Motor Neurone Disease (MND)

Work and career

Own work and career

Most people who talked to us had given up work, but some were still working and many had continued working for some time after diagnosis. Many of them talked about how important work was for them, both emotionally and financially. 

Clearly, the type and progression of each person's symptoms was important in deciding whether to continue working and for how long. But being able to stay at work also depended on other factors, including the nature of the work itself, the physical suitability of the workplace, how supportive employers were prepared to be, availability of aids and equipment, and the practicalities of travelling to and from work. 

Some people felt lucky to have a job they could carry on doing despite their symptoms, while others could not continue doing the same thing and either had to give up work or move to different duties if they had a supportive employer. The Access to Work scheme had helped several people by arranging travel and equipment, though a few reported some initial problems sorting out reimbursement for taxi fares.

A few people were worried about telling their employers or their colleagues. One person kept it secret for two or three years because his company had a reputation for making people redundant. However, most people said when they did tell their employers they were helpful and supportive, and some offered generous financial help with pensions, long term sick leave and paying people a full-time salary even if they went part-time. One person said his employer did not do much to help, but felt that was mainly because there was actually little they could do.

As MND is more common among people over the age of 50, some people had already retired before diagnosis. 

Others were able to continue working to retirement age or arrange early retirement. For some people, early retirement was quite welcome, offering a chance to do something else with their lives after a long career. On the other hand, some felt the diagnosis had cheated them of things they had been looking forward to in retirement.

Others wanted to stop work so they could spend the maximum amount of time with their family. One man commented that it was also a question of dignity and not wanting to have to get his work colleagues to help with personal tasks.

Deciding when to give up work had been a difficult decision for some people. Having to give up work left a big hole in many people's lives, and some found it hard to come to terms with the loss. Some were upset to feel they were no longer so strong and independent, and some disliked relying on benefits after working hard all their lives.

One woman originally thought she wanted to resign but found going back part-time really helpful both intellectually and socially. 

Carers' work and career

As Liz (above) suggests, having a partner or other close family member living with MND also has an effect on carers' working lives. As their relative becomes physically more dependent, carers who have not already retired may be faced with difficult decisions about whether to continue working, and how to balance their own needs with the demands of being a carer. Several people living with MND thought it was important for their partner to keep working. One commented, “He's still working, and I'm encouraging him, because I think that's important that he goes out every day, and he's no hobbies. He loves his work, so I think that's what he should carry on doing.” The wife of one man with MND said, “He wanted to get on with it his way. He didn't want me fussing about him. And to be quite honest I needed that escape as well.” Another woman regretted that she had given up work quite so quickly, as they have since found out her husband has a very slowly progressing form of MND.

However, combining work and caring could be tiring and stressful. Sometimes carers were worried about leaving their relative alone at home while they were out. As their relative's care needs increased, some people faced the dilemma of whether they would have to stop working, and whether they could manage financially. (The impact on carers' lives more generally is explored in 'Impact on family carers').

The MND Association provides a range of information sheets on benefits, entitlements and working with MND. They also have a Benefits Advice Service for people with or affected by MND.

Last reviewed August 2017.
Last updated August 2017.

 

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