June is Motor Neurone Disease Awareness Month

MND affects the nerves in the brain and spinal cord, gradually stopping the messages they send to the body’s muscles. People with MND can find that it affects their movement, speech, eating and breathing, and can lead to muscle weakness, stiffness and wasting, making it harder for them to carry out everyday activities.

Local Hospice Care charity Phyllis Tuckwell cares for patients with MND, offering them therapeutic support, nursing care and medical advice to help them manage their symptoms and remain as independent as possible for as long as they can. Its physiotherapy exercise sessions help to strengthen patients’ muscles, and usually take place at the Hospice and Beacon Centre in groups of six to eight patients. These sessions also enable patients to get to know each other in an informal setting, and many form strong friendships. Sessions have taken place via Zoom during the pandemic, but Phyllis Tuckwell hopes they will be able to resume in person as restrictions ease.

Phyllis Tuckwell also offers relaxation therapies, where patients can learn breathing techniques and mindfulness exercises to help them manage feelings of stress and anxiety. Its seated Tai Chi sessions are specially designed for people with mobility problems, and their carers, and can help ease tension. “At the end of the class we were so relaxed,” said the wife of one of Phyllis Tuckwell’s MND patients, “he used to say that he was able to forget about everything, to just sit and not worry.”

Creative Therapy groups, which have also been held via Zoom during the pandemic, offer patients an opportunity find distraction from their illness, through drawing, painting or photography, with many finding inspiration in the natural world or from family and friends.

Many MND patients find joy in Phyllis Tuckwell’s Therapies through Nature sessions. During the pandemic these sessions were replaced by a ‘DIY Bag delivery’, where patients are sent the materials and instructions to create items such as ‘Christmas Pot Pourri’ and ‘Easter baskets’. Face-to-face creative sessions are due to restart shortly.

“These sessions offer patients therapeutic support which, alongside the medical and nursing care we provide, helps them to manage their symptoms and get the most out of life,” said Olga Monje-Fierro, Occupational Therapist at Phyllis Tuckwell Hospice Care. “MND affects different people in different ways, so we tailor our care to make sure it is appropriate for each individual person.”