February 4, 2023

Dystonia disease: don’t let prevention and therapy slide!

During the Corona pandemic and due to the war that has occurred, many necessary examinations at the doctor’s office (z.B. In dystonia) have been postponed by patients.

At the same time, people seem to be preoccupied with concerns other than their health at the moment. The economic and social situation puts a strain on all of us.

And yet we should not postpone important clarifications of illnesses out of fear and uncertainty about the future.

This is the opinion of the chairwoman of the self-help association “Dystonia-and-You e.V.” (DYD), Ulrike Halsch.

As she elaborates, she worries about people missing diagnosis and therapy.

Who during the corona situation or by the inflation occurred in the Ukraine conflict renounce obligatory precaution or curative treatment of their illness and hope instead that all this in the later still can be made up for.

In this context, especially in the case of neurological diseases such as dystonia, it is necessary to recognize the possible progression of the limitations quickly and to counteract them with appropriate measures.

Added to this now would be the drama in Ukraine: “The images of inhumanity are also weighing on the souls of Germans who, although not directly affected by the conflict, are particularly fearful of the violence spreading to Europe or the world,” says Dennis Riehle, a psychosocial counselor with the DYD association: “After two years of the pandemic, people are exhausted.

Although there was a light at the end of the tunnel in terms of Corona, we are now plunging straight into the next hopelessness.

It is understandable when people despair and become discouraged in the face of these challenges of the times,” says the 36-year-old, who has himself suffered from dystonia for many years and at the same time has a mental illness.

“In the end we are admittedly at the mercy of this war and stand helplessly before the unbearable impressions of pain and suffering. But in the face of our fears, we are by no means powerless,” says Riehle.

He refers in particular to concepts of Cognitive Behavioral Therapy: “The most important element of anxiety management, in addition to respect and recognition of our feelings, is the attempt to counter the exaggerated emotions with rationality and to put them into perspective by means of arguments,” Halsch and Riehle explain together.

Dystonia sufferers, and people with movement disorders in general, rely on recurring checkups and treatment.

Otherwise, the dystonia progresses, although something could be done about it.

“In many cases, drug treatment or neurosurgical interventions that dystonia patients had been urgently waiting for were postponed because of the world situation.

The concern that the lack of treatment could worsen their own condition is added to the everyday fears of the effects of the violent conflict in Ukraine.”.

Therefore, one should not give in to helplessness and remain in the apparent hopelessness of things. This applies to war and our own disability.

Riehle backs up examples of the right course of action to at least combat despair about the conflict on European soil: “What is particularly important at the moment is serious information and expert assessments. We should not be led alone by the dramatic headlines, but consume in particular classifications of experts, which bring the situation back into an unexcited picture. Alongside this, it is crucial to counteract the apparent paralysis through activity”.

And he goes on to say, “Whether we take action by providing concrete aid to Ukraine through donations or support for those fleeing – or, despite the war, consciously build breaks from the news into our daily lives, where we return to our usual hobbies and beloved pastimes: Elementary here is to make us aware of the belief that we as individuals are not to blame for the situation and therefore have our own right to pursue a distraction without self-reproach.

Even during these times, it is by no means forbidden to be happy or to laugh. We are not helping the people in Ukraine by mortification”, says the trained consultant, who also calls for health care.

“Dystonia sufferers should catch up on the examinations and therapies that have been left behind, especially now. The seasonal development has eased the corona situation, visiting doctors’ offices or hospitals is possible again without major concerns,” says Riehle.

And Ulrike Halsch adds: “If you have delayed a botulinuntoxin treatment or have not addressed deep brain stimulation, the falling incidence of Covid-19 infections encourages you to address all that now as soon as possible.

Withdrawal due to concerns about possible contagion has led to cemented fear in some people, and sometimes even to depressive manifestations.

But by giving in to the apparent superiority of the virus and the war, we end up damaging our own psychohygiene.

This cannot be the goal of a justified and appropriate withdrawal of excessive exuberance and a morally as well as ethically certainly necessary respect for death and destruction,” Riehle explains.

He therefore also encourages: “Look for interlocutors to formulate your thoughts and to get them off your chest. Often we are in a state of shock that leaves us handicapped. The crucial thing now is to remain masters of our own lives and not leave them to the power of propaganda”.

Riehle says encouragingly in conclusion: “Let us not leave our existence to dramatization and escalation scenarios, but let us reflect back to our own integrity. Prevention, therapy and treatment of diseases are elemental. With all the sympathy for Ukraine and the constant warnings about new omicron variants, they may in any case take center stage in our lives. Health remains the highest good, we should remain aware of this”.

The association dystonia-and-you e.V. Offers free psychosocial mail counseling to all. It can be reached at: [email protected]

In addition, it answers all questions about membership, clinical picture and possibilities of help on the web page www.dystonia-and-you.de.

To the background: The dystonia disease describes a variety of disorders in which involuntary muscle contractions are expressed in spasms and can lead to painful and uncontrollable contractions and extensions of various joints (especially the wrists and finger joints), the eye muscles, the voice, the facial muscles, the masticatory apparatus or the neck muscles.