John was diagnosed with Motor Neurone Disease (MND), a disease which wastes muscles but which spares the mind. It is a daunting combination.
Sadly, the bulbar form of MND eventually removed John’s voice and his ability to swallow. However, with ARCOS’ help and training over a two year period prior to this, John learned 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 taught 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 a speech generator device to enable him to keep communicating after his voice was gone.
When John died, his family kindly established the John Matthews Fund at ARCOS. Donations ensure that others can benefit from the Facial Oral Tract Therapy (F.O.T.T.) he 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.
ARCOS continues to provide F.O.T.T. training for individuals and their carers as well as professionals
If you would like to speak with someone at ARCOS about our support please contact admin@arcos.org.uk or phone on 01684 576795.
We offer a multi-sensory environment for calming relaxation and sensory stimulation. Children with a variety of disabilities attend.
Through specialist multi-disciplinary therapies, rehabilitation activities, and emotional support to make a difference and changing lives.
We provide training in understanding best practice care and the latest technological support for a range of conditions for healthcare professionals.
ARCOS provide physical and online training, information, and advice. You also gain a network of peer support to assist you through your journey.
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