EVENT 1 AT FOLKEMØDET 2026
Betrayed by Your Own Brain
– A Conversation About Dystonia and Treatment
Danish Dystonia Association
About Folkemødet
Folkemødet, also known in English as the Danish Democracy Festival or the People’s Meeting, is Denmark’s largest annual festival of democracy. Held on the island of Bornholm, it brings together politicians, organisations, professionals, businesses, journalists and members of the public for open debates about society, health, welfare and politics.
At Folkemødet 2026, the Danish Dystonia Association organised three events to raise awareness of dystonia and bring patients’ experiences into the public and political debate.
Betrayed by Your Own Brain – A Conversation About Dystonia and Treatment
At the Danish Dystonia Association’s first event at Folkemødet 2026, Chair Pia Vejle and Professor and Consultant Neurologist Bo Biering-Sørensen focused on what dystonia is, how the condition affects everyday life and how treatment can be adapted to the individual patient.
The conversation was a lively combination of medical knowledge and personal experience. Bo Biering-Sørensen explained the condition and the different treatment options, while Pia Vejle spoke about living with cervical dystonia and the challenges that are not always visible to other people.
When the Brain Sends Too Many Signals
Dystonia is a neurological movement disorder in which the brain sends inappropriate signals to the muscles. This causes involuntary and often sustained muscle contractions that may create repetitive movements or force parts of the body into abnormal positions.
Dystonia can occur anywhere there are muscles. Some people experience symptoms around the eyes, in the face, neck, hands or feet. In others, several parts of the body are affected. Symptoms may be present all the time, occur in episodes or be triggered by a particular activity. Writer’s cramp and musician’s dystonia are examples of task-specific dystonia, where symptoms are triggered by a specific movement.
For many patients, no precise cause can be identified. In some cases, dystonia may be genetic or develop after damage to the areas of the brain that control movement. However, for a large proportion of patients, the condition develops without a known explanation.
Bo Biering-Sørensen emphasised that dystonia is not a condition people die from. It can, however, be severely disabling and painful, with major consequences for working life, family life and social activities.
The Diagnosis Is Based on the Patient’s Symptoms
Dystonia cannot be detected by a specific blood test or scan. The diagnosis is primarily clinical. This means that the neurologist makes the diagnosis by listening to the patient’s history and examining movement, muscle activity and posture.
Scans and, in some cases, genetic testing may be used to rule out other causes. Genetic testing can be particularly relevant for younger patients.
Many people with dystonia have been through long assessment pathways before receiving the correct diagnosis. Some have been told that they should train away the muscle tension or that their symptoms are psychological. However, involuntary muscle contractions cannot simply be removed by trying harder or relaxing more.
Pia explained that her first obvious symptom appeared while she was driving in the rain. Her head began involuntarily following the movement of the windscreen wipers. Fortunately, she met a physiotherapist who recognised the symptoms and advised that she should be referred for a neurological assessment rather than ordinary exercise therapy.
The example illustrated how unusual and difficult dystonia can be to recognise. Symptoms may be triggered or aggravated by repetitive sounds, movements, stress and cold. The fact that symptoms respond to particular influences does not mean that the condition is psychological.
Treatment Must Be Adapted to the Individual
There are several treatments for dystonia. The choice depends, among other things, on where the symptoms are located, how widespread they are and how strongly they affect the patient’s life.
For focal dystonia, where a clearly defined area is affected, botulinum toxin is often the first-choice treatment. It is injected directly into selected overactive muscles and reduces the signal between the nerve and the muscle.
The aim is not to paralyse the muscles completely. Treatment must be carefully adjusted so that the inappropriate activity is reduced while the patient can still move and use the muscles.
Some patients initially choose tablet treatment, for example because they feel anxious about injections. However, tablets often have a more limited effect and may cause fatigue and other side effects.
