The Dystonia Society is conducting another annual Dystonia Awareness Week from 5th May to 13th May. This organisation is the only charity in the UK that provides support, advocacy and information about this neurological movement condition. This makes Dystonia Awareness Week an important campaign that gives everyone an opportunity to share news and tips about the condition.
What is Dystonia?
Dystonia refers to the condition that describes uncontrollable muscle spasms that are caused by the brain giving the body incorrect signals. The complex system that allows people to control muscle movements is dictated by the nervous system and involves many areas in the brain. Dystonia affects the nervous system, disrupting the communication between a person’s brain and their muscles.
The basal ganglia area of the brain is particularly affected by the condition. This deep region of the brain monitors the speed of body movements and controls unwanted movements, telling the muscles when to move and when to stop moving. In people with dystonia, the basal ganglia give irregular instructions to the muscles so that movement becomes irregular and disordered. This results in unwanted muscle movements and contractions that can greatly affect normal functioning.
In addition, there is a sensory component to dystonia symptoms. The muscles that are affected by the uncontrolled signals send back chaotic messages to the brain. This means that the nervous system becomes overrun by a continuing cycle of abnormal communication.
Dystonia in most cases does not shorten a person's life span, but it can severely affect their quality of life. In some cases, however, the involuntary and uncontrollable muscle contractions can put at risk those who suffer from the condition. At least 70,000 people in the UK suffer from the different types of dystonia, which have their own widely differing effects. There is as yet no cure for dystonia, but there are several treatments that help alleviate the symptoms of the condition and its related effects. Coping techniques and support also exists that can help people with the condition to live as independently as possible.
The current treatments for dystonia have evolved from a better understanding of the miscommunication between the brain and the muscles. As such, it is believed that with physical therapy, the brain and muscles could be retrained to communicate properly. Rehabilitation for dystonia is still under active research, and it is hoped that new therapies will be developed as a result, particularly for secondary dystonias.
Effective management of dystonia is necessary for independent living, and can greatly improve quality of life. Combined with pain control, sensory tricks and other strategies can help those with dystonia to cope with the effects of the condition, from managing related symptoms to social situations.
Managing Symptoms and Effects
Dystonia can be quite painful and cause several related conditions such as poor sleep quality and depression. People with dystonia generally experience poor sleep. A 2016 study conducted in the UK shows that whether from motor symptoms or depressive symptoms, sleep quality is greatly affected. The pain associated with dystonia can further degrade sleep quality, as can depression and anxiety. In some cases, stress, depression and anxiety can also both aggravate dystonia and be a result of it, creating another vicious cycle.
Sleep quality alone has a significant impact on health. Improving sleep quality in those who suffer from dystonia can greatly impact the power that they have to improve their quality of life. Having dystonia is like doing physical exercise 18-24 hours a day. This puts a lot of strain on the individual. Sleeping better would greatly help them to cope with the uncontrollable muscle movements that they experience, and with the other stresses that managing the condition puts on them.
Research into treatments and techniques for managing sleep disruptions is underway. Meantime, people can use available sleep aids such as comfortable pillows that can be adjusted to provide adequate support. Some aids like conforming mattress toppers can also provide additional pain relief with support that helps the body to relax, relieving stress and strain on key pressure points.