What is MND?
Motor Neurone Disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that relay information to the muscles of the body that organise and control all our daily activities. When the nerves that supply these muscles begin to die, the muscles start to waste away and eventually stop working. MND affects different people in different ways – for some the nerves that control breathing and swallowing as well as speech are affected first. For others it targets the arms and the legs affecting their mobility and ability to carry out the activities of daily living. In all cases, the disease is progressive and life shortening with the average survival time after diagnosis being 2-5 years.
It is often said that MND is not an incurable disease, it is just an underfunded disease. Currently the government invest only £3million a year into MND research, a mere pittance when you consider that one in 300 people will be diagnosed with MND across a lifetime and there are around 5,000 adults living with the disease in the UK at any one time.
MND and Us
After noticing problems gripping things with his left hand, Bob was diagnosed with MND in October 2020. For a fit and active 52 year old this was devastating news. After a few weeks, as we as a family started to adjust to a new reality and a different future, the realisation came that we could not and would not let Bob’s diagnosis take over our lives and that we would make the most of every day. We were determined that our days would not be defined by MND and that we would carry on as normal for as long as possible, after all a positive mental attitude can carry you far.
Positivity comes in many forms, a ten mile hike completed, pushing through the mud on a mountain bike, a well baked cake, the support of friends. For us it also meant being part of a larger community trying to find a treatment for MND.
Unlike Scotland and England, currently no active research into MND is being carried out in Wales, with West Wales patients being particularly poorly served. To make matters worse, as health is a devolved government issue, gaining access to such centres across the UK has proved almost impossible. Without access to facilities such as the Euan McDonald Centre in Edinburgh or the Motor Neurone Research centre in Oxford, it is almost impossible to enrol on a clinical trial and to contribute to finding a cure for MND. To date, this has been our greatest challenge in learning to live with the disease.