If dystonia is very widespread, or if other treatments do not have sufficient effect, Deep Brain Stimulation, or DBS, may be considered. In DBS, electrodes are surgically implanted in specific areas of the brain. Electrical impulses can then help reduce the signals that cause inappropriate muscle activity.
DBS is used particularly for generalised or severe dystonia, where many muscles are affected and it is not possible or appropriate to treat every area with botulinum toxin.
What Does the Patient Want to Achieve?
A central theme of the conversation was the importance of individual treatment goals.
Two patients with the same type of dystonia may be affected in very different ways. One may primarily want less pain. Another may want to work at a computer, turn their head while driving or eat with other people without being severely affected by involuntary movements.
Bo Biering-Sørensen explained that treatment should be based on what matters most to the individual patient’s quality of life. The doctor should therefore ask not only how the head or another part of the body moves, but also what the condition specifically prevents the patient from doing.
Pia explained that mealtimes had been particularly difficult for her for several years. When she ate at work or in public, she had to use considerable effort to control the movements of her head. An important treatment goal therefore became being able to sit more comfortably and take part in a meal without constantly fighting against her body.
Treatment goals must also be adjusted over time. Dystonia can change, and other muscles may become active or begin to compensate for the muscles that were previously most affected. Each treatment therefore requires a new assessment rather than simply repeating the previous plan.
Dystonia Is More Than Visible Movements
Dystonia is often associated with involuntary movements and abnormal postures, but the condition may also cause a range of non-motor symptoms.
Pain is very common. A muscle that contracts constantly or repeatedly can be compared with a muscle that is never allowed to rest after hard work. This can cause significant muscular pain. Some patients also develop nerve pain, for example if prolonged tension affects the space around the nerves in the neck.
Many people also experience sleep disturbances, anxiety, depression, exhaustion and difficulty concentrating. These symptoms can reinforce one another. Pain can disrupt sleep, lack of sleep can worsen concentration, and stress can make dystonia more pronounced.
Pia also spoke about balance problems and frequently bumping into doorframes or walls. Although this may not be the most visible symptom, it can have a major impact on everyday life.
The message was therefore that the patient must be seen as a whole person. Successful treatment is not only about how far the head turns, but about the patient’s overall function and quality of life.
Small Tricks Can Provide Temporary Relief
Many people with dystonia experience what are known as sensory tricks. These are particular touches or actions that can temporarily reduce involuntary movements.
Pia uses scarves, which provide warmth and gentle contact around her neck. She can also support a hand against her face. Even the microphone used during the event appeared to have a calming effect on her movements.
Other patients find, for example, that knitting or making a particular movement with their hands helps calm the body. The effect is individual and may appear unusual to other people, but it is a well-recognised phenomenon in dystonia.
Remember the Time Between Treatments
The effect of botulinum toxin develops gradually. It typically begins to appear after around one week and is often at its best after a few weeks. The effect then lasts for a period before slowly wearing off.
By the time the patient attends the next appointment, the effect is therefore often almost gone. The neurologist cannot see for themselves how the patient was functioning when the treatment worked best.
Bo Biering-Sørensen therefore recommended that patients keep a form of treatment diary. They can record when the effect begins, when it is at its best, which activities become easier and whether any side effects occur.
Short video recordings can also be very helpful. For example, the patient can record particular movements while the treatment is working at its best. This gives the clinician a better basis for assessing whether the correct muscles were treated and whether the dose should be adjusted.
The most important feedback, however, remains the patient’s own experience: Were the goals agreed by the patient and clinician achieved?
Digital Tools and Artificial Intelligence
Digital solutions may play a greater role in future treatment. Work is already under way on apps, digital diaries, video assessments and reminders that can make it easier for patients to record the effect between treatments.
In the longer term, artificial intelligence may potentially be used as a support tool. By analysing particular movements, the technology may be able to help clinicians recognise signs of dystonia and suggest which muscles may be involved.
