Motor Neurone Disease (MND)

Getting a diagnosis of MND was a terrible shock for almost all the people we talked to. This might be mixed up with all kinds of other emotions, including anger, grief, disbelief or denial. However, a few talked about 'taking it in their stride', particularly if they had already suspected it might be MND, and some felt able to focus quickly on 'making the most of the time that I had left'. Over time, most people came to the view that developing a positive attitude was the best way forward, though some took longer or found it harder than others to reach that point, and some were still struggling. (See 'Philosophy, attitude to life and messages for others' for more about how people's thinking developed). Here we focus on people's first thoughts after diagnosis. 

Several people's first reaction was despair, and a period of depression. Some talked of being 'flattened' or 'in pieces', and feeling the future looked 'dark' or 'bleak', before reaching a calmer or more positive state. 

One man described how despairing he felt between getting the diagnosis and seeing a specialist. He stressed how important it is for people to have another appointment soon after the diagnosis to ask questions. At first he was too shocked to think what to ask.

Several people said they felt almost numb when they were given a diagnosis. Some just could not take in what they had been told, or did not really want to. A few even went straight back to work or went shopping after the appointment.

Some people found avoiding thinking about it too much helped them cope - as one man said, “I'm a person that's a bit like an ostrich, I bury my head in the sand.” Some could not believe the diagnosis was correct - one man said his young daughter would say, “I'm going to keep fighting this. I haven't got it. We'll find out what it is and then I'll get better.”    

 

A few people who had waited a long time for a diagnosis felt a certain relief at finally getting an answer. One man whose wife had MND said it was, “A tremendous shock on that particular day, but obviously I suppose you can call it pleased that we had got a definite diagnosis.” Another man said knowing what he was facing helped him fight it.

A few people had already suspected it was MND, sometimes because they had been doing a lot of reading and researching their symptoms on the internet, and sometimes because they had professional knowledge of neurological conditions. For some people this meant they were quite calm about the diagnosis.

Others said that even though they had guessed it might be MND, hearing it was still a shock, especially those with a family history of MND who had close personal experience of the condition and what it would mean for them (see Interview 22 - Liz's story, Interview 34 - Ken's story and Interview 39 - Liz's story). On the other hand, one woman with a family history explained her pragmatic attitude to the diagnosis she didn't want to hear' “I knew that the sooner I was diagnosed, then I could start making the most of the time that I had left, rather than wasting it pretending it isn't going to happen.” (See 'Possible causes of MND' for more information about the inherited or familial form of MND).

An occupational therapist who had worked with people affected by MND in the past described her reactions to her own diagnosis. 

While this woman did not want to be alone, others withdrew into themselves and did not want to be with others or talk. One man moved into the spare bedroom for 6 months. Some people felt angry and asked 'why me?” One woman was surprised that she had not really felt angry, although she did feel disappointed and frustrated. Others said it was like going through the different stages of grief, grieving for the loss of their health and independence, and the loss of future hopes and plans.

Some people were also immediately worried about becoming a burden on others, especially close family. (See 'Impact on family carers').

Views were mixed on the best way to be told the diagnosis. Some wanted a straight, honest approach, while others found this too blunt. As several people pointed out, there is no easy way to break such bad news, but doctors need to be sensitive to each person's needs and state of mind. Some people said it is possible to be honest and gentle at the same time. In particular, people talked about whether or not it helped to be given detailed information at this point about how long they could expect to live with MND. (See also 'Information needs'). Several said they thought hearing the diagnosis could be worse for relatives than for the individual themselves. One woman said she was shocked but her husband just said 'hey' and shrugged, because he felt there was nothing he could do about it. (See Interview 23 - Mike's story).

This man was in fact diagnosed with PMA (progressive muscular atrophy). Others who were told they had PMA or PLS (progressive lateral sclerosis) described some relief at this news, especially if they had previously been given a diagnosis of MND - as one couple said, “It's like a big reprieve.” (See footnote on less common types of MND). 

However, some found it hard to adjust to a different diagnosis. The wife of a man who was told he did not have long to live explained how that affected their decision-making. When they discovered he had PLS and had much longer life expectancy they regretted their previous choices.

Most people had someone else with them when they heard the diagnosis, and were glad to have the support. Others went on their own, and one woman said she would have preferred to be alone as it was so unpleasant for her daughter.

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 our resources page for links. This page also explains how to join an email forum for people with these forms.

Last reviewed August 2017.
Last updated August 2017.