Motor Neurone Disease (MND)

Being told they had MND was a devastating blow for almost everyone. Many were shocked, saddened and became depressed; some could not believe it, and many asked themselves “Why me?” (See sections on 'Immediate reactions to diagnosis' and 'Emotional lability, depression and low mood with MND'). However, most people felt it was important to find some way of accepting and adjusting to what was happening to them if they possibly could, both for their own peace of mind, and for the sake of their families. They wanted to encourage other people with the condition not to give up and to realise it was still possible to get a lot of enjoyment out of life. One mother with an inherited form of MND said she wanted her children to have a positive image of life with MND, in case they developed it when they were older (see Interview 22 - Liz's story). A young father who was struggling with depression hoped others would fare better than him.

Of course trying to be positive was not necessarily easy, especially when progression was more rapid. The partner of a man with bulbar onset MND said, 

“People come to us and say, 'Oh, gosh, you're doing brilliant, absolutely brilliant.' It takes a lot to be brilliant, do you know what I mean? Because it can get really, really distressing, can't it? But positivity, really, is what keeps us going.” 

Some people took longer than others to reach a calmer or more positive attitude, and some felt they were still struggling. One man said he cried every day for 6 months, before he could say to himself “Enough is enough. I've got to try and stay positive.” (See Interview 32 - Vim's story). Many people said they still had bad days, even though they tried to keep positive most of the time. We talked to several people who had been recently diagnosed who were still shocked and upset, but others felt too raw to be interviewed at this stage. For example, one man who contacted us thought for several months about taking part, but in the end decided he was emotionally not ready to talk about it as he still felt so destroyed by the diagnosis eight months on. 

Several people who did talk to us had experienced quite prolonged bouts of depression, feeling unfairly robbed of a future. (See 'Emotional lability, depression and low mood with MND .') Not everyone can come to terms with MND or even wants to. One woman said that her husband still found it very hard to meet people because he hated what the condition had done to him. 

“He didn't want to stay in contact with old neighbours and this kind of thing, because he really didn't feel comfortable. He was such a big strong man, and suddenly he sees himself as not that at all. He sees himself as less of a man, which he isn't. Because anybody who does see him says how well he looks…But he feels, and that's so important to him.”

A few people, especially some who were older when diagnosed, had reached a degree of acceptance. Some looked back thankfully at a good life, and many contrasted MND with life-long disabilities, or with illnesses such as cancer which might involve more pain or unpleasant treatment. Some felt their experience had given them new insights and a different view of life, including one man in his sixties who said, “I'm not disappointed, I'm happy. In fact I think the challenges I face are making me a better person.” 

However, some people, both young and old, remained angry and depressed. One woman whose 81-year-old father died of MND was critical of what she called the 'grin-and-bear-it philosophy'. Her father was very afraid of death, was profoundly depressed by his inability to speak or move, and remained unable to come to terms with what was happening. She said'

“He was always completely there, completely aware, completely able to imagine and think about his situation. And excessively bored, and all day and all night - sleep doesn't come quickly to somebody who hasn't moved, you know. They're not tired. So it was like disappearing in quicksand over six months, taking that long, and knowing what was coming.”

While many people advised others that the best strategy was to face what was happening and accept it, others found accepting their diagnosis hard and said their way of coping with MND was to try to ignore it or deny it. This was especially true of several younger people, including those with children. Denial worked very well for some people; others said it helped them cope for a while, but was hard to maintain.

People recognised that offering advice to others was difficult, partly because of different personalities and attitudes. As one woman said, 

“You just have to get on with it in your own way. There is no right or wrong way. It's what's right for you. And people might say, “Well, I wouldn't do it that way.” But you have to do it your way.” 

Offering advice was also difficult because the condition affects people in such different ways. In particular, some people with PLS (primary lateral sclerosis) and PMA (progressive muscular atrophy) felt they could not presume to advise people with other forms. On the other hand, the very fact that the condition was so variable could be a cause for hope. (See footnote on less common types of MND).

At the same time, many people did want to offer encouragement and advice from their experience. Adopting a positive attitude, keeping life as normal as possible and getting the most out of every day were at the heart of this advice. However, very different strategies were suggested as the best way to achieve this. A key dilemma was how to deal with the repeated adjustments needed as the condition progressed. Some felt it was best to put it to the back of your mind, not think too far ahead, and deal with challenges as they arose. An alternative approach was to actively accept the condition, adapt to it, find solutions and plan ahead - for example anticipating what equipment to get in place. In practice, many people found they had to strike a balance between these approaches that suited them.

Some adopted more of a fighting approach, challenging the condition and refusing to let it get them down. 

Keeping occupied and busy helped many people, although some found it hard to adjust to the loss of particular activities. As one woman said, “Sport? That's a huge loss. It meant everything…It's a huge loss of social life.” (See also sections on 'Leisure, holidays and travel with MND' and 'Work and career'). Some people suggested treating key events as milestones to look forward to, such as family weddings, trips or seeing children through school years. They felt this boosted morale and motivated them to keep going.

Many people commented on the importance of good support, from both family and professional services, in maintaining morale. They advised people to be willing to ask for and accept help, and many people recommended getting actively involved in their local support group. (See 'Support groups and meeting others with MND'). One woman said “Life with MND isn't a bed of roses but it is bearable if you have the right support and a positive attitude.” Another said it was only when the care system broke down occasionally that her normally positive attitude was hard to maintain.

Accepting help and adapting to changing levels of independence is also discussed in sections on 'Mobility, arm and leg weakness with MND' and 'Aids, equipment and adaptations with MND'. 

Footnote: less common types of MND diagnosis

A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability. For further information about the symptoms and progression of these forms, see the MND Association's website.

The MND Association provides a range of information sheets, including 2C: Primary Lateral Sclerosis and 2D: Progressive Muscular Atrophy.

The MND Association also hosts an online forum for all people living with or affected by MND.

Last reviewed August 2017.
Last updated August 2017.