Motor Neurone Disease (MND)

Leisure, holidays and travel with MND

How far leisure activities are affected by MND of course depends on the kind of symptoms each person has and how quickly they progress. Many people could still pursue their existing interests - for example, a man whose speech was unaffected still enjoyed regular games of golf with friends and a man with limited arm and leg movement continued to sing in a choir. Some found ways to continue favourite hobbies or activities despite physical difficulties, sometimes with the help of family and friends. A few people said they were not happy about taking to a wheelchair but were glad of the freedom it gave them to move around more easily and go on outings. 

People continued to take part in a range of other activities, including going to the gym, painting, music, cookery, creative writing, community volunteering and fund-raising, eating out, going to the theatre, local history societies and adult education courses. Many stressed how important they felt it was to keep active. At the same time, however, many had to give up things they enjoyed doing, and said how much they missed certain activities. Gardening and walking were often mentioned, but also various forms of sport, dancing, and general social activities such as eating out or going for a drink. Several people first noticed symptoms while they were doing the things they loved most, and the idea of losing such an important aspect of their life was sad. As one woman said, “Sport? That's a huge loss. It meant everything.”

Driving was another activity that both men and women missed, not just because of the independence it gave them but also because of the enjoyment. Some men in particular added that it was part of their identity. Two men we talked to had worked in the motor industry. Here one explains how important it was to him to continue driving. (See also Interview 28 - Phil's story).

A range of car adaptations can help people to keep driving - see Motability for advice, and 'Aids, equipment and adaptations for MND'.

Some said it was hard to find anything to take the place of previous hobbies. Others recommended taking up new activities, even if you were not very good at them or did not enjoy them particularly, to avoid getting bored and depressed at home. Some people found new activities they loved.

A few people felt they had reached a quieter phase of life and were content to live life at a slower pace. Some felt they had gained new insights as a result.

Holidays and short trips were important for many people. Many decided to take the chance while they still could to visit places they had always wanted to see. Travel to exotic locations or short trips within the UK was also a welcome distraction and a way to keep positive and active. Several people went on holiday shortly after diagnosis and found it helped them come to terms with what was happening. They advised others to do the same.

Some people liked to plan well ahead, treating holidays as something to look forward to and motivate themselves, while others were worried if they planned too far ahead they might not be well enough to travel. Views were mixed on how easy it was to travel abroad; several were positive about the help offered by airlines and hotels, while others felt it was too much hassle, as well as expense. One man felt disabled access could be easier abroad than it was in the UK. He had also bought his own mobile hoist to take on holidays. (People who have a feeding tube who are travelling abroad should contact the company providing their feeds to discuss having supplies delivered to their holiday destination).

Getting travel insurance was a major issue for many people, and it was sometimes unclear whether diagnoses such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy) posed a problem with insurance companies. The MND Association advises people to shop around for three or four quotations to find the cheapest. They also advise people to make sure pieces of expensive equipment are insured (whether travelling or at home).

Many people were very aware that having frequent holidays can become very expensive and that not everyone can afford it. However, one woman dependent on benefits explained that her local social services department had arranged and paid for a holiday for her and her carer in the Lake District. The MND Association had also helped one young man to visit Amsterdam.

Information sheets 12A to 12D on motoring, travel and holidays can be downloaded from the MND Association's website.

Last reviewed August 2017.
Lasy update
August 2017.

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