About > Motor neurone disease

What is motor neurone disease?

The term motor neurone disease (MND) describes a group of related diseases affecting the nerves in the brain and spinal cord. These nerves known as motor neurones. As the nerves become damaged the muscles they control weaken and waste.

The muscles first affected tend to be those in the hands, feet or mouth and throat, depending on what type of disease it is. MND does not generally affect the senses so sight, smell, touch and hearing remain intact, as do the sphincter muscles that control the bladder or bowel. Other areas that are not usually affected are sexual function and intellect. It is not contagious.

Motor neurone disease is a progressive, life limiting disease and the rate of progression varies greatly from one person to another.

What are the symptoms?

Early symptoms are mild and include problems with walking, difficulties holding objects due to weakness of the hand muscles, and slurring of speech or a swallowing difficulty due to weakness of the tongue and throat muscles.

The nature of the disease is that it affects different people in different ways. In other words there is no clear-cut definitive symptoms that immediately indicate diagnoses.

What causes MND?

The causes of MND are not yet known, but researchers throughout the world are looking for cause.

Normal reactions

The diagnosis of motor neurone disease inevitably means the beginning of a new journey. Normal reactions to learning that you or someone close to you have a serious illness may include:

• Shock
• Fear for the future
• Lack of acceptance about the diagnosis 
• Anxiety 
• Grief for the loss of the future you expected
• Anger at the medical profession or family and friends
• Isolation because suddenly you feel different from those around you
• Intense sadness
• Relief that you finally know there is a cause for what has been happening.

Some of or all of these feelings may affect you at different times and it is important to work through them at your own pace. Some people need time to understand and process what is happening before turning to others for support. Some people find it easier to involve families and friends immediately. Gradually, though, most people will begin to review and rethink their life and plans.

One of the most difficult things at this time is to get a balance between keeping a positive attitude and accepting that you have a serious illness. 

Discussing and acknowledging feelings is vital. Motor neurone disease affects not just the person with the diagnosis but those close to them as well. Sharing the highs and lows with your family and close friends, and allowing them to do the same, will mean that you can help each other. Professional support can also help if you do not have family or friends, or wish to deal with your feelings and concerns without involving others. 

Advice for families and friends

While feelings of anger, denial and anxiety are normal for a person diagnosed with MND, they are equally normal reactions for people close to them. Family and friends may feel guilty both because they have reacted negatively and because someone they love and care about has been diagnosed instead of them. At the same time, they are trying to offer as much support and understanding as they can.

It is important that friends, families and carers:

• Accept their own reactions as normal and that they too find a source of support and help, whether from professionals or friends.
• Try not to over-react to anger or frustrations that may be directed toward them.
• Know that negative reactions from someone diagnosed with MND are usually temporary. Though there may be periods in the months and years ahead when these negative feelings overwhelm you or your family member/friend again, these are natural, normal, understanding and again usually transient.

Every family situation is different and every person diagnosed with MND must do what feels right and comfortable for them - be there and remain supportive.

Living with MND means continuous changes and challenges. Accepting the fact that your family member or friend has a serious,  illness that will lead to disability and cannot yet be cured does not mean giving up and doing nothing. Rather it means continuing to do as much as you can and into helping the person to maintain the best quality of life and as much independence as they can. 

The physical effects of MND vary from one person to another, as does the rate of progression. There will be times when your family member or friend will feel very frustrated due to not being able to do all the things they used to do but it helps to ensure their lives are kept as normal as possible.  It is also helpful to ensure that family members can maintain their individual roles as far as possible.