equipment loan library provided an amplifier for his voice and then a Lightwriter, an electronic voice aid.

When John died on 19th July 2006, his family established the John Matthews Fund at ARCOS Donations went to ensure others could benefit from the Facial Oral Tract Therapy (F.O.T.T.) he had received.

While there is, as yet, no cure for Motor Neurone Disease, there are practical steps that can be taken to tackle some of its symptoms and the feelings of helplessness likely to follow diagnosis. 

If you would like to speak with someone at ARCOS about our support please contact or phone on 01684 576795.