Motor neurone disease must rate as one of the crueller diseases, gradually weakening and wasting away the muscles of the body but leaving the functions and alertness of the brain untouched.
It was a disease to which world-renowned and inspirational physicist Stephen Hawking recently succumbed, having been diagnosed with a rare and slow-progressing form at the age of 21. This gradually paralysed him over the decades until his death at the age of 76.
Although it’s a depressing prognosis, there is certainly no reason why you should give up on life.
Jerseyman Tim Phillips, who was diagnosed with motor neurone disease ten years ago, has demonstrated this, facing each day with an inspirational attitude, a perpetual smile on his face and a willingness to take on new challenges.
The son of Tess and Johnny Phillips who ran Multina Riding School, it was not surprising that Tim developed an early love of horses. He became an accomplished equestrian competing and winning awards at local events.
When he was no longer able to ride, he continued his association with the sport designing and making show jumps, some destined for the local branch of the BSJA and for the St Lawrence charity horse show. His latest project is a jump for the BSJA in memory of past chairman Jane Sebire, who died at the end of last year.
This will be presented at this month’s Country Horse Show – an event that Jane helped establish over 60 years ago with the venues including her own land at Bon Air Stables, St Lawrence. This year it will be at the BSJA showground on 19 and 20 May.
With a loss of manual dexterity, Tim continues to come up with the designs but now relies on his entourage of carers and volunteers to do the work.
‘He supervises us, gives us orders and makes sure we do the job properly,’ Aileen Landers, his main carer, laughingly explained. ‘Everything is done from scratch. We are in Tim’s workshop most days and enjoy helping him.’ This feeling is shared by others including former carers Sue Carré and Julie Turmel who voluntarily still come back and help.
Although now unable to talk, Tim has found other means of communicating. ‘We can understand a lot from the expression in his eyes and he uses a pad to spell out words on a screen,’ said Aileen.
This also enables him to connect with apps such as Facebook which he uses to message his friends and family, including his daughter Jade in Ireland who recently provided Tim with a grand-daughter. Time is also spent watching DVDs, listening to music and watching TV including the racing channel which enables him to keep an eye on the progress of his son, Tim junior, who is a Newmarket-based jockey.
Despite the limitations that come with his condition, Tim has a sense of positivity and lives each day to the full. With the help of a wheelchair, he is able to visit the nearby supermarket and pub and enjoy outings. His special highlights include the tool show at Romerils and a trip to Guernsey with his mum Tess each summer to watch riders at the Guernsey Horse of the Year show.
He has also successfully applied to surf this summer with Healing Waves – a charity set up to enable any individual with a neurological or physical condition to realise the benefits of the ocean.
Tim fully appreciates that it is only through the help of his support team that he has been able to remain at home for the past ten years and make the most of opportunities. ‘I would like to thank everyone for the good work they do,’ he typed on his screen.
This includes his family, carers, social workers, his family doctor, Dr Robert Hurry; consultants, Dr Howard Gibson and Hamdi Amar; the Jersey branch of the Motor Neurone Association and the team members at the physiotherapy department at Overdale – Sally Lyons, Rachel Spottiswoode, Julie Le Moignan, Zoe Langlois, Erin Gaskell and Katie Legrand, who Tim visits every Wednesday. Once he has returned home, these appointments are followed by a full top-to-toe massage from Gill Jones which benefits him greatly.
Although Aileen from Gentle Care Nursing Agency provides most of the daytime home cover, his mum Tess takes over some evenings and mornings, assisted by a call monitor in her bedroom. Tim also has the back-up of alarms linked to the Ambulance station and Fire Service.
An excellent cook, Tess prepares meals and reveals that her son has a good appetite. He particularly likes food that is spicy, served with sauces or soups which are easy to digest.
‘He eats most things but everything has to be finely cut,’ she explains. ‘He also has to break between mouthfuls for a drink so meals can take up to two hours.’ However she adds that Tim is no bother. ‘He is set in his ways and he knows what wants.’
Over the years, the Jersey branch of the Motor Neurone Association has been able to give Tim and his family a great deal of support including helping with transport to appointments and outings and contributing to the cost of specialist equipment. This has included a cough assist machine and non-invasive ventilation to help with breathing and a body brace to keep Tim sufficiently upright to eat and to move from his bed to his wheelchair. This became essential after Tim broke his back and pelvis in separate falls.
Representative Julie Le Mottee explained that the association is run purely by volunteers and relies totally on donations and fund-raising events. She is not aware exactly how many patients there are in Jersey as not everyone necessarily seeks its assistance. However, for those who do, the aim is to try and help them stay in their own home.
Life is certainly not easy for Tim and there have been setbacks but currently his condition is stable. ‘He always bounces back and doesn’t let anything faze him,’ said Aileen. ‘He has a good sense of humour and doesn’t miss anything. I have never met anyone like him. His mum, who is in her eighties, is also amazing’.
Praise for Tim’s attitude to life is also given by Sarah Keen, Clinical Nurse Specialist at the Neuroscience Department at Westmount Assessment and Rehabilitation Centre. She commented, ‘since diagnosis Tim has taken every hurdle that he has come across with amazing strength, tenacity, and resilience’.
