Understanding dystonia and its management for health and social care professionals..
It is over 100 years since the first clinical descriptions of cases of dystonia were made. The study of this movement disorder has undergone a turbulent evolution, with huge shifts in the opinion of its causes. For many years it was treated as psychological condition (hysteria), thankfully now most dystonias are recognised as an organic neurological disorder (Warner & Bressman 2007).
Dystonia is an umbrella term covering a number of conditions affecting the eyes, face, neck, speech, limbs and trunk. It is a movement disorder characterized by involuntary and sustained muscle spasms and contractions that produce abnormal twisting postures or repetitive movements. In most cases it is a condition that affects the way signals in the brain stimulate the muscles to work leading to unwanted spasms. It can affect people of all ages and there is currently no known cure.
Dystonia can affect just one part of the body or several different areas. It is a neurological disorder affecting movement but not intellect.
There are at least 40,000 people in the UK affected by the condition that equates to 1:1500. Whilst there is currently no known cure in many cases it can be effectively managed with medication, surgery and other therapies.
There are several options for the treatment of dystonia but most offer symptomatic relief only. There are risks associated with most treatments and clinicians must try to minimise risk in the treatment plan chosen, including use of reversible treatments prior to any surgical or non-reversible drug treatments being considered. The ‘gold standard’ treatment for most focal dystonias is botulinum toxin injections into the relevant muscles to block the nerve action on the muscles.
Dystonia is a common neurological movement disorder and yet it often goes unrecognised by healthcare professionals as well as the general public. Living with dystonia can be stressful: it often causes significant pain and discomfort and has a major impact on work and social life. The involuntary muscle spasms can be very debilitating, painful as well as embarrassing and stigmatising. For these reasons it can have a very negative effect on the quality of life of an individual.
What is dystonia?
Dystonia is defined as involuntary muscle spasm which leads to sustained abnormal postures of the affected body part. Typically, the abnormal postures are not fixed, and slow writhing movements can occur (athetosis) where the dominant muscle activity switches from agonist to antagonist and back again. Tremor commonly occurs with dystonia and tends to affect the same body part. Dystonic tremor is typically jerky, variable in amplitude and worsened by particular positions of the affected limb and/or the task being undertaken (Edwards, Quinn & Bhatia 2008).