Good Practice Guide


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Dietary support

A number of types of dystonia can affect nutrition:

  • Dysphagia (difficulty swallowing) can arise from oromandibular and lingual dystonia when it can be difficult to chew or move food around the mouth to prepare it for swallowing
  • Dysphagia can also sometimes be a side effect of botulinum toxin injections for cervical dystonia. It is usually a short lived problem but can be frightening when it happens.
  • Some people, particularly children with generalised dystonia, may have difficulty with swallowing food safely. They may also use more calories as a result of the muscle spasms.

Dystonia can also lead to an inadequate diet:

  • Those who have excessive movements may also find it almost impossible to keep still whilst eating, making hand to mouth feeding very difficult. As a result, finger foods and feeding cups are often used but these may not provide enough nutrition.
  • Texture modified diets (e.g. puree diets) may be recommended due to dysphagia and can have negative impact on nutritional status due to their poor nutritional content.

Nutrition can be monitored using a screening tool (e.g. MUST) during home/clinic visits or inpatient admissions. A referral to the dietitian should be made if weight loss has occurred or if malnutrition is a concern. A dietetic referral is also required when dysphagia is present.

The dietitian can suggest appropriate use of texture modified diets, food fortification and nutritional supplement drinks (e.g. Build Up™, Complan™, Ensure Plus™ and Fortisip™) to supplement diet.

Occupational therapy

Occupational therapy can help people with dystonia with practical everyday tasks, enabling them to live as independently as possible – at home, in employment or in education. Support provided can include identifying ways problematic everyday tasks can be done differently, advice on equipment and referral to other services. Examples of equipment include body suits to assist with posture and transportable back/neck supports.

Specialist equipment

Patients should be discouraged from choosing equipment without being properly assessed as it can result in the equipment not helping or causing more problems than it solves. This is particularly the case with mobility aids and wheelchairs if the user has postural problems. The equipment may seem comfortable at first but it may encourage fixed postures and muscle tightening, leading to more
body deformity.

Podiatry

Patients with dystonia may experience gait problems and struggle to look after their own feet due to mobility and dexterity issues or to problems caused by uncontrollable muscle spasms. Podiatrists help them address these problems using foot orthotics to assist with gait problems.

Genetic Counselling

Adults who have genetic forms of dystonia and are considering having children may have concerns about their children developing dystonia. They may decide to seek genetic counselling to help inform their decision making. Also where parents have an infant or young child who has dystonia which may have a genetic cause, they may want to seek genetic counselling with regard to future siblings. If they choose to have genetic counselling they should seek the advice of their neurologist/paediatric neurologist and ask for a referral to their local medical genetics service. Referral of children with idiopathic dystonia can be helpful as geneticists can sometimes aid diagnosis.

Social support

Dystonia can cause difficulties with all or some of the activities of daily living. Where this occurs, patients should be referred to social services for support e.g. domiciliary care, equipment or home adaptations.

A number of other specific social interventions may also be required:       

  • Visual impairment due to blepharospasm. A consultant ophthalmologist should complete an assessment to determine the patient is sight impaired (SI) or severe sight impaired (SSI) and a certificate issued and sent to Social Services. Advice about visual impairment can be obtained from the Royal National Institute for the Blind or Action for Blind people.
  • Patient wishes to continue driving. Neurologist or dystonia nurse to advise if condition  stable enough. If so, confirmation to DVLA.
  • As appropriate, young people with dystonia should be referred to Special Educational Needs (SENCO) support.

Complementary therapy

People with dystonia often seek out complementary therapies and report varying degrees of benefit (Lim 2007). Formal studies into the effects of these therapies have been limited, so no recommend-ations can be given. However, therapies which help to increase relaxation, relieve stress and calm symptoms are felt by some patients to be useful in managing their condition (Lim 2007).

In a Dystonia Society questionnaire, mindfulness (autogenic training) was reported helpful by 65% of those who tried it. Other therapies tried include acupuncture, chiropractice, homeopathy, hypnotherapy, osteopathy, reflexology and the Alexander Technique. All were reported helpful in the range of 15–30% of those who tried them.

 

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