About Motor Neurone Disease

Few disorders are as cruel as motor neurone disease (MND). Imagine a healthy and alert mind trapped inside a body that can’t move, that’s the devastating reality of MND. MND is a rapidly progressive, fatal disease that can affect any adult at any time. The cause of MND is unknown and there is no known cure.

It attacks the motor neurones that send messages from the brain to the muscles, leaving people unable to walk, talk or feed themselves. Around 5,000 people in the UK have MND at any one time. With no cure half die within 14 months of diagnosis.

It is impossible to convey in words the overwhelming and devastating nature of a disease which in as little as a year can turn an able parent, partner and employee into someone totally dependent on others for the simplest and most private actions we all take for granted.

Initial symptoms cause anxiety, bewilderment and fear which intensify as the disease takes hold.  Increasingly disabled, people with MND are presented with a series of battles: to find out what is wrong; to obtain appropriate and effective treatments and services; and to adjust to the constant losses and changes imposed by the disease. Loss of the ability to do things for themselves, isolation and exclusion from everyday life, loss of income, loss of autonomy, increasing dependence and impending death – these are just some of the challenges they face.

The Motor Neurone Disease Association

The Motor Neurone Disease Association (MND Association) was formed in 1979 by a group of volunteers who wanted to co-ordinate support, guidance and advice for people affected by the illness. It now has over 3500 volunteers and 150-plus paid staff, all dedicated to improving the lives of people affected by MND, now and in the future.

It is the only national charity in England, Wales and Northern Ireland working to help people with MND secure the care and support they need, while also promoting research into causes, treatments and a cure.

The MND Association has a vision of a world free of MND. Its mission is to fund and promote research to understand what causes MND, how to diagnose it and, most importantly, how to effectively treat it so that it no longer devastates lives.
It is also committed to making sure everyone with MND receives the best care, achieves the highest quality of life possible, and dies with dignity. This includes supporting the families and carers of people with MND as well.

Since 1990 the Association has developed a network of 19 MND Care Centres across England, Wales and Northern Ireland. The MND Care Centres offers a multi-disciplinary approach to patient care. An MND Care Centre Coordinator co-ordinates the care for people living with MND and is the main point of contact for patients, carers and healthcare professionals.

Additionally, the MNDA:

• Provides a national support and advice service, MND Connect
• Offers a befriending role to support individuals and families affected by the disease
• Provides specialist equipment and financial support
• Employs Regional Care Development Advisers who support people with MND through educating and influencing local Health and Social Care Professionals and services
• Raises awareness of the disease and works in partnership with all those who can make a positive difference to people living with MND, including MPs, civil servants and fundraisers

If you would like to join Sovereign Health Care in supporting the Motor Neurone Disease Association visit their website and find out different ways to get involved or how you can make a donation.

To find out more about Alistair and Patrick take a look at their blogs alistairtheoptimist.org and www.patricktheoptimist.org