MND Association. Norfolk, Norwich and Waveney Branch

MND Connect

 

Accredited Site

About Motor Neurone Disease

 

 

What is MND?

 

Motor neurone disease (MND) is a name given to a group of related diseases affecting the motor neurones in the brain and spinal cord. It is a progressive disease; degeneration of the motor neurones leads to weakness and wasting of muscles. MND can affect how you walk, talk, eat, drink and breathe. MND does not usually affect the senses or the bladder and bowel. Some people may experience changes in thinking and behaviour, referred to as cognitive changes, but only a very few will experience severe cognitive change. MND affects people in different ways, so no two people will have exactly the same symptoms or experience of MND. Not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order. The rate of the disease progression is variable as is the length of survival time after diagnosis.

 

Although there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.

 

In recent years there is evidence to suggest the incidence of motor neurone disease (MND) is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase. The number of people living with MND is about 7 in every 100,000. At any one time there are typically around 55 people living with MND in the area covered by the Norfolk, Norwich & Waveney Branch.

 

Many people still don't know what is meant by MND. As a branch we aim to raise awareness of the disease via this website, our branch newsletter 'Fightback', local media and by word of mouth. We want everyone to know about MND and what it means for people living with the disease and their families, friends and carers. We hope they will want to join us in achieving the best standards of care to enable people to get the most out of life and aid us to encourage research.

 

Awareness raising can involve talking to groups, acting as the voice at meetings for people living with MND, using displays and leaflets, writing to MPs and making the case for service funding.

 

Once people find out about the impact of this devastating disease on families we know they will be keen to support the fight for better care and more research.

 

 

Research:

 

Research to find a cure or - at the least - effective treatments, is usually high on the list of priorities for people and families who have been personally affected by MND.

 

Every year a proportion of the money raised locally is directed specifically to research. Often people undertaking sponsored challenges decide that all or part of the money raised will go to research.

 

Many people living with MND play a vital role in research into the disease by taking part in treatment trials.

 

Some choose to make a highly valuable contribution to MND research after their death – by donating brain and spinal cord tissue.