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Supporting people affected by Charcot-Marie-Tooth disease.

Occupational therapy

An occupational therapist can help people with CMT by providing:

  • environmental assessments – at school, work, home
  • equipment recommendations
  • fatigue management
  • career advice
  • workplace assessments

There is an old saying that a physiotherapist will teach you to walk, but an occupational therapist will teach you to dance! Occupational therapists work with people of all ages, including children, – and with a range of difficulties – to help them achieve their full potential.

OTs are people-centred and their goal is to promote and enable independence. They will assess how well you cope with activities of daily living (ADLs), listen to your needs concerning personal care, leisure, work, study, travel and household management and advise on options for you. Their assessment may involve breaking down the activities you find hard into their component parts.

For example, if you have CMT you may struggle with everyday activities like getting dressed, opening food packets or holding a pen to write. Your OT will work with you to find solutions to these problems to help you remain independent. Solutions may come in the form of trying some adaptive equipment to compensate for your difficulty, or by working on activities to help maintain strength in certain muscle groups.

OTs are also skilled in making splints for hands. People with CMT may develop slightly clawed fingers and experience some muscle wasting in their hands. A hand splint will help to keep your hand in a good position in order to minimise pain and muscle contractures.

How an OT can help

At various stages of CMT an OT may be able to offer expertise in areas such as:

  • individualised fatigue management programmes to understand the nature of your particular fatigue within your daily life
  • how to more effectively prioritise and manage your time to achieve the things you want to do
  • strategies to improve sleep and good quality rest
  • relaxation as a coping strategy – for example as a stress or pain management technique
  • ergonomic information about effective joint protection and energy conservation strategies
  • hand-care techniques including provision of hand exercise programmes, fabrication of custom made hand splints to aid daily tasks, pain management and hand positioning
  • adaptive equipment from small aids to major adaptations for helping you at home or in your workplace
  • signposting and referring on to agencies to help with the cost of purchasing daily living aids and adaptations
  • information on employment legislation and your rights within the workplace
  • graded return-to-work and remaining-in-work programmes
  • care assessments for direct payments or home helps
How to get an OT appointment

People with CMT often find it most helpful to see an OT if their physical ability changes and they find it harder to do things that they had previously been able to manage with little effort, such as opening a jar.

OTs work in various settings including community teams, social services and hospitals. The health professionals involved in your care, including doctors, nurses and therapists, can refer you to an occupational therapist if this is required. You may also be able to self-refer to some therapy services – so it is always worth giving your local social services a call. They will explain the correct process for your area. You can also see an OT privately if you are willing to pay. Discuss your concerns with your GP or medical team to identify the services you need.

Depending on where you live, the equipment recommended by an OT might not be available on the NHS or through social service and may have to be bought privately. If you have difficulty paying, your OT may be able to advise you on seeking financial help.

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