Bo Biering-Sørensen emphasised, however, that digital solutions should not make the decisions. They can support clinical work, but treatment must remain patient-centred and based on a thorough clinical assessment.
The Right Muscle and the Right Dose
A large part of the conversation concerned precision in botulinum toxin treatment.
In the past, injections were often given on the basis of the doctor’s assessment and anatomical knowledge without imaging guidance. However, the neck contains many muscles located close together. Some create the involuntary movement, while others try to counteract it. It is therefore not enough simply to feel that a muscle is active.
Electromyography, or EMG, can be used to measure electrical activity in a muscle. The method can confirm that activity is present, but it cannot always determine whether the muscle is causing the dystonic movement or merely trying to compensate for it.
Ultrasound makes it possible to see muscles, blood vessels and nerves and to follow the needle as it is inserted. This enables the clinician to place the medicine more precisely and avoid structures that should not be affected.
Bo Biering-Sørensen highlighted that studies have shown that even relatively large muscles are not always reached correctly without guidance. Precision is important both for the effect of treatment and for reducing the risk of side effects.
Side Effects Can Have a Major Impact
If botulinum toxin is placed in the wrong muscle or given at too high a dose, it may cause swallowing difficulties or pronounced weakness in the neck. The head may become so heavy that the patient struggles to hold it upright.
Pia explained that she had experienced her head dropping forward after a treatment. This made it difficult to eat, swallow, breathe freely and work at a computer screen. A side effect that may sound temporary can therefore have very serious consequences for several weeks.
She also described how inadequate treatment and repeated side effects once led her to consider whether she would have to give up working. It was only after changing clinician that she received treatment that worked better.
Patients should not automatically conclude that botulinum toxin does not work simply because one particular treatment plan has not produced the desired effect. Sometimes the muscles selected, the dose or the injection technique should be reassessed.
Physiotherapy Is an Important Part of Treatment
Physiotherapy cannot cure dystonia, but appropriate physiotherapy is an important part of the overall treatment pathway.
A physiotherapist can help reduce tension, maintain mobility and identify suitable exercises and strategies. Treatment should be adapted to dystonia and preferably coordinated with neurological treatment.
Botulinum toxin and physiotherapy should therefore not be seen as competing treatments. They can complement each other and together help the patient achieve better function and quality of life.
Questions from the Audience
Members of the audience asked, among other things, about treatment for laryngeal dystonia, which affects the muscles around the larynx. Botulinum toxin can also be effective in this area, but treatment is difficult and precision is particularly important because problems with the voice and swallowing may occur.
There was also a question about LDN, or Low-Dose Naltrexone. Bo Biering-Sørensen explained that he was not aware of studies documenting that LDN reduces the involuntary muscle activity itself in dystonia. Since much of the pain in dystonia is caused by constantly active muscles, the most direct treatment is often to reduce the muscle activity. However, patients may experience different types of pain, and treatment must always be assessed individually.
Knowledge Leads to Better Treatment
The conversation demonstrated how complex dystonia is. It is not one condition with one uniform course, and there is no single treatment that suits everyone.
Good treatment requires thorough assessment, precise analysis, dialogue and continuous adjustment. The patient’s own experience is an essential part of treatment because the neurologist sees the patient only for a limited period, while the patient lives with the condition every day.
For Pia Vejle and the Danish Dystonia Association, an important message was that people with dystonia must be taken seriously – even when their symptoms appear unusual, change over time or cannot immediately be explained.
The discussion also offered hope. With greater knowledge, precise treatment, interdisciplinary cooperation and new digital opportunities, more people may receive treatment that not only reduces visible movements but also improves their ability to participate in working life, family life and social communities.
A heartfelt thank you to Bo Biering-Sørensen for sharing his extensive professional knowledge and for an open and patient-centred discussion at Folkemødet 2026.
| Knowledge, precision and patient involvement are essential to better treatment and a better quality of life for people with dystonia. |
