Occupational therapy and Duchenne muscular dystrophy - leisure activities

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Care must be taken to ensure that students in mainstream schools do not become socially isolated from their unaffected peer group, because it may be harder to maintain interaction with their peers than in a special school.

Therapists should encourage parents to see the direct benefits of leisure activities, and not only as secondary needs to education and physical treatment. The pursuit of hobbies and interests will give the child or teenager pleasure and enjoyment and may help overcome feelings of apathy and depression. The child should be encouraged to develop new skills while at the same time being realistic about present and future functional abilities.

Children should be discouraged from taking part in any repetitive muscle-building type of exercise that is likely to damage muscle tissue further.

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Playground activities for young children

Affected children should be encouraged to take part in the everyday activities of childhood, within the limit of their functional ability. In the early stages, lower limb muscle weakness makes such children unable to hop, jump, skip, run or walk distances, as their unaffected peers can do.

The child with Duchenne muscular dystrophy may have problems in riding a tricycle or playing on apparatus such as slides or swings. These difficulties can limit social interaction with the peer group, both in and out of school, and the level of fatigue can lead to social isolation.

Swimming

Swimming is an excellent all-round activity, providing exercise and fun. It is important that a child with Duchenne muscular dystrophy should learn to swim on his back, because a suitable float can support the back of his head when he can no longer lift it. The swimming pool must be accessible, with a suitable hoist for the later stages, in addition to the provision of appropriate changing facilities.

Horseriding

'Riding for the Disabled’ groups exist in many areas; riding is not only enjoyable but also encourages good balance and posture.

Fishing

It will be necessary to find a suitable venue, where it is possible to get a wheelchair up to the water’s edge, and to use a clamp attached to the frame of the chair to hold the rod.

Pets

A number of young men with Duchenne muscular dystrophy have enjoyed the help and company of a dog trained by ’Dogs for the Disabled’.

Breeding small animals

Suggestions are marsupials and rabbits. If the animal is to be taken out of its cage it must be a pet that is relatively passive. Keeping hens is also particularly suitable, and rearing chicks with a broody hen, or hatching eggs in an incubator, adds variety to an interesting hobby.

Model making

Many boys are very creative and retain the fine finger movement involved in assembling models. If these are remote controlled, it is important that they are cars or boats, and not planes, as it will be difficult to maintain the head control needed to look up into the sky.

Computers

Computers and computer games have enhanced the leisure activities of many disabled children. The Internet increases the information available to users, and email offers social interaction with others sharing the same interests.

In the late stage, severe upper limb weakness may cause problems with the use of a conventional mouse/keyboard, and voice-activated software or finger pad-control of an on-screen keyboard may be an appropriate solution. “The Golden Freeway” provides personalised access to the Internet for boys with Duchenne muscular dystrophy, and their families. This includes computer equipment, training and support, a range of condition and family specific resources, and the recent setting up of an Internet service provider.

Photography, graphic design and animation

These can also be accessed on the computer via special design programs.

Painting and drawing

Many boys are particularly artistic, and fine-detailed work on small pages (which require minimal arm movement), is very suitable and can be sold as a means of employment or to raise funds.

Music

Listening to, and developing an interest in music of his choice can provide the child with great pleasure; outings to concerts can be very rewarding to the whole family, if interests are shared.

Youth clubs and organisations

Opportunity should be given to join groups such as PHAB clubs and organisations such as Beavers, Cubs and Scouts, as it is important to provide as many different experiences as possible. These activities are an excellent way to encourage children to mix socially with their peers, to develop new interests and hobbies and to increase their independence, particularly when they go away to camp, for example.

Cultural interests and outings

Improved access allows disabled children the opportunity to visit cinemas, art galleries, theatres, museums and libraries.

Holidays

Specialist organisations or centres for young disabled people often provide activity based holidays.

June 2006 - we are currently updating our Holidays factsheet.

Sports clubs

Bowling alleys and spectator sports (particularly football) provide excellent interests. There are a growing number of wheelchair football clubs too.

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