Occupational therapy and Duchenne muscular dystrophy

Occupational therapists play a very important role in the management of children with Duchenne muscular dystrophy.  Because the deterioration is stereotyped it can be divided into three predictable stages. However, as the rate of deterioration is variable, it cannot be linked to age. The stages are, therefore discussed in relation to the level of disability.

The information below was originally written in 1999 as a chapter to be included in a book. A shortened version can be found in 'Occupational Therapy and Children' published by Whurr Publishers Ltd 2002.

Minor amendments and updates have been made for this web version, which has been split into several sections for convenience. If you prefer to download the complete chapter as one document, please scroll to the bottom of this page.

Introduction

You can find out some general information about Duchenne muscular dystrophy from this introduction.

Find out more about Duchenne muscular dystrophy

Occupational therapy input

As noted above, occupational therapists have a very important role in the management of boys with Duchenne muscular dystrophy and because the deterioration is stereotyped it can be divided into three predictable stages. However, as the rate of deterioration is variable, it cannot be linked to age. The stages are therefore discussed in relation to the level of disability.

For each stage, the help needed can be divided into:

• mobility
• school
• home, including emotional support and (in the later stages) medical/care support.
  

Early stage

The early stage covers diagnosis to difficulty in climbing stairs.

Find out more about the early stage

Middle stage

The middle stage covers difficulty in walking to use of powered wheelchair out of doors.

Find out more about the middle stage

Late stage

The late stage covers use of indoor/outdoor powered wheelchair to terminal stage.

Find out more about the later stage

Leisure

Leisure is equally important, and a discussion of the appropriate activities for all the stages is included as a separate section.

Find out more about leisure activities

Summary

Working with boys with Duchenne muscular dystrophy and their families is very rewarding for an occupational therapist (whose skills and expertise will be invaluable in increasing the boy's independence) thus making life easier for his parents and carers and, even more importantly, ensuring that the quality of life enjoyed by other children is shared by boys who are affected by this very disabling condition.

The Muscular Dystrophy Campaign offers a wide range of literature and employs information officers and MDC Care Advisors, who can be contacted on 020 7720 8055 if any advice is needed.

References

To see the list of articles and sources referred to in the articles, download the following document: OT_DMD_References.doc (23 kb)

Useful addresses

To see a list of addresses of groups mentioned in the articles, please download the following document:
Occupational therapy and Duchenne muscular dystrophy - useful addresses (25 kb)

The whole chapter

If you prefer to view the complete chapter as one document, click on the link below:
Chapter in full (135 kb)

Co-Authors:

Terry Robinson, Neuromuscular MDC Care Advisor, Addenbrooke’s Hospital, Hills Road, Cambridge CB2 2QQ.

Jenny Tuckett, Paediatric Occupational Therapy Service, Gwent Community Health NHS Trust, The Children’s Centre, Nevill Hall, Brecon Road, Abergavenny, Gwent NP7 7EG.

Philippa Harpin, formerly National Occupational Therapy Advisor, Muscular Dystrophy Campaign.