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The thief that steals Left: Mark and Fiona Stanton
Sporty 39-year-old Mark Stanton was out jogging while on holiday when he cricked his neck. On return he had physio, which sorted out his neck but not the tremors he was beginning to experience in his left arm. His physio suggested going to the doctor. Ten months later, he had the diagnosis of Motor Neurone Disease (MND). Two to three people in every 100,000 (that’s roughly the population of Crawley) are diagnosed with MND - a progressive disease that What is MND? MND is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. It affects each individual in a different way as there is no pattern or predictability to the disease. Although incurable, it can be treated. Interventions may prolong survival but they will not reverse or arrest the disease progression.
attacks the motor neurones, or nerves, in the brain and spinal cord. “It is a roller coaster, but I try to take every day at a time,” says Mark. “Mark has a lot of inner strength,” adds his wife Fiona. “The disease is like a thief that steals from you a bit at a time. So you lose something and have a down period, then you pick yourself up again.”
With the sunshine streaming through the patio doors of his Folkestone home, Mark describes some of the landmarks in his five-year roller coaster journey with MND - stopping playing football, moving and adapting his house, getting a scooter to help with getting around, then a wheelchair. Mark is now preparing to stop work as a print manager at MAF (Mission Aviation Fellowship). As Mark and Fiona talk, MND Specialist Nurse Chrissie Batts is gently encouraging them.
Chrissie works with Dr Karlsson, Consultant Neurologist, to manage and co-ordinate the East Kent MND service. She is the first point of access for all patients and their families. Following initial diagnosis she visits them at home and continues to visit at a mutually agreed frequency - sometimes at home, sometimes in the office - whatever is the right fit for the person she is looking after.
For Mark and Fiona, Chrissie brings specialist knowledge of both the disease and the systems and organisations that they need to know about. She makes reassurance, advice or advocacy just a text or a phone call away. Every month, representatives from all the professions who provide services for MND sufferers in east Kent meet to discuss each patient so that all professionals - from Speech & Language Therapy, Occupational Therapy, Physiotherapy, Dietetics and Adult Communication
Above: Chrissie Batts and Assistive Technology are aware of the changing needs of each individual. Chrissie has also built links with all professionals at the Pilgrims Hospices through collaboration and attending their multi-disciplinary meetings. “This multi-disciplinary approach provides expert knowledge so we can manage patients’ conditions and achieve the best quality of life for every one,” says Chrissie. n Shortly after being interviewed for this article, Mark sadly lost his battle with MND after a courageous five year fight. 5