About > Motor Neurone Disease

What is Motor Neurone Disease?

The term Motor Neurone Disease, actually 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. It 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 (MND) 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 is not yet known, but ongoing research throughout the world is looking for causes.

Normal Reactions

The diagnosis of MND inevitably means the beginning of a new journey - one that, in all likelihood, you did not expect to be making, but in fact, you had already begun.

Normal reactions to learning that you or someone close to you has a serious illness include

• Shock
• Fear for the future
• Disbelief of the diagnosis
• Anxiety for loved ones and friends
• 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 what is happening to you

 

Some of or all of these feelings may overwhelm for a while and you need to work through them at your own pace. You may also find that you need to get the reality of the situation straight in your own mind first before turning to people for support. Others may 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. You may feel determined to face the disease head-on and fight it, or you may prefer to deal with it one day at a time.

Discussing and acknowledging feelings within the family is vital. Motor Neurone Disease affects not just the person with it 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. Bottling up feelings only leaves them to fester, causing problems in the long run.

Advice for families and friends

While feelings of anger, disbelief and anxiety are normal for someone diagnosed with MND, they are equally normal reactions for those 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 reaction as normal and that they too, find a source of support and help, whether from professionals or friends.
• Try not to over-react to any anger or frustration that may be directed at them.
• Know that any 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 them 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 friend has a serious, disabling illness that is not yet curable - does not mean giving up and doing nothing. Rather it means continuing to do as much as you can and into helping them maintain the best quality of life and independence

The physical effects of MND vary from one person to another, as does the rate of progression. There will be times when your 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 very important to help ensure the family maintains their individual roles, even if this means offering help with those everyday jobs.