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 that point, 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 enabled to develop strategies to help himself swallow as effectively as possible and he and his wife had learnt how to deal with choking. They received guidance in keeping the mouth comfortable and wet, by moving the tongue to stimulate saliva flow and using artificial saliva when tongue movements became too weak.
Adequate nutrition and hydration are important. Thin liquids were therefore thickened to make them easier to control and his diet was enhanced by supplementary foods of manageable consistency. Insertion of a gastrostomy provided a safer route than eating by mouth.
At first, this tube into the stomach was a reassuring back-up to meals by mouth, eventually, it replaced eating and drinking. However, John was able to enjoy a sip of his favourite white wine for longer than anyone had dared hope.
Initially, John and his family found it hard to believe that his voice and speech would deteriorate and disappear. He had an enormous sense of humour, he was witty and full of fun. He was a magistrate.heavens above, his voice was so very much part of him and his personality.
As the muscles of breathing became inevitably more affected, ARCOS’ equipment loan library provided an amplifier for his voice and then a Lightwriter. This is a portable communication aid with an electronic voice output that will “speak” out typed messages that can also be read on a small screen. John’s grandchildren were intrigued and fascinated by the Lightwriter and all the family had had time to become used to the device before he became unable to speak and had to rely on it for his communication. ARCOS’ policy is to provide information and equipment ahead of “crisis time”.
With characteristic generosity, John and Rosemary welcomed a film crew into their home and contributed to a documentary about the work of the charity ARCOS on 14 th July 2006. He died just five days later on 19th July 2006.
In The Times’ obituary notice, his family asked that donations be made to the John Matthews Fund at ARCOS in lieu of flowers. Over the next couple of weeks, more than £3,000 was contributed to the fund, established by John and his wife Rosemary in 2005. Donations continue to arrive. The donations are testimony not only to the enormous affection for them of their many friends but also to a recognition that John Matthews benefited from the Facial Oral Tract Therapy (F.O.T.T.) he received at the ARCOS Centre in Malvern.
While there is as yet no cure available 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. F.O.T.T. aims to help maintain function for as long as possible and to delay some common secondary effects of symptoms. These include anxiety, choking and inability to speak. The John Matthews Fund exists to provide therapy, equipment and support for individuals and their families. The ARCOS approach is designed to enable people to acquire understanding, skills and confidence in managing the deterioration of eating, drinking and communication. These are the functions particularly attacked by the bulbar form of MND that affects about 25% of those with the disease.